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LITERACY IN THE LIVES OF THE BLIND:

AN ETHNOGRAPHIC STUDY

IN THE SAN FRANCISCO BAY AREA

by

Priscilla Leigh McKinley

A thesis submitted in partial fulfillment of the


requirements for the Doctor of Philosophy degree in
Teaching and Learning (Language, Literacy, and Culture)
in the Graduate College
of The University of Iowa

December 2006

Thesis Supervisor: Professor Anne DiPardo

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UMI Number: 3248037

Copyright 2006 by
McKinley, Priscilla Leigh

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Copyright by

PRISCILLA LEIGH MCKINLEY

2006

All Rights Reserved

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Graduate College
The University o f Iowa
Iowa City, Iowa

CERTIFICATE OF APPROVAL

PH.D. THESIS

This is to certify that the Ph.D. thesis of

Priscilla Leigh McKinley

has been approved by the Examining Committee for the thesis requirement for the Doctor
o f Philosophy degree in Teaching and Learning (Language, Literacy, and Culture)
at the December 2006 graduation.

Thesis Committee:
Anne Dipardo, Thesis Supervisor

onnie Sunstein

Gail Boldt

Patricia Foster

iDtrCglas Baynton'

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In memory o f my mother and her love for literature.

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ACKNOWLEDGEMENTS

I owe so much to the many people who helped make this dissertation possible,

especially to the people in the blindness community in the San Francisco Bay Area. All

of the 30 individuals in this study became friends through this journey and taught me so

much about love, laughter, literacy, and life. I am extremely grateful to the members of

my dissertation committee —Anne DiPardo who instilled in me the importance of doing

qualitative research, Bonnie Sunstein who showed me how to read my world and the

worlds o f others, Gail Boldt who familiarized me with Foucault and relations of power,

Douglas Baynton who described disability in new ways, and Patricia Foster who

provided my sense of passion for the personal.

Thanks to all the friends who believed in me - Darrel, Eric, Mark, Rachel, Lisa,

Tom, Karin, Chris, Bryan, Brigid, Mariyam, Nathaniel, Therese, Angela, and the list goes

on and on. They pushed me when I needed to be pushed but provided pleasure in my

moments o f procrastination at finishing this project by taking my phone calls at all hours

of the day and night. Finally, a special thanks to my husband Brian and my son Jonathan

for their love and for providing the physical and emotional support I needed to make it

this far. Thank you all so very much.

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TABLE OF CONTENTS

GLOSSARY OF TERM S.......................................................................................................vi

CHAPTER 1 INTRODUCTION: A JOURNEY TO LITERACY........................................1

A Personal Transformation..........................................................................................1
Researching Literacy for the Blind............................................................................. 8
Research Questions................................................................... ................................ 11
Preview of Chapters................................................................................................... 13

CHAPTER 2 LITERATURE REVIEW: PAST, PRESENT, AND FUTURE.................. 16

Historical Perspectives of Literacy for the Blind..................................................... 16


Contemporary Issues in Literacy for the Blind........................................................25
Theoretical Framework..............................................................................................33

CHAPTER 3 METHODOLOGY: THE BAY AREA AND THE BLIND........................ 39

Research Techniques..................................................................................................39
Research Setting......................................................................................................... 40
Research Informants...................................................................................................42
Data Collection and Analysis.................................................................................... 45
Role as Researcher.....................................................................................................49

CHAPTER 4 LITERACY FOR THE BLIND: LOOKING AT FOUR LIVES ............... 52

Literacy and Technology............................................................................................54


Adelle: “Much More Competitive” ...........................................................................58
George: “Broadened Our World”..............................................................................67
Heather: “Heavenly.. .Awesome” ............................................................................. 73
Beth: “Chatting and Surfing” .................................................................................... 79
Summary.....................................................................................................................84

CHAPTER 5 FAMILY LITERACY: PRINT, BRAILLE, AND BEYOND..................... 89

Reading to Blind Children at Home..........................................................................91


Family Members Pushing Print or B raille............................................................... 95
Family Attitudes and Self Identity.......................................................................... 104
Summary................................................................................................................... 110

CHAPTER 6 SCHOOL LITERACY: READING, WRITING, LISTENING,


LEARNING?......................................................................................................................... 113

Teachers Who Are Teaching................................................................................... 115


Exclusion in Inclusion? ................................................................................. 119

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Extra-curricular and the Blind................................................................................. 126
Problems With Print................................................................................................. 128
Daniel........................................................................................................... 128
A ugust.......................................................................................................... 132
Summary...................................................................................................................136

CHAPTER 7 REHABILITATION AND LITERACY: TRAINING, EQUIPMENT,


MENTORS?.......................................................................................................................... 139

Learning Alternative Literacy Skills.......................................................................141


Literacy Equipment.................................................................................................. 150
Mentoring Minds of the Blind and Visually Impaired.......................................... 160
Summary...................................................................................................................162

CHAPTER 8 IMMIGRATION AND LITERACY: WHAT HAPPENS W H EN 165

Language, Literacy, and the Blind.......................................................................... 167


Parents Balancing Braille.........................................................................................170
“That Is My Life?” ................................................................................................... 178
Luis..................................................................................... 178
Claire.............................................................................................................181
“The Outside World” ............................................................................................... 186
Summary................................................................................................................... 190

CHAPTER 9 EVERYDAY LITERACIES OF THE BLIND: HOME AND


COMMUNITY...................................................................................................................... 192

Literacy at Home...................................................................................................... 194


Literacy in the Community..................................................................................... 206
Summary...................................................................................................................215

CHAPTER 10 LITERACY IN THE LIVES OF THE BLIND: CONCLUSIONS 217

Looking Back and Ahead at Literacy..................................................................... 219


Future Sponsors of Literacy.................................................................................... 223
Personal Reflections on this Project........................................................................229

APPENDIX A. INFORMANT INFORMATION............................................................. 233

APPENDIX B. INITIAL INTERVIEW QUESTIONS.....................................................243

REFERENCES......................................................................................................................247

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GLOSSARY OF TERMS

AMERICAN FOUNDATION FOR THE BLIND (AFB): A nonprofit organization that


expands possibilities for people with vision loss.

ARKENSTONE READING MACHINE: The term used for the Arkenstone Open Book
when it was first introduced in the 1990s.

BLINDNESS SKILLS: Braille, computer skills, and mobility with a cane or dog.

BOOK COURIER: A portable reading device for the blind. A text-to-speech engine
reads text files that have been downloaded from a variety of sources.

BOOK PORT: A portable device that reads electronic books, takes notes, and plays audio
files. The combination of synthetic speech and digital audio capabilities makes
this a good device for reading needs.

BOOKSHARE: A source for accessible books created by the nonprofit organization


Benetech. This website enables people to share the books that they have scanned
into their computers. Currently, there are more than 25,000 books that can be
downloaded.

BRAILLE: The code for reading and writing for the blind invented by Louis Braille in
1832 and established as the standard code in the United States in 1932.

BRAILLE CELL: The 6-point blocks that make up the Braille code. Any combination of
dots within one cell can represent a letter, number, or punctuation sign.

BRAILLE EMBOSSER: A computer printer that prints documents into Braille.

BRAILLE LITE: A laptop computer with a refreshable Braille display, pins that move up
and down to form one line of Braille at a time

BRAILLE TSf SPEAK: A computer with voice output.

BRAILLE NOTE: A computer note-taker that has a Braille rather than an alphabetic
keyboard.

CANING: Traveling with a cane.

CCB: The acronym for California Council of the Blind.

CCTV: The acronym for Close Circuit Television, a machine that magnifies print up to
one hundred times. The book or other writing is placed beneath the machine and
the print appears on a monitor or screen.

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ECHO: A screen reader speech box that was used for Apple computers in the 1980s.

FOUR-TRACK: A two-speed cassette recorder used to play recorded books for the blind.

FULL INCLUSION: Indicates that students will be in a regular classroom full time. All
services must be taken to the child in that setting.

GRADE 1: The first level of Braille, which includes the signs for alphabet and the signs
for all punctuation.

GRADE 2: The shorthand form of Braille, which includes symbols for many prefixes,
suffixes, words, and parts of words. For example, b stands for but, c for can, d for
do, e for every, f for from, and so on.

IDEA: The Individuals with Disabilities Education Act as amended in 1997 which does
not require inclusion. The law requires that children with disabilities be educated
"to the maximum extent appropriate" in the "least restrictive environment." This
assumes that the "least restrictive environment" is the regular education
classroom.

INCLUSION: A term that expresses commitment to educate each child, to the maximum
extent appropriate, in the school or classroom he or she would otherwise attend.
It involves bringing the support services to the child rather than moving the child
to the services.

ITINERANT TEACHER: A teacher who works with blind and other disabled
mainstreamed students approximately two or three times a week.

JAWS: A computer program that reads the information on a computer screen and is used
by many blind people for accessing the Internet and word processing programs.

KURZWEIL 1000: A computer program that converts scanned print materials into
speech.

LARGE PRINT: Print which is magnified so that it can be read by visually impaired
individuals.

MAINSTREAMING: A word that refers to the selective placement of special education


students in one or more "regular" education classes.

MONOCULAR: A device used by visually impaired people to see distant objects that
would normally be indiscernible.

NATIONAL FEDERATION OF THE BLIND (NFB): The largest membership


organization o f blind people in the United States. The NFB improves blind
people's lives through advocacy, education, research, technology, and programs,

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encouraging independence and self-confidence. The NFB was established in
1940 under the leadership of Dr. Jacobes TenBroek, a professor at the University
o f California, Berkeley.

NATIONAL LIBRARY SERVICES FOR THE BLIND AND PHYSICALLY


HANDICAPPED (NLS): A free library program of Braille and audio materials
circulated to eligible borrowers in the United States by postage-free mail.

NEMITH: The Braille math code designed by Dr. Nemeth in 1950.

NEWSLINE FOR THE BLIND: A nationwide newspaper service for the blind that uses
telephone lines and digitized voice synthesizer systems to provide blind and
visually impaired people daily access to a variety of newspapers. Before 1994
when the pilot project began, such timely access to the daily newspaper had never
before been available to the blind

OPTICON: A device using a camera and 144 pins that form a tactile representation of the
letters that the blind person can feel with the index finger.

OPEN BOOK: A scanner with Optical Character Recognition (OCR) that converts print
into spoken language.

PARTIAL: A person who has limited vision.

PERKIN'S BRAILLER: A manual Braille writer equivalent to a typewriter.

REFRESHABLE BRAILLE DISPLAY: An electro-mechanical device for displaying


Braille characters, usually by means of raising dots through holes in a flat surface.
The display usually sits under the computer keyboard and is used to present text
to computer users who are blind.

RFB&D: The acronym for Recordings for the Blind and Dyslexic, the nation's education
library for people with print disabilities that provides educational materials in
recorded and computerized formats.

SIGHTED GUIDE: The term used when a blind person takes a sighted person's arm to
move through a crowd of people or another congested area. The term is used
negatively if a blind person is not willing to learn to travel on his or her own.

SIGHT-SAVING SCHOOLS: A term that started in the 1950s for schools for the blind.
Vinton, the school for the blind in Iowa, still uses this term. Basically the schools
tried to preserve sight rather than teaching the skills of blindness.

SLATE: the metal or plastic tool for holding Braille paper for writing.

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SLEEP SHADES: The eye shades used for training blind people who still have some
sight. The shades are ordinarily used to keep out the light when trying to sleep.

STYLUS: the literacy tool for punching Braille dots into paper.

TAPPING: A cane travel technique used by blind people where they tap their canes as
they swing them back and forth.

TYPE 'N SPEAK (TNS): An electronic note-taking device with voice but no screen.

TOTAL: A person who has no sight.

UBC: The acronym for the Universal Braille code, which is currently not the code used
by most people in the United States.

VI TEACHER: A teacher o f blind and visually impaired children.

VOCAL-EYES: A screen-reading program used for DOS, not windows.

WINDOW-EYES: A screen-reading program that converts text on the screen into speech.

ZOOM TEXT: A screen magnification program for computers.

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1

CHAPTER 1

INTRODUCTION: A JOURNEY TO LITERACY

Over the last few decades, the concept of literacy has been evolving. Previously,

literacy was viewed as the separate skills of reading and writing (Heath, 1991; Lankshear

& Knobel, 2003). More recently, many researchers have looked at literacy as a social

practice (Barton & Hamilton, 1998; Brandt, 2001; Heath, 1983; Luke, 1992; Szwed,

2001) and literacy can mean power (Luke, 1994; Street, 1995). While literacy can mean

different things to different people at different times (Luke & Freebody, 1997), many

people have been denied literacy based on race, class, and gender (Brandt, 2001; Dias &

Flores, 2001; Moll, 1994; Street, 1995). While Brandt (2001) suggests that reading and

writing are not superior to other forms of communication, she describes the unequal

practices for those who do not possess these literacy skills. Like with many groups,

access to literacy has been denied to persons with disabilities, including the blind, which

will be explored in this dissertation.

In the first section o f this chapter, I describe my journey from the old notions of

literacy to a new understanding that came about when I lost my sight. Then I briefly

describe the research ideas that led to this study. Finally I include the list of my research

questions, as well as a preview of the chapters.

A Personal Transformation

During my childhood, I took access to literacy for granted, as reading and writing

materials always had been present in my life. I was surrounded by books. Almost every

room in our old Victorian house had bookshelves filled to capacity. In the living room,

my parents' books of poetry and literature lined the shelves-Dickinson, Emerson,

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Faulkner, Frost, Hawthorn, Hemmingway, James, Thoreau, etc.—and stacks of National

Geographic magazines sat in the cupboards beneath the shelves. Several boxes of old

books, magazines, and newspapers filled the metal storage shelves in the basement. In

the playroom/den, hundreds o f children's books, a set of World Book encyclopedias, and

a set o f Childkraft books stood on the shelves of an old wooden bookcase, where they

were accessible to me and my five siblings. If I wasn't reading to myself, my mother read

to me. I can still hear her words from one of my favorite childhood books, Dr. Seuss's

Horton Hatches an Egg, as she stressed every syllable, "An elephant's faithful, one

hundred percent." And that's how much my mother expected from her children.

My mother expected all of her children to succeed as "literate" people, and she

believed that reading and writing would lead to that success. In junior high, the years and

years o f her continuous corrections began to rub off on me, and I began to correct my

peers if they made grammatical errors when speaking and/or writing. Even though I had

told several of my friends and male love interests that I was adopted, that my real mother

had been a nurse and my real father had been a doctor and that both were killed in a car

accident on the way to save someone, I was rather proud o f my parents. My mother had

been an English teacher and was raising six children, and my father was a college-

educated farmer who wrote poetry, the words flowing flawlessly from his fountain pens.

After his death when I was 14 years old, my mother published a book of his poems for

family members, using the memorial money to keep him alive through the printed word.

When I reached high school, I took several English courses from Mrs.

Hendrickson, an older woman whose voice shook as much as her hands, and began to

read a few o f the classics that stood on the bookshelves in the living room, my parents'

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books, their canon. However, the courses that interested me the most were classified as

Language Arts, something very new to our school. In Mr. Pleggenkuehl's class, we not

only learned correct grammatical structures, but we also wrote personal essays,

something I had never done before. My first essay was entitled, "Living with my Brother

is a Difficult Task." In Mr. Ashkraft's class, we gave speeches, wrote poetry, watched

documentaries, and even made collages that told the stories of our identities, using

pictures and words cut out of magazines. While I thought these experiences were fun,

they didn't fit into my definition of literacy, as I had acquired my mother's definition,

which fit the traditional view of literacy as separate skills of reading and writing (Heath,

1991; Lankshear and Knobel, 2003).

After graduating from high school, I left for college at The University o f Iowa,

where I planned to study pre-med, a major that changed to elementary education after the

first three weeks o f college chemistry. However, rather than learning to teach other

people's children, I had a child of my own. Due to pre-eclampsia and years and years

with juvenile diabetes, I lost my sight when my son Jonathan was bom. With the

blindness, I lost the ability to read and write, which in my mind lead to the loss of literacy

and my self-identity. How could I position myself in the world if I couldn't read my

Cosmopolitan magazines or the TV Guide? How could I relate to the people in the world

if I lacked access to the information in the newspapers? How could I be a good mother if

I couldn't read to my son? All of my life I had been a sighted person and had been able to

access written materials whenever and wherever I wanted, but I lost that life when I lost

my sight.

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When I told my rehabilitation counselor of my concerns, he told me of the library

for the blind, and I began listening to an average o f four books on tape per week. He

gave me a Braille book, so I could start learning Braille on my own. When I felt the

hundreds of little raised bumps, I thought learning Braille would be impossible. I didn't

understand how anyone could read bumps. I would slide my fingers across the lines on

the pages, trying to distinguish between the letters, but they all felt the same. The first

few pages o f the book contained only the alphabet, including the Braille symbol for each

letter and a raised print letter. A single dot or a combination of dots could represent a

letter or a punctuation mark, not to exceed six. A single bump, referred to as "dot 1"

which appeared in the upper left-hand comer o f the Braille cell, symbolized the letter A.

Dots 1 and 2, the top and middle dots on the left, symbolized the letter B. Dots 1 and 4,

both at the top of the Braille block, represented a C. I didn't have much trouble with the

first letters, those represented by one to three dots, and even read short words. Cab. Bad.

Bade. Fade. But then I came to letters with four and five dots in the cell, like N

represented by dots 1 ,3 ,4 , and 5, or Q represented by dots 1, 2, 3,4, and 5, or Z by dots

2, 3,4, and 6, and I wanted to give up, but I didn't. I was determined to read to my son.

When I became proficient with the alphabet and short readings, I ordered a few

twin vision books (children's print books with clear plastic Braille inserts). As soon as

they arrived from the library at the Iowa Department for the blind, I opened the box

excitedly, removed one o f the books, and read the cover, which was labeled with Braille,

Horton Hatches an Egg. I called 18-month-old Jonathan into the living room and he

came running. "Mommy's going to read a story to you," I said, and he climbed up onto

the couch beside me. I opened the book to the first insert and began to read, but by the

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time I was finished saying, "Sighed Mayzie a lazy bird hatching an egg: I'm tired and I'm

bored and I've kinks in my legs.. Jonathan was off and running. He didn't have the

patience to wait for the words as my fingers slid slowly along the Braille bumps.

For Jonathan's second birthday, I bought him a set of magnetic letters that I could

feel. Once he learned his letters, I began to spell out short words. Every night, I quizzed

him on the sounds o f each letter. I would say a word and Jonathan would make the sound

o f the first letter, say the letter, and repeat the word. "Ba. B. Ball." By the time he was

three, he was reading children's books. By the time he was four, he was reading the mail.

When he reached kindergarten, he was reading at a second-semester fourth-grade level.

A few years after Jonathan started school, I decided to continue my education. I

had been listening to books on tape for a few years, primarily the books that still lined the

shelves in my mother's library, the books that I had failed to finish reading in Mrs.

Hendrickson's class when I was younger, and I decided to major in English. At first I

wondered how I could do the work. For me, Braille was very slow, but technology for

the blind was changing at a very fast rate. I already had my first computer with speech,

an Apple 2GS with Echo, a small voice box that plugged into the back of the computer

and sounded like the robot from the television show Lost in Space, wandering around

some strange planet, saying, "Warning.. .warning.. .warning." I spent the next four years,

curled up on the couch in my living room, listening to books on tape, or sitting at my

desk in my bedroom, typing papers on my computer as Perfect Paul, the synthesized

voice from my second computer, an Arkenstone Open Book with the voice program Dek

Talk, read the words on the screen.

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When I started teaching at the University of Iowa during graduate school, I found it

very difficult to simultaneously listen to my Type and Speak, a notetaker with speech but

no screen, while taking roll, reading passages to students, and giving lectures. I thought

it would have been easier to have been bom blind so I would have learned Braille as a

child. However, when I attended conventions of the blind, I heard stories from young

adults who had been bom with visual impairments but did not leam Braille. Many felt

they lacked the skills they needed to succeed in college and/or work, and decided to

attend rehabilitation training centers to leam blindness skills, including Braille. But as it

was for me, many found that it was difficult to leam Braille as adults.

A few years ago while I was taking a graduate seminar on literacy, I posted an e-

mail survey on Braille literacy to the list of National Association of Blind Students

(NABS). Out of the seventeen responses I received, nine of the students were totally

blind and eight had some residual vision when they started elementary school. O f those

eight, five had degenerative eye conditions, yet they were not taught Braille as children.

One student said, "I was encouraged to use my sight." Another wrote, "I was taught

Braille in a special education room by my reader. She had no teaching degree and no

knowledge of Braille." Another wrote that he "straggled to read print longer than I

should have." As children, they straggled to read large print with magnifiers and glasses,

straining and fatiguing themselves physically and emotionally, and rarely achieving the

speed and accuracy they could have obtained if they had used Braille. All five lost their

remaining sight in their late teens and early twenties. All five felt that they had been

robbed o f an important opportunity to leam Braille in their formative years and straggled

to leam Braille skills as adults at rehabilitation and training centers. As for most adults

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learning a new language, it was much more difficult for them to achieve the speed and

accuracy o f those who were taught as children.

Shortly after I received the responses from that survey, my local community

theater performed Wait Until Dark. At age 10,1 had seen the movie adaptation, in which

Audrey Hepbum played a blind woman who was being tormented by a drug smuggler. I

remembered the end o f the movie, when Audrey Hepbum stabbed the man in the chest

with a butcher knife. I remembered that he lunged forward, using the knife to drag

himself across her kitchen floor, moving closer and closer to where she hid behind her

refrigerator door. I remembered that I screamed and woke my father, who had been

sleeping soundly in his brown, vinyl chair. However, I failed to remember, or even

notice for that matter, that the blind character did not use Braille.

After the theater director called and asked if I would be the coach for the actress

playing the part of the blind woman, I scanned and read through the script very carefully.

I was outraged that the blind character didn't use Braille. When she wanted to remember

phone numbers, she counted out sugar cubes and placed them in rows, one row for each

number. I informed the director that they needed to change the script to incorporate

Braille. I lent them Braille books for the coffee table on the set and a slate and stylus so

the actress could write down the phone numbers in Braille, saving the sugar cubes for the

coffee. But then I started wondering what methods and techniques people used to access

the printed word if they didn't know Braille and didn't have access to computers. Even if

blind people had computers, how was technology affecting literacy for blind people?

How and why were blind individuals acquiring the skills of literacy?

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With all o f the changes in my life, I started to resist my previous definition of

literacy. Did literacy mean being able to read and write academic papers, as my mother

had hinted for so many years? Did it mean speaking English with no grammatical

mistakes? Did it mean spelling out words with magnetic letters? Did it mean reading

Braille more than 10 words a minute? Did it mean counting out sugar cubes? Did it

mean listening to synthesized speech? Or did it mean something more?

Among the blind, the questions of who is literate and, more importantly, what is

literacy, are discussed at seminars and conventions of the blind. Parents of blind

children, VI teachers (teachers of the visually impaired), rehabilitation counselors, and

blind persons themselves ask these questions on a regular basis. The Braille versus print

debate often stands in the center o f these discussions and questions, but I believe there is

much more to literacy for the blind than whether or not a person reads Braille or print,

and as one of those hundreds and thousands of blind and visually impaired individuals

who lost the ability to read print but did not leam Braille well enough to use it efficiently,

I decided to research the topic for this dissertation.

Researching Literacy for the Blind

As it is for the sighted, reading and writing for the blind can lead to doorways to

opportunities, including jobs. However, in the early 1990s, American Foundation for the

Blind (AFB) records illustrated that only 12 percent of the blind in this country read

Braille (cited in Johnson, 1996), and 70 percent were unemployed (Poppe, 1991;

Spongin, 1989). O f the 30 percent who worked, 85 to 90 percent read and wrote Braille

(Poppe, 1991; Spungin, 1989). These statistics indicate that the acquisition of Braille

literacy leads to jobs and success. According to Leies (1999), "Braille is the only

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component in the lives of many blind people that affords genuine literacy" (p. 37).

However, in this view, literacy is similar to what Street (1995) has termed autonomous,

since literacy is considered a cognitive skill separate from social context (p. 76). In

Street's ideological model, literacy practices are linked to cultural and power structures in

society and to practices associated with reading and writing in different contexts.

In the age o f technology, the concepts of literacy have been changing

continuously and the demands are much greater (Barton & Hamilton, 1998; Brandt,

2001). Venezky (1990) asserts, "Today's expectations for literacy application far exceed

those o f 150 years ago" (p. 11). Lankshear and Knobel (1997) argue that students need to

be exposed to technology in their classrooms and that technologies should be used in a

real world way, not just used for exercises (p. 108). Many of these new technologies

include visual literacies (Green, 1997). According to Myers (1996), literacy involves a

lot of flexibility on the part o f teachers. They must be willing to add sign systems, such

as videos included with texts. He writes, "The point is that if schools do not introduce the

students to the codes and literacies of power, then schools will become part o f the process

of socially transmitting inequality" (Myers, 1996, p. 124). In reading Myers' statement, I

have to ask what this means for blind and visually impaired individuals. Are the codes

and literacies of power the same for blind and sighted individuals? Are blind and

visually impaired students learning the codes and literacies of power in school? If not,

what does this mean for their futures?

Baynham and Prinsloo (2001) suggest that there is a need to use New Literacy

Studies "to investigate some o f the claims made for the impact of such technological

investigations on daily literacy practices at home, school, and work" (p. 89). In her book

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Literacy in American Lives, Brandt (2001) looks at issues of access, control, and power

by drawing on ideas from the new literacy studies, including those who have focused on

economics like Gee, Hull, and Lankshear (1996). Brandt suggests that "the accumulating

history of literacy itself came to press on the scenes of new literacy learning in

increasingly complicated ways, serving to enable and sometimes to impede acts of

learning" (p. 4). She illustrated the ways literacy and sponsors of literacy have changed

over time. Brandt argued that literacy sponsors, other than schools, exist, including local,

state, and national governments, various economic agents, and home and community

members. While Brandt looked at the literacies of people in a rural community in

Wisconsin, this study explores the political, historical, cultural, and personal literacy

experiences of blind and visually impaired individuals in the San Francisco Bay Area.

This dissertation traces literacy for the blind over the last eighty years, investigates

sponsors of literacy for the blind, and looks at the ways literacy is being used in the

everyday lives o f the blind.

Because the majority of the previous research of literacy for the blind focuses on

school literacy, primarily looking at the Braille versus print debate, I wish to expand on

previous research by looking at past and present literacies in all domains to discover how

blind people make sense of their lives. By exploring the past and present literacy

experiences of my informants, I hope to offer new insights on the literacy practices of

blind and visually impaired individuals, as well as expose the power relations that exist in

the lives of the blind.

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11

Research Questions

About two years ago, I moved to the San Francisco Bay Area in California, and I

noticed the number of blind people in the Bay Area compared to Iowa City, Iowa. At

first I believed the number of blind people was related only to the increase in population,

but as time went on, I learned that several blind and visually impaired individuals moved

to the Bay Area for the sense o f community among the blind. Even though the blind

were spread out over miles, spanning across the San Francisco Bay and small mountain

ranges, they seemed to share common knowledge about programs and services for the

blind in the area, as well as the latest technology for the blind. As Akiko, an informant

originally from Japan, said, "It's a small, small world."

After living in the Bay Area for a few months, I started to become a part of this

blindness community. Because o f my background, including my concern that many blind

and visually impaired individuals were not learning the skills they would need to succeed

in life, I wanted to discover how literacy was used in the everyday lives o f other blind

people, both past and present. I wanted to understand what it means to be literate in

different contexts for these blind individuals. I wanted to understand what happens when

people fall through the cracks of print and Braille and how they negotiate or do not

negotiate their way through life. By exploring these ideas and sharing the results of the

findings with others, blind and visually impaired individuals will benefit.

Using ethnographic case studies in this research, I examined and compared the

literacy practices in the lives of 30 blind and visually impaired individuals in the San

Francisco Bay Area and addressed the following questions:

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12

1. In what ways has literacy changed for these blind individuals over time,

especially with new technologies?

2. How did these blind individuals acquire the skills of literacy, from whom, at what

age, under what circumstances, and for what reasons?

3. How does literacy for these blind individuals vary with age, socio-economic class,

and culture?

4. Which literacy tools are used in specific settings, including home, community,

school, and work?

5. How have literacy experiences influenced the self-identity of these blind and

visually impaired individuals?

In hearing the answers to these questions, you will leam about the literacy

experiences of people like Sava, a 17-year-old high school student who resists reading

Braille in front o f her parents who view her blindness as something that needs to be

healed, and Ayella, a 55-year-old woman who lost her sight while working in a crime lab

in the Philippines and moved to the United States in order to find a job in a field other

than massage. You will hear stories from people like Bobbi and Dawn, two totally blind

individuals who were not taught Braille and thus could not participate in classroom

activities. On the other hand, you will hear the positive stories from individuals like

Gloria, a 25-year-old woman who spent the first few years of her life in Puerto Rico,

whose teacher read and wrote Braille along side of her almost every day, and Smoky,

who lost his sight at age 30 and went back to work after receiving rehabilitation training.

Hopefully, by hearing the stories of these and the other informants, parents of blind

children, mainstream teachers, itinerant teachers, rehabilitation counselors, blind

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13

individuals, and others who want to know more about everyday literacy in the lives of the

blind will be better informed when making decisions that impact literacy for blind and

visually impaired individuals.

Preview of Chapters

The next two chapters provide the background for this empirical study. In

Chapter 2 ,1 provide a review of the literature, including past, present, and future. I start

with a brief history of the education and employment of the blind in the past two

centuries. Then I provide a review of the literature from the last 20 years which discusses

the concerns about a decrease in literacy for the blind. Finally, I conclude the chapter

with a section on the theoretical framework for this dissertation. Chapter 3 discusses the

research methodology, including data collection, data analysis, and my role as researcher.

The chapter also includes information about the setting and the informants.

Because the present cannot be understood without looking at the past, Chapter 4

traces literacy by presenting the life histories of four totally blind individuals from age 77

to 17. Through the stories o f Adelle, George, Heather, and Beth, I explore the ways new

technologies have provided access to information and have opened up doors to

opportunities for blind and visually impaired individuals. However, while the chapter

illustrates that technology has made a difference, it shows that the blind need more than

technology to succeed. They need supportive parents, teachers, and rehabilitation

professionals, who become the focus in the following three chapters.

Chapter 5 looks at early family literacy experiences through a lens of

normalization. The first section compares the informants who were read to or not read to

by their parents and/or siblings. The second section focuses on the individuals who

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14

learned Braille, print, or both. In the final section, the informants tell stories of the ways

the attitudes o f their family members affected their lives, including their literacy learning.

Chapter 6 moves into the public schools and explores a few of the consequences

of mainstreaming. Several informants describe their positive and/or negative literacy

experiences both inside and outside of the classroom. The last part of the chapter focuses

on the struggles in school for two individuals, Daniel and August. This chapter illustrates

the sense o f exclusion and isolation that these blind and visually impaired students

encountered in their mainstreamed schools.

While Chapter 7 includes the experiences that many informants had with

rehabilitation services, I provide more details of the informants who lost their sight as

adults and had to learn alternative techniques for reading and/or writing. The chapter is

broken down into three parts, including training, equipment, and mentoring. The

informants argue that the rehabilitation system fails if one component is missing.

In Chapter 8, the informants who immigrated to the United States from other

countries describe the various ways the immigration experience affected literacy in their

lives. After providing a section on the complexities of using English as a second

language as a blind person, the chapter focuses on five informants. First, Emma,

originally from Ireland, and Akiko, originally from Japan, describe the amount o f work

their parents did so they could attend public schools in their home countries, including

transcribing all their homework and tests into Braille, and their reactions to the special

education programs in the United States. Next, Luis and Claire tell tales of the

educational system for the blind and visually impaired in Mexico, both residential and

public, and share their reasons for moving to the United States. Finally, Ayella describes

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the private rehabilitation services for the blind in the Philippines, including learning how

to use a computer without a computer.

Chapter 9 is broken down into two sections on home and community. In each

section, I illustrate the everyday literacy practices of the informants, including which

tools are being used for which activities. In this chapter, the informants discuss the

reasons why they choose particular tools for reading and writing, as well as why they

reject others. In looking at their everyday literacies, it is clear to see how their past

experiences have influenced literacy in their lives today.

Finally in Chapter 10,1 summarize the findings of the chapters and provide

implications for future research, as well as reflections on this project.

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CHAPTER 2

LITERATURE REVIEW: PAST, PRESENT,

AND FUTURE

Because literacy for the blind has been complicated throughout history, I start this

chapter by offering an historical overview of the education of reading and writing for the

blind. Next, the review focuses on contemporary issues and studies initiated with the

introduction o f mainstreaming in the public schools and the idea o f a Braille literacy

crisis. Finally, I conclude with the theoretical framework that was used for this study.

These readings provide a background o f the issues of literacy for the blind in the past and

illustrate the ways literacy for the blind needs to be studied in the future. All of the

readings shaped this project in some way.

Historical Perspectives of Literacy for the Blind

From the time of Homer until Louis Braille designed his six-point system for

reading and writing, literacy for the blind meant oral literacy. A few attempts had been

made to teach the blind to read, but the systems were not practical, using nails or pins

pounded into boards in the shapes of alphabetic letters (Lorimer, 2000). Also, few people

believed that the blind could be taught to read and write. However, in 1771, Valentin

Hauy, a French man, believed otherwise. As he was walking along the streets o f Paris, he

heard laughing inside a cafe and stopped to see that the entertainment was composed of

12 blind men from the refuge for the poor. In his journal, he wrote:

They were dressed up in ugly gowns and long pointed hats and wore huge
cardboard spectacles without lenses on their noses. They were set in front o f a
desk with music and lights and produced a most monotonous sound, for the singer
and the violins and the cello all followed the same musical part. This was no
doubt the justification for the insult made to these unfortunate people, surrounding
them with devices which showed a stupid ignorance.. .1 will substitute the truth

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for this mocking parody. I will make the blind to read. I will put in their hands
volumes printed by themselves, (cited in Lorimer, 2000, p. 17)

Ten years after witnessing the scene described in the above journal entry, Hauy

opened the first school for the blind in Paris, as he believed that if the blind could learn to

read, they would have opportunities for employment and self sufficiency. In the Paris

school and others that opened in Europe, embossed letters were used for reading.

However, blind students deemed this system impractical, as trying to feel the raised

letters was slow and cumbersome (Koestler, 1976). In 1819, Captain Charles Bartier o f

the French army visited the Paris school, where Louis Braille was a student. The captain

had designed a 12-point code based on letters and phonetics that could be used by the

army for night writing and reading. Louis Braille, who became blind at the age of 3 and

moved to the school at age 10, as well as other blind students, thought the system was too

complicated. Braille believed that he could devise a simpler system, and in 1834, he

perfected a code based on a six-point system, with a total of sixty-three characters—one

for every letter of the alphabet and others for punctuation and special abbreviations

(Bickle, 1988).

While Louis Braille was perfecting his system for reading and writing for the

blind in France, asylums were constructed in the United States to house “the blind, the

deaf, and the feeble-minded” (Best, 1919, p. 253). Many people in the United States

believed that the blind should be institutionalized, and records indicate that the motive

was to keep the blind off the streets and in a safe environment (Best, 1919, p. 37).

Economics seems to have been another motive. In 1832, Samuel Gridley Howe wrote:

Instead of condemning the poor blind man to stand at the comer o f the street and
ask for charity, you may give to him the means of becoming an enlightened,
happy, and uselul member of society.. .The object is an economical one to the

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community. It is to take from society so many deadweights and is proposed to


educate the blind and enable them to earn their own livelihood, and society ought
to consider any capitol so invested as a sinking fund for the redemption o f its
charitable debts, as a provision for preventing the blind from becoming taxes to
the community (cited in Ferrell, 1956, p. 159.)

At first, Howe had progressive ideas and good intentions. In 1832, the Perkin's

School for the Blind, then known as the New England Asylum for the Blind, opened with

Howe as the director. While he believed that it would be better for blind children to

attend their local schools and live with their families, he understood that they would learn

more in residential schools where they would acquire the knowledge and skills they

needed to succeed in the broader community.

Education was based on religious doctrine in the 19th century (de Castell & Luke,

1988; Resnick & Resnick, 1977) and many charitable organizations for the blind believed

that the blind should be educated for religious purposes (Best, 1919), but Howe believed

that blind children needed more than religion (Rex, Koenig, Wormsley, & Baker, 1994).

In 1868, Howe wrote a letter to Charles Dickens, who had been moved by a deaf-blind

girl, Laura Bridgeman, while visiting the New England Asylum in 1842. In the letter,

Howe made the following request:

The blind want something to gladden their hearts.. .they want happier
views of life. They want books that will give pleasure and joy in their dark
chambers.. .your books do this and I want the blind to have one of them at
their fingers end. (cited in Ferrell, 1956, p. 109)

While Howe supported schools for the blind, he rejected many students. The

records indicate that he rarely took students with multiple disabilities (Koestler, 1976),

reflecting the attitude at the time that education was for only elite students (Resnick &

Resnick, 1977). While Howe had accepted Laura Bridgeman as a personal experiment,

his views on human nature changed "from romantic optimism toward biological

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determinism" (Freeberg, 2001, p. 6). In part, Howe's shifting attitudes resulted from

students who returned to the school, claiming that they could not succeed in their local

communities.

While some charitable schools denied admission to certain students, other schools

for the blind ceased to exist for lack of money. In Missouri, when a school asked for

financial aid, the legislators turned down the request, saying that it would be "time, labor,

and money lost to teach the blind to read" (cited in Best, 1919, p. 271). Similarly, most

instructors o f the blind believed that it was more important to teach trades than to teach

reading and writing. Best believed that "Broom making [was] one of the most important

single trades for the blind" (p. 52). Similarly, Lowenfeld, who was considered one of the

experts on blindness in the first half of the twentieth century, said, "I can remember that

in the 1920s when I began teaching blind children, even the most gifted and capable blind

students had to learn a trade, whether it was brush or broom making, basketry or chair

caning, or piano tuning and repair" (Lowenfeld, 1981, p. 76). Reports from the schools

in the 1890s and 1900s illustrate how the administrators and teachers viewed their

students. One report stated, "The brushing sense of his blindness fills all of his hours

with hopeless misery." One school described the state of the blind as "mental and

physical torpor in which they have cast their lives." Another wrote that the blind were

"doomed to a dreary, helpless, and unmeaning existence" (Best, 1919, p. 41). Once the

children graduated from the residential schools, they spent the rest o f their lives making

baskets and brooms in sheltered workshops, which were considered charitable institutions

under welfare authority and where dependency-creating aspects were ever-present (Leies,

1999). In 1917, only 16 percent of the blind were gainfully employed outside of the

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sheltered workshops, peddling matchsticks, pencils, and shoestrings door to door,

husking com for farmers, caning chairs, weaving baskets, and tuning pianos (Best, 1919,

p. 63). Even as late as the 1930s, the blind working in the sheltered workshops received

the same income as the blind who stayed at home on Welfare (Ferrell, 1956, p. 158).

However, even these jobs became outdated with mass production. There was no longer a

demand for home-made brooms, baskets, or embroidered towels.

During World War I, the nation became concerned with the low literacy rate

among enlisted men, as many were unable to read a newspaper. At that time,

standardized tests were initiated in the schools (Heath, 1991; Resnick & Resnick, 1977).

It appears as though this national concern in literacy triggered testing in the schools for

the blind. In 1918, Thomas Macaloni, the superintendent at the Western Pennsylvania

School for the Blind, began testing the students in various subjects in order to improve

the pedagogy for teaching the blind. However, the tests for the partially blind and the

totally blind differed (Koestler, 1976). Totally blind students took tests that were easier,

because, at the time, teachers believed that sight meant intellect.

With World War I came hundreds of blinded veterans. In 1921, veterans began

writing letters to President Harding, requesting that money be allocated for books in

Braille. As there were no expectations for these men to go back to work, they wanted

books to read. The cost of transcribing books in Braille was high, and the veterans asked

for more money. At the time, only 300 titles were available nation-wide, and most of

those were textbooks for blind children. The veterans sent records, showing the cost for

Brailling books compared to the cost of printing. For most, the cost was between 15 and

20 times higher for Braille, and some books cost even more, like Vanity Fair, which cost

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$0.85 for print and $55.95 for Braille (Best, 1919). Whether making Braille presses or

transcribing using a slate and stylus, the process of creating a book for the blind was

expensive and time-consuming, taking weeks, months, and sometimes even years. In

1919, when one man wanted to use a universal Braille press in his garage to produce a

copy o f the King James Version of The Bible, he had to give up the plan because of time

and money, estimating that the project would take five years. However, with the drive of

the blind veterans, President Harding budgeted more money to the new American

Printing House for the Blind in Louisville, Kentucky, and Coolidge increased the amount

in 1927, which benefited both blind adults and children.

With the money allocated for books, an issue arose over which books should be

put into an alternative format. As a standard code for the blind had not yet been

established in the United States, a debate started over which system should be used.

Instructors of the blind were fighting over which code worked best—the Boston Moon

Type, resembling alphabetic letters, the American Standard six-point system, which was

the revised version o f the Braille system, or an eight-point system, known as the New

York point. Different schools used different codes (Irwin, 1976). The primer for blind

children called The Standard Dot Drill Key was published in three forms—British Braille,

American Braille, and New York Point (Best, 1919). The American Association of

Instructors for the blind endorsed a raised print system (Best, 1919). While more blind

children and adults would be able to read with the Braille code, not to mention write, as

Braille was the only system that would enable the blind to write, teachers of the blind

resisted. First, the teachers wanted a system that they could read by sight, even if it

meant difficulty for their students. Second, they worried about job security. If the blind

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could learn Braille easily, they could also teach Braille and perhaps take their jobs (Irwin,

1976; Koestler, 1976). Other instructors believed that the blind could be educated and

pushed for the revised Braille system. Finally, in 1932, after the time which became

known as "The War of the Dots, "almost 100 years after Louis Braille invented his code,

Braille was accepted as the official code for reading and writing for blind people in the

United States, and the blind finally had the means to read and write (Ferrell, 1956;

Koestler, 1976).

When the American Foundation for the Blind was established in 1921, the idea

was to have “an agency that could coordinate the development of educational and social

policies by experts in the blindness field” (Ferguson, 2001, p. 23). However, like the

charitable organizations in the 19th century, educational and social policies created by the

professionals restricted and separated the blind from mainstream society. Residential

schools had low expectations for their students and possessed a custodial attitude,

assuming that the blind were incapable of living independently and of becoming truly

literate.

In the 1940s and 1950s, with advances in medicine and an increasing number of

blind children, society, including those who claimed to be experts on the blind, began to

view blindness as a medical problem. Medical technology, including incubation and

oxygen, caused thousands o f cases of retinopathy of prematurity among infants

(Ferguson, 2001). At the time, doctors could not explain the increase in the cause of

blindness, and many residential school administrators began working with hospitals and

doctors, trying to restore and preserve sight. Schools for the blind became sight-saving

schools. For example, the Iowa School for the Blind, originally The Iowa Asylum for the

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Blind, became the Iowa Braille and Sight-Saving School, which officially is still the

name today (O'Leary, 1984).

In the sight-saving schools, the use o f vision was discouraged, assuming that

vision could be overused and cause more harm. If students could not read ordinary print,

the schools supplied large print, adjustable desktops, sight-saving paper (apparently not

stark white), pencils, and chalk (Lowenfeld, 1981). Teachers worked with doctors, and

many students with some residual vision were put into dark rooms for hours to help

preserve their sight. In 1947, Lowenfeld, who was working as the headmaster at an

Oregon school for the blind, sent one boy home for the summer with a prescription for

complete eye rest in total darkness (Lowenfeld, 1981).

Two events initiated changes in the status of blind and visually impaired

individuals around the middle of the 20th century. First, in 1940, the blind began to

organize under the leadership of Dr. Jacobes TenBroek, a blind political science professor

at Berkeley, and established the National Federation of the Blind (NFB), an organization

o f the blind speaking for themselves. In 1948, TenBroek called for a bill of rights for the

blind, and part of his speech follows:

We want a bill o f rights, not to be declaring our independence from society but
our need of being integrated into it, not guaranteeing special favors and position
but equality o f treatment, not glossing over our weaknesses or limitations but
recognizing us for what we are—normal human beings, or at least as normal as
human beings are, a bill of rights according us a fair chance to live socially useful
lives, (cited in Matson, 1990, p. 121)

Second, in 1954, The Brown versus the Board of Education decision initiated

changes in the education o f the blind (Koestler, 1976). The schools for the blind were

some o f the first to be integrated, as families wanted to have their children close to them.

Before integration, blind children often attended residential schools miles away from

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their homes, sometimes in other states. Because only five schools for blind African-

American children existed before integration, the new laws enabled these children to

attend their local schools and live with their families. These children were finally able to

use new Braille books that were not worn-down from previous users. Like teachers who

were not prepared to educate sighted African American children (McDermott, 1976),

educators felt unprepared to handle the situation with the blind. Even so, public schools

pushed to teach blind children, accusing the residential schools of taking children out of

their homes, of instilling unrealistic expectations for jobs, and of failing to prepare

students for the real world (Koestler, 1976).

At first, blind children were segregated into separate classrooms. However,

legislation in 1963, the passage of public law 88-164, expanded earlier provisions for

federal support in the education of certain categories of handicapped children, including

the blind. Because only 5 percent o f the blind population had no sight, the others with

some residual vision made up the majority o f the blind, the individuals who could pass

for sighted by moving about without the use of a cane or dog, but teachers did not know

what to do with these partially-sighted students. According to Ferrell (1956), "There is

no argument about those who meet the dictionary definition of sightless. There is,

however, considerable room for argument as to where the line is to be drawn in the field

of limited vision. How much loss of sight makes people physical, educational, economic,

and social problems?" (p. 205). These changes led to what is now referred to as

mainstreaming, which is the focus of the next section.

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Contemporary Issues in Literacy for the Blind

As mentioned in Chapter 1, quantitative data on Braille literacy illustrates that the

number o f blind children learning to read and write in Braille decreased significantly with

the onset o f mainstreaming in the 1960s and 1970s. The number of blind persons who

read Braille dropped from 52 percent in 1963 to 18 percent in 1978 (Rex, et al., 1994).

As mentioned earlier, American Foundation for the blind records illustrate that only 12

percent o f blind students read Braille in 1991 (as cited in Johnson, 1996), and the current

rate is estimated at approximately 9 percent.

While the start of the decline in Braille literacy corresponds with the time when

mainstreaming blind children began, the effects of this change were not realized until the

late 1980s (Jemigan, 1987; Spungin, 1989), shortly after the National Organization of

Parents o f Blind Children (NOPBC) was established in 1986. The blind and some of the

parents o f blind children began talking about a Braille literacy crisis, much like the

general public talked about a literacy crisis for sighted children (Scribner & Cole, 1988).

Many mainstreamed blind children lacked enough sight to read print, and yet they were

not learning Braille in the public schools. At that time, with the unemployment rate for

the blind at 70 percent (Johnson, 1996) and the number of employed blind who used

Braille at 85 to 90 percent (Poppe, 1991; Spungin, 1989), the blind understood the

significance o f this positive correlation and fought for legislation to ensure that blind

children would leam Braille. While The Education for All Handicapped Children Act,

now known as the Individuals with Disabilities Education Act (Idea) had passed in 1975,

which was meant to ensure a free appropriate education for all disabled children, the

number o f children learning Braille continued to decline. The NFB wanted legislation

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that would mandate special assessment or instruction in Braille (Koenig & Holbrook,

2000). Almost 20 years later, many of the blind are still fighting for Braille legislation.

They believe that Braille is one of the many tools that blind children will need to succeed

in life. For many o f the blind, Braille (cultural capital) leads to jobs (economic capital) as

defined by Bourdieu (1991).

By the 1970s, at the time when literacy began to replace the traditional view of

reading and writing (Lankshear & Knobel, 2003), the majority of blind children were

being mainstreamed in the public schools. With the work of Freire (1993), the idea that

unjust social relations caused illiteracy began to dominate mainstream thoughts. Like

some teachers o f other minority populations, teachers of students with disabilities often

times fail to see the considerable cognitive competencies children with disabilities

possess (Meacham, 2001). He writes, "In a manner similar to the deficit discourse, the

non-mainstream population is perceived only in relationship to the mainstream norm.

That conception of norm stands implicitly superior, as it is almost never questioned or

critiqued, except for its limited openness to cultural diversity" (Meacham, 2001, p. 191).

With the decrease in Braille literacy, organizations of the blind argue that

concepts of normalization contribute much to the inferior education of the blind.

According to Schroeder (1989), the former director of the Department of Rehabilitation

under the Clinton administration, many blind people believe that the real cause o f the

lack of literacy in the lives o f the blind is rooted in societal stereotypes and

misconceptions about blindness. If parents and teachers doubt the abilities of blind

children, they may lower their expectations, as they did in the early part of the twentieth

century when sight meant intelligence (Koestler, 1976). Schroeder argues that the

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attitude persists that to be blind is to be dependent and inferior, whereas to be sighted is

to be normal.

Because the majority (99 percent) of the people in society have sight, blindness is

not considered normal. Like teachers who have used oralist instruction for deaf children

(Baynton, 1996), many teachers of the blind use sighted techniques for literacy

instruction. According to Davis (1995), "normalcy and disability are part o f the same

system" (p. 2). Davis claims that the problems between the deaf and blind are different,

as Braille is merely the translation of English and sign is another language, but both the

deaf and the blind have encountered normalizing strategies from doctors, blindness

professionals, teachers, parents, and even themselves.

Gore (1998) defines normalization as "invoking, requiring, setting or conforming

to a standard in fitting the normal" (p. 237). Normalizing strategies from others push

disabled people to struggle to be normal. Thompson (1997) writes, "If disabled people

pursue normalization too much, they risk denying limitations and pain for the comfort of

others and may edge into the self-betrayal associated with 'passing'" (p. 13). The purpose

of mainstreaming was not to normalize children with disabilities but instead was to

integrate them into the public schools and still recognize their differences. However, this

process often fails for blind children. When blind children attend residential schools,

they are viewed as blind. With mainstreaming, blind children face the pressures of

normalization. Popkewitz and Brennan (1998) argue that "The very systems o f reasoning

that are to produce equality, justice and diversity may inscribe systems of representation

that construct otherness through concrete pedagogical practices that differentiate,

compare, and normalize children along a continuum of value" (p. 68).

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While many of the blind have blamed concepts of normalization for the decrease

in literacy, some researchers investigated other causes, including the least restrictive

environment for blind children. Parents decide to send their blind children to residential

schools for the blind or to public schools, and the decision can be a difficult one, as many

parents believe neither option offers the skills and tools that their children need to

succeed. Also, researchers argue over which setting offers the least restrictive

environment for literacy instruction. Rex and Richesin (1990) assert that full inclusion

causes the greatest threat to literacy for the blind, as it decreases the availability of

individualized instruction. Johnson (1996) asserts that the decision of which classroom is

the least restrictive environment needs to be looked at on a case by case basis. According

to Johnson, "I believe that we go too far if we insist that all children attend their

neighborhood school, even at the expense of their education. Surely we can arrange it so

a child can be home at night and yet attend a classroom more designed to fit his or her

needs" (p. 276).

Most studies on literacy for the blind focus on Braille. As mentioned earlier,

many blind children in mainstream classrooms are not learning Braille. In 1988, 81

percent of legally blind children were attending public schools, and it is estimated that the

number has not changed much since that time. Even if schools offer Braille, most blind

children in public schools today work with itinerant teachers who come to the schools

only two or three times a week for an hour or two. The children are taken out of the class

to work on Braille (Mullen, 1995). While the blind children work on reading skills

between two and six hours a week, their sighted counterparts use reading skills every day

in almost every subject area.

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While Braille is used more in schools for the blind than in public schools, the

students who attend residential schools often are not prepared for the work force.

Fireison and Moore (1998) conducted a survey on the effects of schooling on job

placement for the blind. They found that people who were educated in schools for the

blind had better reading and writing skills than those who were mainstreamed, but blind

adults who attended public schools had higher paying jobs. For economic reasons,

children with multiple disabilities are served in residential schools for the blind, including

those with limited intellectual capacities. Due to limited resources in the schools, blind

children may not get a top-quality academic education. While more graduates of the

residential schools in Fireison and Moore's study were employed, many of them worked

for National Industries for the blind, otherwise known as sheltered workshops, and many

made less than minimum wage.

With the advances in technology for the blind over the last 20 years, including

adaptive speech equipment, scanners, and Braille embossers, many of the blind argue that

Braille should be used now more than ever before in the classrooms with blind children.

If used correctly, Braille embossers could increase Braille literacy for the blind, much

like the printing press increased literacy for the sighted in the 17th century (Heath, 1991.

Technology makes it possible to print Braille materials in only minutes. However, with

the technology, some teachers think Braille is no longer necessary (Wittenstein & Pardee,

1996). Rather than using the technology for printing Braille, many teachers use

technology that works with their sighted instruction, such as computer magnification

programs, which may cause slow and cumbersome reading for blind children, just as

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30

raised letters caused slow and cumbersome reading for blind children in the latter part of

the 18th century.

While magnification programs and Braille are not the only methods for accessing

the printed word, listening to the spoken word with talking books or voice synthesizers

does not constitute reading for many of the Blind (Leies, 1999; Maurer, 1992; Rex et al.,

1994; Schroeder, 1996; Vaughn, 1993). Supporters o f Braille for blind children view it

as a tool, a method of gaining access to the printed word in order to interact with the text

and to participate in classroom activities. However, even when Braille is included in

Individual Educational Plans (IEP), many students in the public schools do not receive all

of the services listed (Fireison & Moore, 1998).

Like many teachers who doubt their abilities to teach children from culturally and

linguistically diverse backgrounds (Ball, 2000), the research indicates this problem with

teachers o f the blind. Poppe (1991) conducted a survey o f teachers of blind children,

which indicated that while teachers supported the use of Braille (67 percent), many felt

incompetent in their teaching skills (63 percent). In response to Poppe's (1991) study,

Wittenstein (1994) notes that training teachers of the blind in only the Braille code is

analogous to training teachers o f the sighted in only the alphabet. He asserts that teachers

in pre-service programs need to learn the methods for teaching Braille. Learning the

code is not enough.

Many studies reveal the importance of Braille literacy. Rex et al. (1994) assert

that blind children need individualization, concreteness, and unified instruction. They

highlight the importance of children to use Braille for learning syntax, grammar, and

spelling. Sighted children recognize word and sentence structures with their eyes (Street,

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31

1995), but most blind children cannot do this. In spite of the differences between Braille

and print, Rex et al. (1994) argue that more similarities than differences exist in

development of language and concepts for sighted and blind children. Similarly, Lamb

(1996) states that the reading process and the skills required for success are the same for

print and Braille readers. For these reasons, they argue that sighted and blind children

could be taught together in the same classroom, using different tools for reading and

writing.

Very few studies on the literacy o f the blind include the perspectives of parents of

blind children or o f the blind themselves. One study revealed that the majority of

teachers of the blind (59 percent) did not agree that legally blind children should learn

Braille, even when parents wanted their children to learn Braille (Wittenstein & Pardee,

1996). In that study, only 21 percent of the teachers supported the use of Braille. A 1991

interview with Carol, the mother of Cyrus, a blind six-year-old, reveals that she was told

that Braille was obsolete and that she shouldn't make her son learn it. According to

Carol, the itinerate teacher said, "You don't want your child to stick out and appear

handicapped; you want him to appear normal" (Scally, 1991). Carol was told that her son

would not be taught Braille until he was in the third grade. When she started teaching

Cyrus Braille herself, one teacher's aid accused her of cruelty because she was "pushing

her son into Braille at such an early age" (Scally, 1991).

Very few extensive qualitative studies of out-of-school literacies of the blind

exist. Mack (1984) interviewed 30 adult blind Braille users. Mack argued that teachers

should focus on alternatives to Braille instruction. She concluded, "In addition to

teaching Braille skills, other skills should be given equal, if not more attention" (Mack,

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1984, p. 313). Another study by Schroeder (1996) examined the decline in Braille

literacy by interviewing eight adults (all in their forties) about their past experiences.

Schroeder illustrates the connections between the decrease in Braille literacy and the

unemployment o f blind adults. He also notes the relation between positive self-esteem

and Braille. However, Schroeder's study was limited in the number of informants and the

literacy environments.

While the majority of research on literacy for the blind focuses on Braille, Rex

(1989) found that among the blind adults in training centers, 36 percent were auditory

readers, 31 percent were Braille readers, 12 percent were print readers, and 10 percent

were non-readers. For those who cannot read print or Braille, oral transmission o f texts is

an important mode of literacy. Blind readers use live readers, recordings, and computers

with synthesized speech. Many blind readers use the oral-aural mode for accessing the

printed word; however, as indicated earlier, many of the blind believe that Braille is

necessary for literacy. While I agree that Braille can be of vital importance in the lives of

many blind people, I argue that all modes of literacy available to the blind need to be

considered in order to understand what literacy means for blind individuals. We need to

examine the ways literacy is being used in various social contexts from the perspectives

of the people we are studying (Freebody, 1992; Street, 1995).

As demonstrated above, most research on literacy for the blind has used

quantitative data obtained from governmental and rehabilitation agencies, which cannot

explain how literacy is being used in homes, schools, work environments, and

communities; has discussed the best methods for teaching Braille to blind children and

/or adults without using informants in the studies; and/or has used surveys to gather

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information from parents and/or teachers, leaving out the voices of the blind themselves.

While what is referred to as Braille literacy has been examined in school settings to some

degree, few studies have examined literacy for the blind in other settings. The review of

the research reveals that past studies fail to view literacy in terms of social context, and

this study aims to change this trend by interviewing blind people about their literacy

experiences at home, in school, at work, and in the community using current literacy

theories, which will be describe in the next section.

Theoretical Framework

Before the 1980s, educational researchers primarily used traditional approaches to

literacy research, including quantitative models (Erickson, 1986). Heath's 1983

ethnographic study of language patterns and effects within the community, home, and

school settings across social groups prompted the push for the sociocultural approach for

literacy studies, as well as sparked interest in ethnographic strategies in literacy research

that could explore the diversity of beliefs and motivations for literacy in people's lives.

According to Lankshear (1999), we need "ethnographic studies interested in local

communities in order to engage with educationalists interested in literacy acquisition and

with policy makers in general" (p. 51). The work of Street (1995) and Gee (1996)

expanded on the ideas of ethnographic techniques in literacy research. Street (1995)

recommends that literacy research includes an ethnographic component, including

interviews and observations on local populations. He asserts that "Ethnography of

literacy practices is beginning to explore the associations between cultural conventions,

literacy practices, notions o f self, person and identity, and struggles over power (p. 119).

According to Street (2003), an ideological model o f literacy offers a more culturally

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sensitive view o f literacy practices as they vary from one context to another. Similarly,

Gee (1996) asserts that reading and writing can only be understood in the context of the

social, cultural, political, economic, and historical practices to which they belong.

According to Gee, literacies are connected to social identities. This social view focuses

on literacy contexts and tries to understand how literacy is used in everyday lives.

Since the work o f Gee and Street in the early 1990s, many literacy researchers

have combined social settings with analysis using the New Literacy Studies, which has

become a popular approach among literacy researchers in the past decade (Barton &

Hamilton, 1998; Brandt, 2001; Gee, 1996; Street, 1995). The New Literacy Studies has

shifted the focus away from categories of people, such as the literates and the illiterates

and instead links literacy to social and cultural practices. Rather than viewing literacy as

skills and competencies, the New Literacy Studies researchers describe literacy as an

integral part of social events and practices (Maybin, 2000), which are shaped by social,

cultural, historical, and material contexts (Barton & Hamilton, 1998; Gee, 2000; Street,

1995; Tusting, 2000).

Barton and Hamilton (1998, 2000) state that a social theory of literacy includes

practices, texts, and events and argue that people's literacy practices are situated and

incorporate past values, attitudes, and social relationships. They start with literacy

practices as the basic unit o f analysis. They write, "In the simplest sense literacy

practices are what people do with literacy" (Barton & Hamilton, 1998, p. 8). They argue

that literacy practices cannot be observed because they are based on past experiences and

relationships. According to Barton and Hamilton, literacy practices take place in the

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relations between people rather than in the lives of individuals. They list six properties

for literacy as social practice:

1. Literacy is best understood as a set of social practices.

2. There are different literacies associated with different domains of life.

3. Literacy practices are patterned by social institutions and power relations and

some literacies are more dominant, visible, and influential than others.

4. Literacy practices are purposeful and embedded in broader social goals and

cultural practices.

5. Literacy is historically situated.

6. Literacy practices change and new ones are frequently acquired through processes

of informal learning and sense making as well as formal education and training.

(Barton & Hamilton, 1998, p. 9)

The New Literacy Studies researchers use three levels of analysis —individual

activities, understandings, and identities; social events and the interactions they involve;

and broader social and institutional structures (Maybin, 2000). While many studies have

focused on the domains of home (Barton & Hamilton, 1998; Heath, 1983), school

(Barton, 2000; Ormerod & Ivanic, 2000; Pardoe, 2000), work (Gee, 2000; Hull, 2001),

and community (Barton & Hamilton, 1998; Street, 1984; Wilson, 2000), change and time

also can be defined as domain (Tusting, 2000). Change and time allow us to see "the

evolution o f dominant literacy practices and the development of literacies within wider

social and cultural change" (Tusting, Ivanic, & Wilson, 2000, p. 217). By using ideas

from New Literacy Studies researchers to look at the life histories of blind individuals,

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36

we can see the ways literacy works in all areas o f their lives rather than focusing on

institutional literacy, such as school (Barton & Hamilton, 1998).

Brandt's (2001) Literacy in American Lives reveals that reading and writing

occurs under different conditions at different times. In her study of a rural community in

Wisconsin, she explored the value placed on reading and writing in different contexts.

As already stated in Chapter 1, she focused on sponsors of literacy in people's everyday

lives. To Brandt, individual literacy is part o f a social system that enables reading and

writing and determines their value (p. 1). Like Brandt, this research will look at literacy

as social practice, focusing on the three main aspects she studied, including literacy

learning, literacy development, and literacy opportunity (p. 7). When referring to literacy

learning, Brandt includes more than school literacy by looking at home, work, and

community. Literacy development includes the ways literacy evolves over time in

relation to historical events and the life span. Finally, literacy opportunity refers to

people's "relations with social and economic structures that condition chances for

learning and development" (p. 8).

Some research using a New Literacy Studies framework has drawn on other

theories and disciplines, including discourse analysis. According to Foucault (1977,

1978), nothing has meaning outside of discourse, including power. For Foucault, power

is not possessed but exercised in relations between people (Haleprin, 1995; Luke, 1996.

According to Halperin (1995), "Power is a dynamic situation, whether personal, social, or

institutional: it is not a quantum of force but a strategic, unstable relation" (p. 16).

Foucault argues that the introduction of examinations created discourses of power and

concepts o f normal. He writes, "All the authorities exercising individual control function

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according to a double mode; that of binary division and branding (mad/sane;

dangerous/harmless; normal/abnormal)" (p. 199). Foucault argued that these binary

oppositions lead to a way of categorizing and judging others. These examinations

became a form o f discipline that led to power over those who were being examined, such

as the blind. Foucault maintains that rather than studying individuals, one needs to study

concepts. In this case, rather than examining the blind, researchers should be looking at

blindness. After all, blindness is not a medical problem but a social issue.

Fairclough, 2001) argues that Foucault's theory was limited, as it is "not

operational in the analysis of particular instances of discourse" (p. 10). According to

Fairclough, we need to analyze "the relationships between texts, processes, and their

social conditions, both the immediate conditions of the situational context and the more

remote conditions o f institutional and social structures" (P 21). Gee (1999) argues that

method and theory cannot be separated; Critical discourse analysis combines theory and

method to work together simultaneously. A critical approach to discourse attempts to

link the texts (micro-level) to the underlying power structures in society (macro-level).

Critical discourse analysis can illustrate how social relations, identity, knowledge, and

power are constructed through written and spoken texts (Luke, 1997). Gee (1999) and

Fairclough (2001) assert that all discourse is political. Critical discourse analysis helps

explore the hidden power relations that exist at the local, institutional, and societal levels.

According to Gee, language is always connected to the past and current contexts. He

writes, "words have histories.. .Words bring with them as potential situated meanings all

the situated meanings they have picked up in history and in other settings and

Discourses" (Gee, 1999, p. 54).

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My research on the literacy o f blind and visually impaired individuals in the San

Francisco Bay Area draws on the above research, using a sociocultural approach

influenced by the New Literacy Studies and critical theories. Particularly, I use the ideas

of Barton and Hamilton (1998, 2000) by thinking about the ways literacy is used in

people's everyday lives and Brandt (2001) by constantly considering issues of access,

control, and power in the lives o f my informants. In the next chapter, I will provide

information about the informants and the setting for my study, as well as explain the data

collection, the data analysis, and my role as researcher.

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CHAPTER 3

METHODOLOGY:

THE BAY AREA AND THE BLIND

This study focuses on the literacy practices in the lives of 30 blind individuals

who live in the San Francisco Bay Area, looking at the ways their past experiences have

shaped their literacy practices today. In this chapter, I describe the informants and the

ways I explored the community. After explaining the type o f research techniques used

for the study in the first section, I provide a brief history and demographic information o f

the San Francisco Bay Area. Next I include sections on the informants, the data

collection and data analysis, and my role as researcher.

Research Techniques

This research draws on ethnographic traditions, case studies, and oral histories.

Ethnographic techniques have become a popular approach used in literacy studies

(Bishop, 1999; Chiseri-Strater & Sunstein, 2002; Gee, 1996; Merriam, 1998; Szwed,

2001). Moll, Amaanti, Neff, and Gonzalez (1982) argue for a combination of

ethnographic observations, open-ended interviewing strategies, life histories, and case

studies that will illustrate the complex functions within their socio-historical contexts.

Moll (2000) suggests that ethnographic studies use culture as practice in an attempt to

transform social educational reality. Likewise, Szwed (2001) stresses the importance of

researchers using ethnographic techniques such as observing literacy practices in a

person's own domain and examining what effects reading and writing. Green (1991)

stresses that researchers need to have "careful, socially-sensitive ethnographies of literacy

practice across a wide range o f situations and settings" (p. 231). Combining these ideas, I

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used many of the same data-gathering techniques, including observing, taking field notes,

keeping a reflective journal, collecting artifacts, interviewing, and audio-taping in the

informants' homes, schools, work and/or community environments in an attempt to

understand the diversity in the literacies o f the blind. By using ethnographic case studies

(Merriam, 1998) guided by a New Literacy Studies framework (Barton & Hamilton,

1998,2000, Brandt, 2001, Street, 1995), I hope to illustrate what literacy means to the

blind and the values, beliefs, and interactions in their various literacy practices, as well as

expose the power relations that exist in their lives.

Research Setting

Since the California Gold Rush o f 1849, the population of San Francisco has been

growing at a fast pace. After the rush, many people settled in the Bay Area, and others

relocated when the railroad reached California in 1869. By 1870, San Francisco was the

tenth largest city in the United States. At that time, Chinese, Irish, Italian, French,

German, Russian, and Australian immigrants settled in the area. Even with the San

Francisco earthquake and great fires of 1906, the city was rebuilt and continued to

expand.

Today, the San Francisco Bay Area is rich with a diversity of cultures and

languages. According to the U.S. census data o f 2000, approximately 7,000,000 people

live in the Bay Area. (The Bay Area has the highest population density aside from New

York City.) In San Francisco proper, the population is made up of approximately 49

percent Caucasian, 8 percent African-American, 31 percent Asian, and 12 percent mixed

or other races. Of that population, 14 percent identify as Hispanic/Latino. Across the

bay in Oakland, the population is made up of 31 percent Caucasian, 35 percent African-

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American, 15 percent Asian, 5 percent two or more races, and 14 percent other races. In

Oakland, 21 percent o f the people identify as Hispanic/Latino. In the Bay Area, 73

percent o f the citizens are natives of the United States and 26 percent are foreign bom. If

the overall population is correct, then approximately 35,000 blind and visually impaired

people live in the region, as it is estimated that 0.5 percent of the overall population is

labeled as legally blind.

In the 1990s, the dot-com boom caused an increase in the population o f the San

Francisco Bay Area, but it also caused in increase in rent and displaced thousands of

working-class people. Many people claim that the Internet invasion destroyed the things

that made San Francisco wonderful (Borsook, 1999). In many areas of the city, the cost

o f living rose 42 percent from 1997 to 1999. Still, blind and visually impaired

individuals continue to move to San Francisco, as they believe it has a lot to offer.

Berkeley was the center o f the disability rights movement in the 1960s and 1970s, and

many people refer to the Bay Area as "blind friendly."

In the Bay Area, many banks have talking ATM machines and the San Francisco

Public Library provides hand-held controls that will read the signs in the building.

Several o f the busy intersections have audible traffic signals that will chirp and tweet

when the light turns green. In San Francisco, a few of the movie theaters offer

descriptive video. The public transportation system has a lot to offer persons with

disabilities, including the Bay Area Rapid Transit (BART), city train services, bus

services, ferries, taxis, and two accessible airports. A wide range of state, county, city,

and nonprofit disability services are located in the Bay Area. Plus, with the large

population, blind people can make connections with other blind people. Recreational

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programs offer travel companions so that blind people can go skiing, hiking, and cycling.

Each week, groups o f blind people meet in Oakland to learn to dance, and another group

meets in Berkeley to play goal ball.

While weather and transportation were listed as the top two reasons for the

informants to move to or stay in the Bay Area, independence and freedom came up in

many conversations. With all that the Bay Area has to offer blind individuals, many of

the informants said that the San Francisco Bay Area provides independence. Akiko who

moved from Japan said, "I feel more freedom." Gloria, who relocated from southern

California, echoed Akiko's words, saying, "I have a lot more freedom here." In the next

section, I will provide more details about these and other informants.

Research Informants

"I think in the Bay Area that, there's a perception at least, that of a disability

community. You know, the independent living movement started here. You know

Jacobes TenBroek and the organized blind movement started here. Berkeley and San

Francisco tend to profess themselves as being more liberal and accepting," said Dawn, a

27-year-old woman originally from Colorado, stopping to take a sip of water. After

setting her water bottle back down on the coffee table in front o f us, she continues. "You

know, I don't want to go into my whole philosophy about why I think a lot of stuff is sort

o f perception.. .but you know there are definitely better sort of services here than where I

come from in Colorado and that means a lot and it also means a lot to me that I know

where to find other disabled people.”

Barton and Hamilton (1998) discuss the problems with the term community.

Originally for their study, they defined a community in geographic and social class terms.

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While this study looks at a particular geographic region, the informants for this study

come from very different backgrounds. While all the informants said they moved to or

stayed in the San Francisco Bay Area for school, jobs, good transportation, and/or good

weather, like Dawn, most agreed that a sense of community among the blind exists in the

area. This type o f community differs from the traditional type o f community, as these

informants live in various geographic regions in the Bay Area. Also, the informants

come from various social, cultural, and economic backgrounds and have varying degrees

of vision loss. Still, they are a community in the sense that they have faced similar

barriers, including access to literacy.

For this study, I found 30 informants ranging from age 16 to 93, which can be

broken down into five categories: high school students and recent high school graduates

not attending college, college students, younger working-age adults, older working-age

adults, and seniors. In order to use a maximum variation sample selection (Merriam,

1998), I interviewed an equal number o f male and female informants, and I attempted to

represent the demographic diversity in the San Francisco Bay Area according to the US

Census Report o f 2000. Of the 30 informants, 13 classified themselves as Caucasian, 6

classified themselves as Asian, 6 classified themselves as Hispanic or Mexican

American, 3 classified themselves as African American, 1 classified herself as African,

and 1 classified himself as Arab American. Nine of the informants were bom in

countries other than the United States, including Mexico, Hong Kong, Japan, the

Philippines, India, and Ireland. (See Appendix A for this and other personal data on the

informants.)

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In order to find the diversity of informants, I contacted groups of and agencies for

the blind, including the California Council of the Blind, the National Federation o f the

Blind of California, the American Foundation for the Blind, the San Francisco

Lighthouse for the Blind, the Orientation Center for the Blind, the Lions Center, the

California School for the Blind, the Blind Babies Foundation, Through the Looking

Glass, and various independent living centers. In this sense, I used purposeful sampling

(Patton, 1990) by making phone calls and sending out emails requesting contact

information for blind and visually impaired individuals who matched the demographic

diversity for this research. I wanted a representative group o f informants in terms o f age,

gender, and ethnicity by using network sampling (Merriam, 1998). I also sought out

informants who could expand on the information received from the original key

informants.

O f the 30 informants, I knew 4 as friends before this study and I contacted all of

them by phone to ask if they would participate. I knew another seven informants as

acquaintances, as I had met them a few times before my interviews with them, including

a few at an Irish pub in Berkeley while watching the presidential debates between George

Bush and John Kerry. While the data collection did not start until the following summer,

I kept a mental record o f people who I might want to contact at a later date, and in some

ways, my mental data collection started as soon as I moved to the Bay Area in June of

2004. A few of these acquaintances contacted me, as they had read an email that was

sent to and distributed by the four friends and by administrators and teachers at various

training centers. I met the other 19 informants for the first time at the initial interviews.

Like the acquaintances, many o f these informants had received the email requesting their

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participation and sent their contact information. I received a phone call from one

administrator who had read my Email to a group of blind seniors and wanted to give me

the contact information for a man who expressed interest in participating.

Data Collection and Analysis

Of the initial interviews, 17 took place in the homes of the informants, and for

these I used BART and cabs to travel to San Francisco, Union City, Pleasanton, Dublin,

Pleasant Hill, Oakland, Berkeley, El Cerrito, Richmond Annex, and Richmond. Most of

the informants welcomed me into their homes with open arms, and many enthusiastically

showed me their computers and other reading and writing tools and/or their shelves of

Braille or tape books. At the request of the other informants, six interviews took place in

restaurants in San Francisco and Berkeley, two took place at places of employment, two

took place in my home, two took place over the phone, and one took place at a training

center for the blind. All follow-up interviews took place over the phone, as my time in

San Francisco was cut short due to a second cross-country move, this time from

California to Virginia. In these follow-up interviews, I questioned the informants on my

accuracy o f my interpretations of their literacy practices.

Erickson (1986) suggests that the two best ways to avoid ethical problems in

ethnographic research are for researchers to describe to the informants, in as much detail

as possible, the purposes and activities for the study, and to protect informants from risks.

Therefore, I explained the research to my informants and had them sign consent forms

that had met IRB approval. After discussing the consent form and having the informants

sign above the scotch tape signature guide that my reader had placed on the forms, I

audio taped the interviews.

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The first round of interview questions focused on the informants' backgrounds

and their literacy experiences at home, in school, at work, and in the community (See

Appendix B). I started the interviews with personal questions about date of birth and

family backgrounds. (Only 1 of the 30 informants asked me to move on to the questions

about literacy, as she wanted to avoid any questions about her father.) Then, using a

semi-structured interview format, I asked a combination of structured, open-ended, and

semi-structured questions, which allowed the informants to elaborate on their past and

present literacy experiences and me to ask for more detailed information (Merriam,

1998).

The majority of the initial interviews lasted between one and two hours and all the

interviews were audiotaped. The shortest interview, lasting only forty minutes, occurred

with an informant who used English as his second language. I transcribed the interviews

within 72 hours after they were conducted in order to keep them fresh in my mind and to

avoid errors. As I transcribed, I noted similarities and differences in the experiences of

the informants and place marks by the quotes and passages I knew I would want to use

later.

The second round of interviews occurred with 12 of the informants and the

interviews were conducted after the first set of interviews had been transcribed and

patterns and themes had emerged. The focus of these questions stemmed from the first

round of interviews and allowed for member checking (Chiseri-Strater & Sunstein,

2002). During this round o f interviews, informants were asked to expand on their

previous answers by responding to hypothetical and interpretive questions (Merriam,

1998) to help identify the ways in which their literacy experiences influenced their

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identities. I continuously added to the literature review to elaborate on patterns and

themes (Glesne, 1999).

During the period of data collection, I kept a reflective journal, gathered artifacts,

and took field notes. The reflective journal helped identify my own subjectivity (Chiseri-

Strater and Sunstein, 2002). The artifacts consisted of Email correspondence, online

journals, podcasts, and articles that I learned about during the interview process. Several

of the informants communicated with me by email and a few continue to keep in touch

today, even though I am no longer living in the Bay Area. Sections of the online journals

kept by a few informants, pod casts produced by a few informants, and articles about

various informants and articles written by a couple of informants were downloaded and

added to my collection of data.

Because I found it difficult to take field notes while interviewing, as I was using

my Type 'n Speak to listen to the questions as I simultaneously read them to the

informants, I started taking down every memory as soon as I left the locations of the

interviews. Quite often, those notes were written on the BART train as I headed back to

my home in El Cerrito. Many of my other observations were informal, taking place at

public events, organized meetings, parties, social gatherings, and activities for the blind.

I participated in such literacy events with all but eight of the informants. I invited small

groups o f informants to various events in the community or for dinner at my house. The

largest gathering occurred at my annual Leo Birthday Bash. I invited 13 of the

informants and 12 of those 13 came. Not surprisingly, several informants had met or had

heard of each other before the party. All the interview transcripts, articles, pod casts,

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Email correspondence, field notes, and reflective journal entries were stored on the

computer in my home office.

While collecting the data and again after all the data had been collected, I read

through the transcripts, the field notes, the reflective journal entries, and the written

artifacts multiple times and ways to determine patterns and themes (Merriam, 1998).

These patterns and themes became my coding categories for the dissertation. Initial

categories were broad, starting with home, school, work, and community literacy, both

past and present. In order to move to more specific topics, I looked for similarities and

differences among the informants' experiences. I began to notice the repetition o f words

that were used by several informants and how those words were being used. As I read

more and more, including the transcripts and other literature, the coding categories

continuously emerged and changed. Using Gee (1999), I looked at the language that the

informants used to describe their literacy, as well as what their statements said about

identity. At a certain point, I no longer had to skim through the transcripts to find

particular passages or quotes, as I remembered exact words that the informants said, so I

would just search for those words. By the end of coding the data, not to mention calling

some informants to ask additional questions, I felt as though I knew and understood

literacy in the lives of these informants.

In analyzing and writing up the data, I used several ideas from Bishop (1999) and

Sunstein and Chiseri-Strater (2002), as well as Barton and Hamilton (1998). Barton and

Hamilton (1998) describe vertical slicing as looking at one person, which "leads to a

profile of that person and their relationship between practices and their overall coherence

to that person" (p. 70) and a horizontal slice as "everything about one concept and how it

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is realized across a range of people" (p. 70). I used these strategies, so several sections of

the chapters focus on one informant, while others include information from several

informants. For example, in Chapter 4, vertical slicing provides profiles of the lives of

four individuals by looking at the literacy practices of each person over time, while in

Chapter 5, horizontal slicing takes all 30 cases into account and focuses on different

topics related to early literacy learning.

Role as Researcher

While I must admit that the setting for this study sort of fell in my lap, as my

husband decided to take a job in San Francisco just as I was finishing up the course work

for my degree, San Francisco turned out to be the perfect place to interview blind and

visually impaired individuals, partly because of the number of blind people who live

there and partly because I as a blind person was able to travel independently to all of the

interviews and observations. Plus, I had spent a month in San Francisco when I was just

17 years old, before I lost my sight, so I had visual memories of the geographic region.

As I traveled to an interview in Pleasant Hill, I recalled an afternoon of sitting in the

hundred degree sun by the swimming pool in Orinda, watching the beads of sweat form

on my bare legs and arms, only to be clenching my jacket as I stood on the Golden Gate

Bridge watching the sun set over the Pacific a few hours later. I remembered riding

through the Caldicott tunnel in my friend Jessica's little red sports car, seeing the

headlights o f the oncoming cars and being almost blinded by the sun when exiting. As I

headed over to San Francisco, I envisioned the beauty of the rolling hills and the cliffs

and the ocean liners and sailboats floating on the endless miles of blue water. I

remembered everything, each and every moment of my time in the San Francisco Bay

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Area as a 17-year-old sighted girl, but this was my first time to see it as a blind person.

In fact, I would have to say this was my first time to really see it, to hear, touch, taste,

smell, and experience.

In my role as researcher, I fell somewhere between participant and observer

during the data collection process. On the one hand, I have to wonder how I could not be

an active participant in this study because of the fact that I am blind. On the other hand, I

have learned that no blind person is the same and that I continuously am learning new

things about blindness. Before the interviews, 17 of the 30 informants knew about my

blindness because they knew me or they had heard about me and my research through the

blind community grapevine. The other 13 had not realized I was blind until I showed up

at the first interview. Most o f them seemed relieved at knowing this and a few stated that

they were glad they would not need to provide the details of each literacy tool they

mentioned. However, a few seemed a little reluctant to talk to me with this knowledge,

more than likely because o f the small size o f the community.

Because tensions exist between the two main blindness consumer organizations,

the National Federation o f the Blind and the American Council of the Blind, I avoided

this topic in the interviews and only asked questions about involvement if the informants

brought up the topic in responding to other questions. Except for those few informants

who were reluctant to open up to me, the majority of the informants and I were able to

talk more like friends rather than interviewer and interviewee. This was not intentional;

it just happened. Occasionally, I would respond to a story of one o f my informants by

telling them a story of my own. This often lead to more memories, more stories, and,

frankly, more transcribing.

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I want to clarify one thing before my readers start to question the thoughts and

ideas in the next several chapters. I am not an expert on history. I am not an expert in

special education. I am not an expert in rehabilitation counseling. I am not an expert on

blindness in other countries. I am not an expert in assistive technology. I am not an

expert in disabilities studies. Even though I am blind and working for my Ph.D. in a

Language, Literacy, and Culture program, I am not an expert on the topic I am

researching. I am one person who believes that in order for people to become experts in

any o f these fields, they need to hear the collective voices of the individuals they are

studying. In doing this research, the ideas, words, and voices of these informants

infiltrated every part of my life. I began to eat, sleep, and dream of these informants. My

hope is that after reading their stories, parents, teachers, rehabilitation counselors, and all

those who believe they are experts on blindness and/or the blind will hear and listen to

the voices o f these real experts, starting with the next chapter, which looks at the life

histories of four informants ranging from age 77 to 17.

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CHAPTER 4

LITERACY FOR THE BLIND:

LOOKING AT FOUR LIVES

Adelle was bom in 1927 in a small town in New York, the last o f four children.

During her childhood, she was not read to, except for the religious pamphlets that her

mother received from faith healers. When Adelle was six years old, her parents sent her

to a residential school for the blind several hours away from their home, where she

learned to read and write Braille using a slate and stylus. During summer and Christmas

holidays, Adelle became bored, as she had access to only a few Braille books that were

sent to her by library services, and she did not choose the books she received. After

graduating from high school, attempting a few jobs, and going to college, Adelle used a

standard typewriter, Braille note cards with medical terms, and poor quality recorders in

her life-long career as a medical transcriptionist, one o f the few jobs available for blind

individuals at the time. Today she spends her time listening to NPR on the radio and

using her computer to write political letters on human and animal rights.

In 1987, 60 years after Adelle was bom, Beth was bom in the Philippines. The

public school did not have the materials to educate a blind child, and the school for the

blind was too far from her home and too expensive for her father, so Beth stayed at home.

She watched children's television shows in her native language o f Tagalog, which taught

her to say her letters and numbers. Finally, when Beth was nine years old, she moved to

San Francisco with her father and started school, where she learned Braille using a

Braille Note and a refreshable Braille display. At home, Beth works on homework, chats

online, watches TV, and downloads books from Webraille for enjoyment, most recently

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Harry Potter and the Half-blood Prince. After graduating from high school, Beth would

like to attend college to become a teacher of the blind or an environmental planner.

Over the last several decades, the concept of literacy has been changing for

everyone. Sighted people went from using chalk slates or pencils and paper to using

digital recorders and laptop computers for their everyday literacy. Similarly, as

illustrated in the above accounts, blind people went from using slates and styluses to

Braille Notes with synthesized speech programs and refreshable Braille displays. When

Adelle attended school, blind children lived in residential schools where they used slates

and styluses to read and write Braille, which had just been established as the system that

would be used in the United States. The slate and stylus became the main literacy tools

in Adelle's life. At the time, many blind adults worked in sheltered workshops, and

Adelle's career options were limited. Sixty years later when Beth started attending her

local school, she learned Braille, but she used a variety o f literacy tools to read and access

documents, excluding the slate and stylus. Her career options are almost unlimited. But

have these new technologies changed literacy? Or have they only changed access to

literacy?

Barton and Hamilton (1998) have used life histories to study literacy practices in

people’s everyday lives, as described in the following:

A person's practices can be located in their own history of literacy. In order to


understand this, we need to take a life history approach, observing the history
within a person's life. There are several dimensions to this: people use literacy to
make changes in their lives; literacy changes people, and people find themselves
in the contemporary world of changing literacy practices. The literacy practices
an individual engages with change across their lifetime, as a result of changing
demands, available resources, and people's interests. (Barton & Hamilton, 1998,
p. 12)

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Drawing on these ideas for this chapter, I look at the ways literacy has changed

for the blind and the ways people's lives have changed over the last 80 years. After

providing some general background information in the first section, I provide four

profiles o f blind people ranging from age 77 to 17, including Adelle, George, Heather,

and Beth. The chapter looks at the influences o f technology on literacy for these

informants, as well as the political, social, and economic conditions in their lives.

Literacy and Technology

According to Murrey (2000), many people have compared the introduction of the

printing press in the 15th century to the introduction of the computer in the late 20th

century. However, Murrey argues that changes in technology did not change literacy but

that literacy in and of itself is a technology. Rather than technological advancements like

computers causing social change, Murrey argues that "changes result from mutually

influencing social and technological factors" (P. 43). In many ways, Murrey's argument

can be illustrated by looking at technology for the blind.

As described in Chapter 2, political and social climates can be linked to

advancements in technology for the blind. For example, new technologies developed

during times o f war. Braille itself was designed for the French army, not for blind

individuals (Bickle, 1988). World War I lead to the advancements in Braille printing

presses, as the blinded veterans pushed for Presidents Harding and Coolidge to allocate

more money for developments. World War II led to more blinded veterans whose letters

to the New York Women's Auxiliary led to the establishment of Recordings for the Blind

(RFB) because few veterans could read Braille and readers were not readily available

(http://www.rfb.org). Similarly charitable institutions and the introduction of residential

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schools and rehabilitation training centers during the first half of the 20th century altered

the literacy experiences for the blind and visually impaired.

Technology for the blind also has changed the ways literacy works in the lives of

sighted individuals. In 1808, Pellegrino Turri, an Italian man, designed the first stand­

alone typewriter so that his blind friend, Countess Carolina Fantoni, could write legibly

(http://www.staff.xu.edu/~polt/typewriters/). The National Bureau o f Standards

developed a low-cost talking book machine for the blind in 1948, which sparked the

advancements in tape players and recorders for the general public

(http://www.wcblind.org/history.html). In 1975, Ray Kurzweil created the reading

machine and optical character recognition so blind and visually impaired individuals

could scan and read books and other print documents, leading to the development of

computer scanners and FAX machines, which can be found in almost every office today

(http://www.kurzweiltech.com/techfirsts.html). The NCR Corporation designed talking

ATM machines for blind and visually impaired people, which also helped the millions of

people who could not read (http://www3.ncr.com/press_release/prl 11297b.html).

In spite of all the good that has resulted from these advancements, recent

technologies have caused concern among many blind and visually impaired individuals.

Barton and Hamilton (1998) write, "The interest in new technologies is fueled by a sense

of anxiety, as well as one o f possibility, but it is often simplistically defined in terms of

negative effects, the dangers to children and on education practice and on reading" (p.

21). According to most of my informants, literacy for the blind aligns more closely with

the traditional definition as the ability to read and write (Lankshear & Knobel, 2003), and

many o f them compare reading with the fingers or eyes to listening to tapes or electronic

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texts. More than two-thirds of the informants argued that a blind person needs to be able

to read and write using print or Braille and that literacy is not simply listening to texts.

For example, Jean, an 80-year-old woman who has been using Braille since age 4,

believes that all blind children need to learn Braille. She said:

Literacy is being able to read, and that doesn't mean being read to ... When literacy
rates are taken at different countries around the world, it's never taken on whether
you can be read something, it's whether you can read, even though I know that
there are people who must rely on being read to and may not be happy about that.
That's not the issue. I think it's the only reasonable one we can have if we define
reading the way other people do in other circumstances.

While most informants stressed that blind people should learn Braille in order to

spell and to understand grammar and punctuation, saying that computers with speech and

similar devices have hurt literacy for the blind and visually impaired, a couple o f non-

Braille and non-print readers felt differently. Jeffrey, a 39-year-old man who gradually

has been losing his sight from retinitis pigmentosa since he was a young child, a man

who cannot read print or Braille today, argues that literacy means being able to access the

printed word in any format, including listening to texts on computers with speech

programs. Similarly, Simran, a 26-year-old law student who also has been losing sight

from retinitis pigmentosa, asserts that literacy is more than reading and writing. While

she learned print as a child and Braille as an adult in a rehabilitation training center, she

cannot read either very well. She said, "I think literacy is like the ability to comprehend,

understand the world around you and then distill it, you know, analyze it, distill it, and

literacy is in part having an understanding of the language and in part the culture and

being able to read it, but I don't read it in a literal sense. Read is also read between the

lines."

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The above accounts demonstrate that many o f the blind are asking the wrong

questions about technology and literacy. They are looking at that narrowly-defined

definition of literacy as the ability to read and write. Instead the question that needs to be

asked is: Is technology changing life for blind and visually impaired individuals? If

literacy is examined from a sociocultural perspective (Barton & Hamilton, 1998; Heath,

1983; Scribner & Cole, 1981; Street, 1995), we must look at the environments in which

the learning occurred and at the changes that resulted from the introduction of such

technologies rather than at the skills themselves. Whether or not literacy means reading

and writing with Braille or print, listening to electronic texts, or a combination of both,

new technologies have changed and continue to change literacy for the blind, particularly

access to information.

As illustrated earlier, political and social environments lead to technological

advancements; however, in this chapter, I wish to focus on the ways political, social, and

economic environments shape literacy and the ways new technologies can lead to social,

political, economic, and personal transformations in the lives of blind individuals.

Developments like tape players, opticons, computers, scanners, cell phones, various

software programs, and even slates and styluses changed the conditions for literacy

learning, and the rest of this chapter explores the implications of these changes by

looking at four totally blind individuals, primarily focusing on the ways accessible

technology led to opportunities.

In the rest of this chapter, I provide profiles of the four informants ranging from

age 77 to 18 in order to illustrate the changes in literacy that occurred for blind

individuals over time, starting with Adelle, who attended a school for the blind in the

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1930s and 1940s, and ending with Beth, who currently attends a public high school in the

San Francisco Bay Area. In addition to Adelle and Beth, this chapter introduces George,

a 48-year-old African American man originally from Pennsylvania, and Heather, a 33-

year-old Caucasian woman originally from West Virginia. By looking at these life

histories, one can see the ways new innovations transformed the political, social,

economic, and/or personal positions of blind individuals.

I chose these four informants for this chapter not only because they provide a

timeline o f changes in technology for the blind, spanning 30, 15, and 15 years at a time,

but also because they have several things in common. First, they were all bom in other

parts o f the country or world and moved to or were brought to the Bay Area for better

lives. Second, except for Beth, who still lives with her parents, all are single and live

alone. Third, all have been totally blind since birth or a very young age and therefore

have never been able to read print, which makes them unique, as only two percent of

legally blind people have no residual vision. Fourth, all use Braille as their main medium

for reading and writing, and they are the minority in that respect, as only 8 to 9 percent

o f the blind and visually impaired read Braille today (Ferguson, 2001). Because later

chapters will focus on the factors that determined why some informants learned print or

Braille and why they choose to read or to listen to texts, I first wanted to examine the

ways technology changed or did not change the lives of people who could not read print.

Adelle: "Much More Competitive"

When I reach the BART station in San Francisco, the Powell Street station, I take

a cab to meet with Adelle, a 77-year-old Caucasian woman who has lived in San

Francisco since 1960. When I get out of the cab, I tap the iron fence with my cane and

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feel for the gate. Adelle meets me on the front sidewalk and I follow her into the

apartment building and up the spiral staircase to the third floor. This is a difficult climb

for me, but it must be more difficult for Adelle, who I later learn has severe rheumatoid

arthritis.

As we enter the small one-bedroom apartment, where Adelle has lived since 1976,

a place with rent control, I hear one of her two cats scurry across the living room floor

and into the bedroom, which is connected to the living room with French doors.

Although the apartment is sparsely furnished, with a couch, arm chair, and a dining table

with two chairs, I sense the small size. In the bedroom, where Adelle keeps her computer

and television, the other cat sleeps on the twin bed. Except for the occasional blast of

sirens coming through the open window, the place is quiet. This will be my first of 30

interviews with blind and visually impaired individuals in the San Francisco Bay Area,

and as I sit down and pull out my large tape player and laptop computer with speech, plug

them into the outlets, and sit down, I feel the excitement rushing through every part of my

body.

Adelle was bom in a small town in New York in 1927, the same year President

Coolidge passed legislation to increase the national budget for books in Braille. She was

bom without any sight from what she described as microthalmia, a term she learned from

her occupation as a medical secretary. She grew up during the Great Depression and her

"decidedly dysfunctional family" had little money, as her father, who worked as a

carpenter, was often unemployed. Although she had three siblings, two were much older

than Adelle and had moved out of the house by the time she was old enough to

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remember. The other sibling, a brother, was just four years older than Adelle, and though

they occasionally played together, she had very little in common with him.

Adelle recalled that there were a few books in the house and she remembered

being very curious to know what ideas they provided, but no one read them to her. While

her brother and father read the daily newspaper, they failed to share the contents with her.

Her mother, who had servant status in their household, read only religious pamphlets out

loud to Adelle and took her to the Pentecostal church, which was a long walk by foot for

a young child. When I asked about her parents' attitudes about blindness, Adelle

responded quietly:

I think when I was growing up, I thought of [blindness] as much more than it was.
It was a social handicap. My family were like many families in that they didn't
know what was possible to do as a blind person. My mother experienced a great
deal o f guilt, I think, because of my blindness. She may have been told that it had
to do with things that happened when I was developing in utero and she therefore
went through a great deal of unhappiness and this was tied to her general
unhappiness in her marriage, and I think from things that I remember my father
saying, that he probably blamed her, so she was living for the day when somehow
I would be healed, and she kept taking me to healers, faith healers. I don't know.
I think that faith healing can have some legitimate basis, but to put a child through
this? I mean it's just horrible. And so she would just not let go of this hope.
Somehow I would get sight and I would be quote unquote perfect. My father was
very overprotective and infantalized me, spoke to me in a certain way, even as an
adult sometimes, but often he did. If we were in a group and there was a general
conversation and opinions being expressed, if I ventured an opinion, he would
say, "What did you say?" like what does this little nothing have to say?

Because blind children attended residential schools for the blind during Adelle's

childhood, teachers more than parents influenced literacy. Adelle attended a residential

school from age 6 to 20. As the school was located about 200 miles from her house, she

went home only twice a year for Christmas and summers, taking the train with other blind

children and one sighted chaperone. She spent the other holidays at the school with staff

members and a few other children. Except for the religious pamphlets that her mother

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had read to her, this was her first exposure to reading and writing. Though Adelle lacks

specific memories o f being taught to read or write, she remembered the feeling she had

when learning. She said:

At first when they showed me the Braille slate, I thought "What am I supposed to
do with this." I thought and I was sort of slow to catch on. I thought, "What do
you do. Are you supposed to put a dot in each one o f those little cells?" No, they
showed me somehow there are six little places here and as soon as I caught on,
that was great and I enjoyed it, but, uh, I don't know. I remember just enjoying,
and when you got into the third grade, we were living in another building and
going to school in another building and there in our main building there was a
library and you could take books out.. .1 remember enjoying it. I remember that I
preferred reading during play periods I would stay in and read rather than go out
and play and that was partly because I was scared of other kids. Reading was a
sort o f safe place.

Because Adelle started attending the school for the blind in 1933, just one year

after "the war of the dots" was resolved and Braille became the official code for blind

children to read and write in the United States, she was exposed to New York point

slates, with eight dots instead of six, and to a Moontype Bible in the school library.

However, she was not taught to use these codes and learned the six-point Braille system,

first using a peg board and then moving to a slate and stylus. For math, she used the

Taylor arithmetic slate, also known as the type slate, which used holes and pegs to

indicate the number one was writing. White canes were not used before World War II,

and Adelle described the results. "Sometimes you'd bump into someone who had a full

jar of this type that you used in your type slate and they dropped all their type and then

you had to pick it up, or they had a load of books. People walked around with loads of

books (laughs) and they’d drop them."

In the fourth grade, the students at the school learned how to type, primarily so

they could send letters home to their families. Later that same year, Adelle was exposed

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to talking books on discs, but she preferred Braille, as she had to share the disc player

with her roommate, who was three years her senior and always chose the books they

would read. This girl "controlled [Adelle's] life from the fourth grade on, so [she] didn't

have the opportunity to make other friends."

In the summers, Adelle often became bored, as there was very little for her to do

at home. She learned to play the piano by ear at school, so she spent time playing, but

her parents' piano was old and out of tune. Sometimes she listened to soap operas and

comedy shows on the radio, but she always did this alone. Out of boredom, she spent a

lot of time going through junk in the attic. One o f her aunts gave her over-sized print

letters and taught her to play anagrams, which she liked. She preferred reading, but

Braille books were not easily available. Before high school, the library for the blind in

Albany sent her books, but she did not choose the titles. After high school, she had

sighted people help her fill out the forms with her book selections. Adelle described her

childhood reading as an escape. She said, "Books did mean a lot to me during summer

vacations. I did get a few books from the library, but I didn't get nearly enough for some

reason. I don't know why that was. I asked for more and I got magazine or two that

wasn't all that interesting, but I did rely on them for stimulation. I didn't have much else."

Adelle graduated from the residential school for the blind at age 20, a year after

the end of World War II when many women had started working in the public sphere. At

first, Adelle worked at a canning factory for a year and a half, where she had worked

during her last two summers of school, jobs arranged through the school for the blind.

During that time, she lived at home with her father, who dropped her off at the factory on

his way to work each morning. (By that time, her mother and brother had moved out of

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the house.) She spent another year and a half working as a transcriptionist in Syracuse.

Because white canes were not yet being used, while working in these jobs, Adelle relied

on coworkers to lead her around. If she needed to use the restroom, she had to ask

someone to take her there, a memory she recalled with sadness.

With encouragement from her older sister and "a social worker who liked the idea

of helping a young blind woman," Adelle went to Michigan State University, where she

said she lacked a sense o f belonging. During the first year, she relied on other students to

take her to her classes. Her sophomore year, she received a cane from rehabilitation

services and went to a training center, which she recounted in the following passage:

When I look back on that, I don't know how I did that, how I did my first year
without a cane. And then the state rehab sent me to this center in Buffalo, which
was supposed to be for cane travel training, which I probably got for about three
sessions in the course. How long was I there? Gosh, I think I was there two or
three weeks, which was a waste of time. Mainly I was packing boxes of various
items, so I was evaluated on how well I could pack boxes.

At that time, most blind adults worked in sheltered workshops for the blind,

where jobs like packing boxes, weaving baskets, and making brooms were performed,

which is just one reason why Adelle decided to go to college. She wanted more out of

life. However, she faced challenges in doing the work for her classes. Adelle used a

slate and stylus to take notes in class, but sometimes she had difficulties finding

classmates to read the textbooks to her. Because tape recorders were not yet available,

she had to listen and take notes as other students read to her. For tests, people read the

questions and she had to verbally give the answers. In 1955, she received a bachelor's

degree in music therapy, which was then "a budding new field," but not the right place

for Adelle. The first positive blind person she had met as a child was her sixth-grade

voice and harmony teacher, and Adelle said, I was kind of seduced by someone who

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thought music therapy was a great thing for me to do and didn’t really know what my

limitations were."

After finishing the program, Adelle spent about a year without employment, two

years in a job as a music therapist in a small town in Indiana where she spent much o f her

time in hospitals encouraging patients to sing, and another year without employment. In

1960, she started working as a medical transcriptionist in New York, where she was

trained on the job. She was employed off and on in either Manhattan or Brooklyn until

she moved to San Francisco in 1973, because she wanted to attend the Zen Center on

Page Street. She used her own savings to live at the center for a month, where silent

meditation was the primary focus.

Like in New York, Adelle worked in jobs as a medical transcriptionist in San

Francisco, the longest for 10 years until she was laid off for downsizing, the second

longest for 4 years until she was laid off for the same reason. Early on in her career,

Adelle used manual typewriters and cylinder discs to do her job. If she forgot where she

was on the page or if she made a mistake, she had to call another transcriptionist or her

supervisor over to her desk and have that person remind her where she was or fix the

mistake for her. Also, the poor sound quality on the cylinders required that Adelle listen

over and over, which not only took time, but also wore down the cylinder until it no

longer played.

As Braille medical dictionaries were not always available in her jobs, Adelle kept

a card file o f medical terms in Braille. Each time she came across a new word, she would

get out her slate and stylus, Braille the word and the meaning, if she knew it, and put it in

her card file, so she would know the word and the spelling the next time she came across

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it. Also, for looking up words in print dictionaries, she used the opticon, a device using a

camera and 144 pins that form a tactile representation o f the letters that the blind person

can feel with the index finger. However, Adelle explained that she wasn't competitive in

her field until the introduction o f computers with Vocal-eyes and electronic dictionaries,

which she said saved a lot of time and frustration:

I was evaluated annually on general things—accuracy and punctuality and all that
stuff, initiative and all the whole gamut—in both hospital jobs, and I was able to
hold my own, sort of just. I mean I wasn't that fast, because when I took the
second hospital job, I was 61 and there was no way I could equal a much younger
person, but I did basically just about what they wanted. In my last job, I was a lot
more competitive with the computer.

Today, Adelle has a computer and scanner at home, but she uses a volunteer from

the San Francisco Lighthouse for the Blind to read her mail and to do her bills once a

week since retiring. However, she still shops for groceries on her own. After walking

the four blocks to the grocery store and having an employee help find the things she

needs on her Braille list, she pulls the cart home and carries her bags of groceries up the

spiral staircase to her third floor apartment. When I asked if she has ever considered

ordering her groceries online, she said she is more interested in saving money now that

she is retired and living on Social Security. The cost for home delivery is $7.95 for a

four-hour delivery window and $9.95 for a two-hour delivery window.

Adelle continues to read for enjoyment and information, mostly before she goes

to bed at night. During the day, she listens to talk shows on the radio. She often

responds to things she has read or heard on the radio by writing letters, mostly of a

political nature. Before computers, she participated in this type of activity, but not very

often, as it took more time if she made mistakes in typing. She said she is more inclined

to do it now because she likes being able to draft a letter, put it aside for a while, and

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come back to it later. She writes a lot of letters on peace and social justice, on human and

animal rights. She explained:

Once in a while, I write letters for a group called Death Penalty Focus. I have.. .1
receive email messages from them to send emails of various subjects and I'm
about to write a letter to Governor Schwarzenegger to ask him to declare a
moratorium in California on the death penalty. (Adelle pauses, waiting for the
sirens to die down as several emergency vehicles pass by outside.) The whole
process of convicting and executing murderers can be assessed so that it can be,
so there can be some effort to consider how to make it more fair. If you're going
to do it or if it can't be done, which I believe it can't be done in an even handed
way for various ethnic groups, then we shouldn't be putting people to death. I've
written a lot o f letters on that subject. I think (long pause) What little reading I've
been able to find on spiritual teachings has been maybe, I would say, the central
influence in my life.

As illustrated in this account of Adelle, the lack o f reading and writing materials

during her childhood clashed with the push for mass literacy at the time (Resnick &

Resnick, 1977). Because Braille books were very expensive, Adelle's family could not

afford to buy her books. Plus, with the economic situation during the Great Depression

and the negative attitudes o f her parents, more than likely they would not have

encouraged her to read. Throughout her education, she used a slate and stylus to take

notes, but she relied on people to read her texts and tests aloud to her. In her job as a

medical transcriptionist, a career that was introduced with record-keeping after World

War II, Adelle depended on coworkers to not only take her to the bathroom but also to

help correct her mistakes and find her place in the medical reports. It wasn't until the

introduction of computers with screen-reading programs that Adelle felt competitive in

her job, but by that time, she was ready to retire.

While Adelle has a computer with a screen-reading program and scanner in her

home today, her past literacy practices linger. Rather than scanning her mail, she uses

human readers from the Rose Resnick Lighthouse for the Blind. Rather than ordering

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groceries online, she relies on employees at her local grocery store to help her find the

items she wants. She uses her computer to check her email and to do searches on

political issues that matter to her. She writes letters, hoping that she can make a

difference in the lives of people who are being oppressed, as she feels she was in the past.

Adelle reads to make sense of her own life, and she writes to communicate the injustices

in the world to others. Unlike her childhood when she felt as though her family treated

her poorly and at the school where her roommate dictated her every move, today Adelle

has a voice. Still, she believes that her life as a blind person would have been much

better if computers had been introduced earlier, and the next profile illustrates this idea

by looking at the ways technology improved life for George, who was bom almost 30

years later.

George: ’’Broadened Our World"

On a beautiful Saturday morning in September, I meet George, a 48-year-old

African-American man with congenital glaucoma, just outside of the San Francisco

Public Library, across the street from the Civic Center BART station. When I hear the

sound o f his cane, I call out his name and greet him. We head down the street to The

Gyro King, a Greek restaurant, find the open entrance by following the sound of the

music, and stand in line at the counter. After placing our orders and paying the clerk, we

wait as two Greek employees prepare the food. The place is very crowded and noisy, so

we sit in a comer and try to drown out the background noise with our conversation.

George was bom with congenital glaucoma in 1957 and had "a million eye

operations" before going totally blind at age nine. He lived in what he referred to as "the

projects" in Harrisburg, Pennsylvania, the 8th o f 11 children. According to George, his

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father worked doing carpentry off and on, and his family was poor. He said, "My family

was on welfare the whole time I grew up. We ate two weeks, starved two weeks. That

was our environment. We didn't have many clothes. We were very very poor."

George was not read to at home, nor was he sent to school. Until age eight, he sat

at home, listening to the television. His parents thought that one of his sisters or brothers

would take care of him for the rest of his life. After a social worker visited his home, a

visit George knew very little about, he was sent to a school for the blind in Philadelphia,

where he was one of approximately 300 students. By this time, the schools for the blind

in the North had been folly integrated for about a decade, and the issues with race in the

school were minimal, according to George.

Like Adelle, George lacked memories of learning to read and write Braille, but he

thought reading was a good escape for him and for other blind children who were unable

to do a lot of the hobbies and sports that interested sighted children at the time. He

checked out books in Braille and on disc, including Ivanhoe, the first foll-length novel he

read in Braille. He said, "I remember reading Ivanho and I remember loving reading it

because, you know, we had lights out and you know we could still be reading."

Because books on tape were readily available by the time George went to school,

he spent a lot of his spare time listening to books on tape, as well as reading Braille books

and magazines. During the summers and while on breaks at home, times when George

felt as though "it was like going home to strangers," a woman from an association for the

blind would help George fill out the forms for the books he wanted to read. As a client of

National Library Services for the Blind and Visually Impaired (NLS), he could select the

books he wanted to read. Sometimes, though, they would send books that he had not

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ordered, but he would read them anyway. For example, when he was 11, he read a

Braille book on sex and reproduction and admitted that he "was fascinated and finished

the book."

At the school, George learned Braille music and played the clarinet. In high

school, he became involved in sports, including wrestling and track, competing against

students from schools for the blind or schools for other disabilities on the East Coast. For

George, these extra-curricular activities were very important. In spite of this

socialization, he argued that the school for the blind isolated him and said that he wasn't

ready for college, which he described in the following passage:

I think it was a little bit more of an adjustment getting out into the outside world
because we had it so set. College was hell because all o f a sudden you had to
learn to deal with all that inaccessibility. It was hell because at a school for the
blind we all knew each other and we were all friends and I think it really made it
clear about our differences and about how sighted people see blind people and it
was hard to make friends and that was difficult. I think that it's just hard for
anybody the first year out of high school, but I think that being blind and after
coming out of an institution, which is what we were, a very safe institution, was
difficult.

George struggled through college, primarily because of the lack of access to print

documents. He took notes with a slate and stylus and hired readers to read his textbooks

and other written materials in person and onto tapes. However, with no previous

experience in hiring and/or firing readers, he felt that the management of his schooling

was out of his control. Sometimes his readers would quit. Sometimes his readers would

fail to return the books and tapes and he wouldn't see them again. He explained:

It was like running a damn corporation. I hated school. It was just too damn
hard. It really was. I feel for a lot of the folks that do it now, even though I see it
as a little bit easier for people, but really it was hellacious. I hated it. I absolutely
hated school. It was just really way too much to manage, but it was safe because
you know I certainly wasn’t getting any job offers, just like all the blind people.
People ask what you do and you say I'm in school and everybody forgives you, so

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in that sense it gave me something to do. Basically I just had to keep my grades
at least at a fair level, but it was terrible. I hated school. I hated all the
coordination. You know in those days, too, you could type a paper, like I
remember typing a paper and I had it on stencil on the typewriter and nothing
came out. It was horrible.

After graduating from college with an associate's degree in criminology and a

bachelor's degree in social work, George found jobs off and on in Philadelphia for a few

years, including as a disability awareness trainer in hospitals and nursing homes and as a

telemarketer for Time Life, for which he would call people during dinner and ask if they

wanted to buy books on plumbing or mechanics. Then in 1981, George sold everything

he owned and moved to the Bay Area for the weather and employment, which he

described as a good change:

I think it made me grow up being totally away from, being in a completely new
environment where I had to make it. I think that coming to California was the
best thing that I ever did for myself. I can't think of anything else better that I've
done in terms of making me grow as a person. I think that coming to California
was the best thing that I ever could have done.

After moving to the Bay Area, George worked as a benefits counselor for a

number o f years, helping people with SSI and SSDI and attending administrative

hearings. Then he moved to his current job as a rehabilitation supervisor, where he

spends a lot o f his time reading regulations and manuals, as well as case notes and

vocational plans of the rehabilitation clients. The rehabilitation counselors write the

plans and he reads and approves them. He said the job is much better today with

technology:

It's better 'cause the whole office, the whole rehab, is becoming more electronic. I
mean it's a lot better than it was when I first started 20 years ago when we did
typing and we had to do it when everything was in handwriting, so for me
personally, for other people they may see it differently, but for me personally, I
think it's pretty heavenly compared to the way it used to be.. .1 feel like that the
job now is more under my control. I feel like I'm more in control, because, you

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know, we have everything pretty much electronic, except for the medical
documents, but for the most part, I would say that a good, and I'll even say
conservatively, 80 to 85 percent of the job is electronic.

Although George felt that technology helped with the reading and writing parts of

his job, he admitted that many blind people are kept out of employment because o f the

advanced technology. Screen-readers will not work with JAVA script or with many

graphic images and George spends a lot o f time working with potential employers for

blind and visually impaired individuals, trying to find solutions to these problems so that

more jobs will be available for the blind and visually impaired. However, George feels

that a more significant problem exists that is contributing to the high unemployment rate.

In the following quote, George described some o f the problems:

People are scared. People are scared o f disability in general. People are scared of
dealing with people that they're not familiar with. I mean if it's race or disability
or whatever, so I go. I have several projects that I'm working on with different
employers, so that's what I do. I mean, I try to do things that counselors don't
have time to do. I mean counselors don't have the time to go out and deal with
employers, so that's what I do, you know, so if there's you know, a talk that needs
to take place with an employer, I'll go out and do a talk and I'll try to initiate a
contact and pass the contact on to the staff so they can get people in once they
smooth the way.

Even though he admits there are some problems with the advanced technology,

George feels as though he has gained control over his life in the last 10 years, primarily

because o f the technology. He reads his mail with a scanner and optical character

recognition program. He pays all of his bills with a bank-by-phone service or on the

Internet, and he appreciates that he can keep his personal business private. George also

likes that he can read the newspapers on the phone with Newsline or on the Internet with

various lists. He said, "So much is more available to us online now, so I just think

computers are really great, you know, for us cause it really has broadened our world."

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While George is fond o f the technology, he continues to use his slate and stylus

for jotting down notes or names and addresses, as he believes that method is much easier

than carrying around an electronic device. He is "not sold on note-taking devices."

However, he said his favorite device is his talking telephone, the Nokia 6620. He uses it

for all his contacts and for his calendar.

In looking over his literacy experiences as a blind person, George feels fortunate.

He believes that his life has been easy compared to those of his family members and

many other blind and visually impaired individuals. When I asked why, he explained:

I think being blind for me was the best thing that ever happened because it got me
out of poverty. It got me introduced to people that I probably never would have
touched elbows with in my life. It got me the opportunity to go to college, you
know, by accessing rehab, so I would say that I am more fortunate than a lot of
people that I grew up with because I am blind.

As illustrated several times in this profile, George appreciated the advancements

in technology, which, in his mind, made his life a lot easier. Like Adelle, George

depended on human readers to get through college, something he hated doing. With the

introduction o f computers with speech a decade or so after he graduated from college, he

gained control over his life, including his job, by being able to access most print

documents. George not only gained independence at work, but he also felt as though he

gained independence in his personal life. With the introduction of the computer with

speech, he could pay bills online, take care of his personal correspondence, and read

newspapers over the phone. However, like Adelle, he holds on to some of his past

literacy practices. While out and about, he refuses to depend on notetaking devices that

could fail. Instead he carries a slate and stylus.

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In comparing his life to the lives o f his sighted siblings, George felt fortunate to

have been bom blind. He felt that blindness got him out of poverty by providing an

education. In the next section, the opposite occurred. While the profile of Heather shows

the ways economic status can influence literacy in a blind child's life, it also illustrates

the difficulties of not being like the other members of the family.

Heather: "Heavenly...Awesome"

I walk to Heather's apartment, as she lives only four blocks from my home in El

Cerrito. She has provided clear tactile instructions on how to get to her building. Passing

through the shopping center at the comer of San Pablo and Fairmont, I find the right

patch o f truncated domes, or "blindy finders" as Heather calls them. I call Heather on my

cell phone to let her know that I am only about 20 yards away, and I cross through the

parking lot, Hearing Heather shouting my name. I follow her up the stairs to the second

floor.

Upon entering the modem one-bedroom apartment, Heather's two cats, Supergirl

and Tabby, ran from the living room and into the bedroom. Heather explains the layout

of the apartment-kitchen on the right, bedroom and bathroom down the hall to the left,

and living and dining room straight ahead. Heather tells me to take a seat, so I head

across the room and sit on the couch, directly beneath the tactile map of the United

States.

Heather, a 33-year-old Caucasian woman, was bom in West Virginia in 1973.

After several misdiagnoses, the doctors diagnosed her with retinal blastoma and removed

both of her eyes when she was two years old to prevent the cancer from spreading. When

she was three, her father took a job as a junior high science and math teacher on a

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military base in Saudi Arabia, where she lived until she was 10 years old. Her family had

a house boy and people who cooked for them, which, according to Heather, was

"common in Saudi." The women did not work, so her mother spent time playing tennis

or playing with Heather and her two sisters. Her father and mother read all the time and

her mother often fell asleep while telling stories of Raggedy Ann and Andy, Uncle Willy,

the clan o f the cave Bear, and Bambi. Her father, on the other hand, tried to interest his

daughters in Money Magazine.

Heather's parents wanted her to read and write along with her sighted siblings.

They were concerned that Heather might not keep up in school, so they hired tutors to

come in to teach her Braille before she went to kindergarten. The tutors provided

flashcards with the letters in both Braille and tactile print, as well as a magnetic board

with magnetic letters. Heather described what reading meant to her family:

Reading was huge. You know I was encouraged to read anything and everything.
I mean they got all o f these books from Library of Congress, Braille books that
Library of Congress was going to throw away, and so the American consulate
delivered them to our house, and they covered the walls o f like one of our
bedrooms, and it didn't matter what it was, I was allowed to read it, so yeah.
Reading was huge to my family. WE were always reading. My mom and her
friends were always talking about the books they read. They weren't like high end
historical novels or anything, but a lot of times we read like all the cheesy trashy
James Michener novels, but on the other hand we were always reading and my
parents were pretty clear that meant reading, not listening to a tape, usually.

Although Heather's parents encouraged her to read Braille, they did not learn to

read Braille themselves, so they couldn't read any of Heather's writing. According to

Heather, her parents distanced themselves from the blindness by doing this, as they

wanted her to be as normal as possible. Her mother taught her to type at a very young

age and also tried to teach her to print. Heather recalled the experience of learning to

print.

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I remember handwriting. When I was learning to handwrite, that was more of a


struggle because my parents really wanted me to write like I could see, and I
would try to follow things along with my left hand to feel it and they were like,
"No you can't feel it." You know, they'd want me to not put my left hand on the
paper and that was a struggle. I could never write good enough. You know, it
never looked good enough for them.

While Heather could read and write with Braille, she could never illustrate her

skills in class contests. For example, in third grade, the teacher would have times table

tests, but Heather's reader could not read the problems, get the answers from her, and

record the answers as fast as the sighted children could look at the problems and write

down their answers. Similarly, Heather was not successful in spelling bee contests. In

this way, Heather felt she was excluded from literacy experiences.

In seventh grade, while her sisters were attending private boarding schools on the

East and West coasts in the United States, Heather started attending a residential school

for the blind in the Midwest. For the flights back and forth between Saudi Arabia and the

United States, Heather carried Braille books in her carry-on suitcases so she would have

something to occupy her time, while her sisters could go into the shop in the airport and

buy romance novels off the shelves. Being with all blind children at the residential

school, Heather felt more included. Still, she associated sight with being normal and

often tried to pretend she had some sight. Her goal at the school was to be grouped with

the partially sighted kids. She equated sight with being more functional, more able to fit

in society, and more independent. She liked the residential school because, for the first

time in her education, she was able to participate in extra-curricular activities. However,

she knew that she wasn't challenged by the academics, and when she transferred to a

private boarding school in California for her senior year of high school, she was behind

the other children. She explained:

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The residential school was a very safe and warm environment and maybe it was a
little unrealistic because.. .well, no, it was just a very safe, it was just a small,
insular little world, and the academics were really poor, and so when I did have to
go back to public school, you know, there were classes we didn't have the books
in, and I was in the school with.. .a lot of kids from my grade like had
developmental disabilities, so I think that when I went back to regular school,
whereas before I had gone into the school for the blind I had been ahead a grade
or two because the schools in Saudi were more advanced, so when I came back to
the states I was ahead a little, but by the time I left the school for the blind and
tried to go to public school, I was a little, I was in the lower, you know, I wasn't in
the AP classes. I was in the lesser classes.

According to Heather, Braille helped with her writing. She learned correct

spelling, punctuation, and sentence and paragraph constructions because she was able to

"see" those things with her fingers. On the other hand, she found it difficult to pay

attention while listening to audible books, which has become the primary medium for

reading for blind and visually impaired individuals in the last few decades. She described

the problem she had in listening rather than reading.

I know {reading Braille} is something that people I've known really well have had
difficulties with, but on the other hand, they had the ability to listen to information
and take it in, where I felt like I couldn't. When I was forced to when I did not
have the option to have things in Braille, I felt at a disadvantage because I wasn't
as able to cope with gathering the information auditorily. I wasn't able to do that
as well, so that was a disadvantage. I wish I had been forced almost to develop, if
you can force someone to develop the skills, and like in high school, also when
they switch you from high school, there's a place at least in my experiences,
where all of a sudden, you stop getting everything in Braille and they're like, "By
the way. Now everything's on tape," and there was a completely related drop in
my grades when that happened to me, because all of a sudden I couldn't read
anymore. I had to listen to everything and I had never had to listen to everything.
Listening was something I had never done, because my parents had always
discouraged it.

Heather moved to California to attend Sonoma State University in 1990 and to

San Francisco to attend law school at Hastings in 1997. She liked the transportation and

the people. She said that computers made college easier, especially writing. She liked

being able to save and retrieve, as well as spellcheck, documents. As it was for Adelle

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and George, writing papers using typewriters was difficult. Heather said, "Once you've

started typing a paper, if you were reading it in Braille and typing it on a typewriter, you

really hated to walk away because you know what I mean? Cause you're like, 'Oh shit!

Which word was I on? Did I already press enter? Am I on a new paragraph?' I mean

you know it was just, so the computer made that part easier."

During college, Heather worked as an English and math tutor. After law school,

she started doing volunteer work for a couple of different agencies, hoping to get a job as

an attorney. However, after several applications and rejections, she gave up. She said

that it's hard to find a job as an attorney when your own family members don't believe in

you.

Both of my sisters are pretty successful and I think it's very, you know, they're not
sure, like it's kind of weird because my parents always told me you know that
you can do whatever you want and I totally believe it. On the other hand, I'm not
sure that my sisters, and particularly my older sister, believes it. She said, "Well,
no one's ever going to hire you as an attorney anyway and I wouldn't and I don't
think that blind people can be an attorney cause I don't know how you would do
this that or the other," so it makes it so that I don't even want to .. .1 just don't want
to argue with them. What's the point, but so that part is a little difficult. That's
made it strained.. .People are so quick to judge and it's still like, you know it's not
about you and me. There's nothing wrong with us. It's about all the people who
don't give us a chance or don't believe in us.

Today Heather teaches blind and visually impaired people how to use computer

software, including Jaws, Zoomtext, Access, Excel, PowerPoint, Outlook, Outlook

Express, and Microsoft Word. In her home, Heather has a computer, a Braille Light, a

scanner, an opticon, and a slate and stylus. She believes that learning how to use a

variety of tools has led to her independence. With Braille, she has the ability to record

phone numbers and take notes. With the typewriter or by hand, she can address

envelops. With the scanner, she can read her own mail. But she claims the computer has

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been the most beneficial. She said, "That I can put books on my Braille Light is

heavenly. That I can download books and recipes from the web onto my Braille Light,

that's awesome. That I can download recipes on the regular computer. I can put an audio

file on my computer and listen to CDs on my computer."

This account of Heather shows some of the differences between residential

schools for the blind and public schools, as Heather attended both. Like George, Heather

felt as though the school for the blind isolated her from the rest of the world, as well as

lowered the expectations for totally blind children. Also, Heather's story demonstrates

the impact that computers had on the everyday lives of the blind and visually impaired.

Heather used the computer in every area of her life —at home, in school, at work, and in

the community. Because computers with speech were available by the time Heather went

to college, she faced fewer problems than George. She depended on readers less and

typed papers independently without worrying if she forgot her place. Heather's job

would not have existed without computers.

Perhaps even more than what technology did in Heather's life, this section shows

the ways supportive parents, especially those with money, can help with literacy for a

blind child. Heather's father was in a position that enabled him to access Braille books

for his daughter. Heather’s mother did not have to work and was able to spend a lot of

time reading to Heather and her sisters. However, Heather often felt as though her

parents and sisters treated her differently because of her blindness. While the next

chapter will provide a more focused discussion on the topic of parents' roles in the

literacy education of their blind children, the next section jumps forward another 15 years

to the story of Beth, a high school student in the San Francisco Bay Area.

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Beth: "Chatting And Surfing"

I take BART and the Muni train to Beth's place in San Francisco. The train stops

just two blocks from the house where she lives with her father, step mother, and 10 other

aunts, uncles and cousins, and as I head down the busy sidewalk, I hear at least three

other languages being spoken. Beth waits for me in front of the house, and after climbing

the concrete stairs, we enter the living room, which seems very quiet compared to the

outside with all the windows closed. Beth informs me that she is the only one at home

and that the house is crazy in the evenings. I follow her to the third floor, where half o f

the attic serves as her bedroom. The radio is on, but I do not recognize the music. I sit

on the edge of her twin-size bed and turn on my tape player.

Beth was bom in the Philippines in 1987. Because she was two months

premature, her eyes didn't develop normally. The hospital lacked the facilities to help, so

she lost all of her sight. When she was only three years old, her mother died of a heart

attack after a volcano eruption destroyed their house and her father later remarried.

During the first nine years o f her life, Beth stayed at home and did not leam to read or

write. The public school in the Philippines did not have the materials to educate a blind

child, and the school for the blind was too far from her home and too expensive for her

father. However, her older sister, 12 years her senior, read to her. Her sister also

exposed her to coloring books and raised letters, although Beth was never able to write

using print. Beth also watched television shows in her native language of tagalog, the

language of the Philippines. Through these shows, she learned her letters and numbers.

Beth remembered the parties that her family had when she was still living in the

Philippines, like "big street parties with all the people in the neighborhood." Neighbors

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and members o f her large extended family came and sat in chairs inside and outside of

her small house, listening to her older brother's band sing Brian Adams' love songs in

English. Beth remembered that music was a big part of her life in the Philippines. "I

sang along to English songs, but I never really understood what I was singing," she said,

laughing. "I knew how to sing, I knew how to pronounce the words, but I didn't know

what they meant."

When she was nine years old, Beth's father brought her to the United States with

the hope of having a specialist restore her sight, but the doctors told him that it was too

late. By that time, her step mother was already living in San Francisco, working in

customer service for an airline, and her father found a job working for the city. Because

Beth would be starting in the public school the following fall, she began learning English

by watching television, playing with her English-speaking cousins, and going shopping

with her step-mother. When she started in the fourth grade, she was working at a first-

grade level. Beth recalled the challenges she faced in learning to read and write Braille.

I remember writing rows of As and Bs and Cs until I memorized them. I was


basically, I had a one on one teacher for two years, and then when I entered
middle school, they put me in the mainstream class to see if I could handle it, and
so basically all throughout middle school, my vision teacher was just throwing
books at me so I could read and build up my reading speed and vocabulary. For
the most part, there was a lot of pushing and I got very intimidated. I was
learning English, Braille and everything, but once they started giving me books
that I actually liked to read, I really read and read and sometimes, there was
actually one period where I read every book they gave to me, so I used to stay up
till three o'clock in the morning just reading. The first series that really influenced
me to read was the Goose Bump series. I recall reading those.

Because of the time period when Beth attended school, she was exposed to lots of

tactile materials for learning. The school provided tactile graphs, maps, and a globe,

which computer technology made possible. However, Beth preferred descriptions,

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saying, "Even though tactile maps were available, I got next to nothing out of them."

Like descriptions o f the maps, Beth appreciated descriptions of the videos that teachers in

her school frequently showed.

Today, Beth attends a public high school on the other side of San Francisco, the

only school that has a program for blind and visually impaired students. She spends an

hour each day in the Resource Room, which has a computer with Jaws, a scanner with

Open Book, and a Braillewriter. She goes for help with math. She said, "During the past

three years, I've been taking a math class, math classes, and that's basically my weakest

subject, um, so I get math tutoring/Nemeth Braille because I found it confusing."

Beth said that she has been lucky to have understanding mainstream classroom

teachers, except for one. She explained:

He forgot that I was in his classroom and I needed help because he would write
stuff on the board and I needed him to read it, to read what he wrote, and so he
basically ended up calling my vision teacher and said, "I have a blind student in
the room and I don't know what to do with her." (laughs) I was just basically sent
out o f the room whenever there was an assignment and I'd just get it with my
vision teacher.

Beth has grown up with technology as part of her literacy education. In fact, she

does not know how to use a slate and stylus, as she always has used Braillewriters or

note-taking devices. She feels lucky to have the technology. She downloads textbooks

from webbraille, but once in a while the books she wants to read are not available. Plus,

she admits that she is not as excited about reading as she was in middle school. She

described her feelings.

I'm basically tired o f it. I have to push myself to do it. I'm supposed to be reading
this book for school before next week and I cannot do it. I'm still in the summer
mode and it's a book that I don't like reading. It's called Emma by Jane Austin.
It's the time period around the 1800s based in Europe about this girl who's very
rich or somewhat. That's all I know cause I'm only on the first chapter, (laughs)

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Luckily they're only making us read one book, but the choices they've made, we
only got to choose from three books and unfortunately the book that was available
through the webbraille format is Emma and they just basically didn't have the
time to Braille the other books.

In a later interview, I discovered that Beth's teacher asked the students to write a

one-paragraph summary o f the book. According to Beth, she and several of her

classmates did not like or finish the book. In her summary, she wrote down the reasons

why she did not like the book, including that she "couldn't relate to it." Beth wishes that

the school would assign books that she is interested in reading. For example, she loves

the Harry Potter series and finished the sixth book in one week, as it was available the

day after its release on both Webbraille and Bookshare, two sites where blind people can

go to download electronic books. (Beth and I discuss the hook and agree that

Dumbledore is not really dead.) The volunteers at Bookshare, and other such

organizations, try to make the popular books available to the blind as early as possible.

They buy, scan, and upload the books as soon as they are for sale, which has been a

wonderful service. Previously, the books would be read onto tape two years or more

after the release date.

While Beth loves to read books that interest her, writing has been more of a

challenge, especially in school. However, she wrote one paper on cloning this year and

received a 9 out of 10, which made her very happy, as she said she usually receives poor

grades on papers. According to Beth, she can sit down and write papers that seem to

flow to her, but she doesn't know ways she can improve. "As far as writing, its still hard

for me to write, cause honestly I haven't gotten a lot of experience in writing," she

explained. "Getting feedback from my teachers is not easy because they would just make

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check marks on my paper and I would have to take extra time to learn what comments

they made. My classmates can correct what mistakes they make."

In her attic room at home, Beth has a computer with Jaws, a Braille Note with a

refreshable Braille display, and a Braille writer, which the school district supplied. She

said, "I use the Braille writer if I have to do something that involves math cause I need to

see it. I use the computer mainly for chatting online or surfing the web, but most of the

school stuff I find that I use the Braille Note." Beth said that she has all the equipment

she needs, but she wishes her parents would be more involved in her education. "They're

too busy to learn Braille and they try to help me out with whatever the questions or math

problems that I need help with or whatever, but nowadays it's difficult just because they

work at night and my assignments are a little more intense than what they know."

Though Beth has been involved in a few programs for blind teens, including

attending Enchanted Hills camp, a summer camp for blind kids, she classifies herself as a

loner. She has a few friends, but it has been hard for her to get to know her classmates,

partly because her parents are very protective. She is not allowed to participate in extra­

curricular activities and is expected to return to her house immediately after school. She

explained:

I have this cell phone. I have to carry it around with me and they will call around
3:15 in the afternoon just to make sure I'm on the bus and I have to call them once
I'm at home. What my dad does is he will hang up the phone after he calls me on
my cell phone and he would dial my home phone number to make sure I pick up.
(laughs) I can't trick them. (Laughs).

After graduation, Beth would like to attend a community college and then a four-

year university to become a teacher o f the blind and visually impaired or an

environmental planner, but first she plans to attend a training center in the Bay Area to

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improve her blindness skills, especially orientation and mobility. She desires to acquire

the confidence she has seen in other blind people she has met, including counselors at

camp. "It was just amazing to be around blind people not my age, people who were

older, who were actually doing something out there," she said, "There are a lot of kids my

age who still try to deny that they're blind. That's why they get themselves into bigger

holes, deeper holes pretending to be sighted. Gosh, never be ashamed o f what you are, of

who you are."

This account of Beth illustrates the changes that have occurred since Ayella

attended school decades ago. While Beth did not start school until she moved to the

United States at age nine, she learned to read and write Braille with a Braille Note and a

refreshable Braille display and caught up with her peers very quickly. Throughout her

education, she has used a perkin's Brailler and many electronic devices. She downloads

most of her textbooks from WebBraille or Bookshare. She has a computer with speech in

her attic room at home, and each day she spends hours chatting with friends on chat

rooms or exchanging emails, since she isn't allowed to participate in extracurricular

activities. She is looking forward to graduating from high school, attending a training

center, and going to college.

Summary

While the debates over the definitions of literacy continue among the blind, these

profiles illustrate that the new technologies, such as Braille note-takers and refreshable

Braille displays, are not replacing the old technologies, such as the slate and stylus and

Braille books. They exist simultaneously. Still, In looking into these lives, it is clear to

see some o f the ways technology has changed literacy for blind and visually impaired

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people over the last 80 years. The shift from using only Braille to using computers and

portable devices with speech to access information changed the way blind people read

and write.

In the 1930s and 1940s when Adelle attended a residential school, education for

the blind was just beginning to transform from learning trades to learning the skills of

literacy. At that time, computer technology did not exist. Instead, Adelle read books in

Braille and wrote using a slate and stylus. By the 1960s and 1970s when George

attended a residential school, books and magazines were available both in Braille and on

tape. In college, he relied on readers, but they often failed to complete their tasks. In the

1980s and early 1990s, Heather used Braille and cassettes for reading in school, and she

had a hard time listening to texts. On the other hand, she said the computer technology,

including screen reading programs, helped with her college writing. Beth never has held

a slate and stylus and has used only electronic devices for her literacy education.

Since the 1930s when Adelle attended school, layers and layers have been added

to literacy for blind and visually impaired individuals. While Adelle needed to know

only how to use a typewriter and a slate and stylus for her future, Beth must know how to

use her Perkin's Brailler, her computer with screen reading and scanning programs, and

her Braille Note with the refreshable Braille display, as well as how to download books

from bookshare, webraille, and other websites. Even though Beth must know more than

Adelle had to know at the same age, she has access to more materials. While Adelle had

to share the limited number of Braille books in her school with the other classmates and

the books on disc with her roommate, Beth can go on the computer and download most

of the books she needs for school. While Adelle remembers summers spent with only a

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few Braille books being sent to her, books she didn't always choose, Beth can get on her

computer and download the most recent titles, including books such as Harry Potter and

the Half-Blood Prince, and read them on her Braille Note with a refreshable Braille

display.

Besides the changes that technology created in literacy skills at school, these

accounts illustrate a shift in work literacies. Adelle began working after World War II

when opportunities opened up for both women and blind individuals. At the time,

learning to type on a manual typewriter and to read and write with Braille was enough for

her future career as a medical transcriptionist, one o f the few jobs available for the blind

at the time, besides working in sheltered workshops. On the other hand, George and

Heather used technology every day in their jobs. Though Beth has never lived without

technology and has not yet held a job, the others commented on the ways technology has

made their jobs easier. Adelle talked of the frustration of losing her place while

transcribing and emphasized her appreciation for computers. She explained the ways

technology made her more competitive in the workplace. George described the changes

from going to school and having to depend on unreliable readers to going to work and

using computers on his own. Without computer technology, Heather would not have her

current job.

All four informants described technology as liberating in their everyday lives.

George and Heather appreciate that they can pay their bills online and keep their personal

finances private. Using technology is an important part of their lives, from George's

access to magazines and newspapers through Newsline on his accessible talking phone to

Adelle's letter writing on political topics. Using the computer for writing has been a

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major component in all o f their lives. Even though Beth claims that she avoids writing

whenever she can, she spends several hours a day chatting online while sitting up in her

third-floor attic room, talking to virtual friends who she believes are good substitutes for

the human contact she is missing.

In looking at these four lives, one can see that a positive correlation between

money and access to literacy exists. Adelle's limited exposure to the written word as a

young child, having been read only religious pamphlets, as well as George's and Beth's

experiences of not attending school or not learning Braille until the third or fourth grade

are more than likely linked to economics. As George stated, blindness lead to

opportunities that he otherwise would not have had. Conversely, Heather's private

Braille tutor and nearly unlimited access to materials, with walls and walls of Braille

books delivered by the American consulate, illustrate a positive correlation between

money and literacy. Heather was exposed to Braille earlier than the others because o f the

economic situation o f her parents. Her father had a good job with connections to the

American consulate, which meant access to Braille books, tactile materials, and computer

technology.

These profiles also demonstrate that the social status of the blind has not changed

much in the last several decades. Blind individuals have a long way to go in being

treated as equal members o f their families and as contributing members of society.

Adelle's mother took her to faith healers and her father treated her like a child. George's

parents believed that one o f his siblings would need to take care of him for the rest of his

life and didn't believe a blind child would need an education. Heather's parents wanted

her to be educated like her sighted siblings, but her own sister did not believe that a blind

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person could be an attorney. Beth's parents protected her from the rest of the world. All

four faced negativity from parents, teachers, and/or employers because o f their blindness,

but all stated that technology has provided them with the sense of independence they

lacked earlier in their lives.

In spite o f all the obstacles that still exist for blind and visually impaired

individuals, technology means access to books, magazines, and newspapers. It means

being able to read and write as active members of the community. Access to the printed

word has influenced literacy for the blind more than anything else, and this access was

brought about with new technologies. Slates and styluses, typewriters, real to Real tapes,

floppy discs, cassettes, opticons, Newsline for the Blind, and computers and electronic

texts opened so many doors for the blind and visually impaired. But What happened

once those doors were open? Have new technologies changed family attitudes about

blindness? Have new technologies ensured equal education for all blind children? Have

new technologies solved the unemployment rate among the blind and visually impaired?

in order to answer these questions, we need to look at what Brandt (2001) calls sponsors

of literacy, which she defines as "any agents, local or distant, concrete or abstract, who

enable, support, teach, and model, as well as recruit, regulate, suppress, or withhold

literacy and gain advantage by it in some way" (p. 19). The next three chapters focus on

sponsors of literacy for blind and visually impaired individuals, including parents and

other family members, teachers, and rehabilitation professionals, who have influenced the

literacy practices o f all 30 informants.

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CHAPTER 5

FAMILY LITERACY:

PRINT, BRAILLE, AND BEYOND

"The bad thing was my family members over there, my grandmother in particular,

consider my disability to be like a disease, something that needs to be healed, so one

morning my mom told me, 'Come on, let's go,' and I asked her where and she said, 'Just

get up and let's go.' Then I pretty much suspected what was up and I asked my

grandmother and she said...,"

"Here you go," the waiter interrupts, setting a side salad on the table in front of

me, bringing me back to reality, to Mel's Diner, a popular student hangout in Berkeley.

When the waiter leaves, I once again block out the sound of the music coming from the

individual jute boxes at other booths and strain to hear 17-year-old Sava's soft voice as

she continues her story o f the trip she recently took to Eritrea, the country in East Africa

where her parents were bom.

"And she told me that they were going to be taking me to this small village, which

is pretty much a holy place, and they have a church over there, and I went over there with

my mom and my uncle and they listened to the priest talk about opening your heart to

God and another lady was saying how she didn't believe in God but her son has some sort

of sickness, so she brought him to that place and he was healed, and I was over there,

very miserable, cause I wanted to be, cause I just wanted my family to accept who I was

and not try to change me, and they brought holy water from the place and she made me

wash my face with holy water for seven days, and I was very miserable about that. I

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didn't like it at all, didn't want to do it, and I was just very depressed for like a week,

cause I felt like my family did not really support me."

As indicated in Sava's story above, sometimes parents and family members have

difficulty accepting blindness, because blindness is not considered normal. While Sava's

story is one of the more extreme examples, several informants described times when their

grandparents, parents, or siblings used normalizing strategies, including pushing them to

use print rather than Braille. In most cases, print was encouraged if a child had some

residual vision, even when reading print caused frustration and low self-esteem, not to

mention headaches. As mentioned in Chapter 2, many people believe that the problems

with literacy in the lives of the blind are rooted in societal stereotypes and

misconceptions about blindness (Schroeder, 1989. If parents doubt the abilities of blind

children, they may lower their expectations. While Barton and Hamilton (1998) argue

that schools need to move past viewing family literacy as part of a deficit model that

concentrates on what children lack rather than on examining their strengths and that

schools need to move beyond the stereotypes of certain families (p. 207), I argue that the

parents o f blind children need to move beyond their stereotypes of blindness before that

can happen.

In this chapter, I focus on the early literacy experiences these informants had in

their homes, primarily focusing on reading and writing print and/or Braille. If they were

read to at home, who did the reading? If they learned to write at home, who taught them?

How old were they when they started to learn the skills of literacy? According to the

informants, why did their family members help or not help with their reading and/or

writing? The first section o f this chapter looks at parents and other family members who

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read or did not read to the informants during their childhoods and compares the

informants who grew up with sight to those who grew up with visual impairments. The

second section discusses the involvement of parents and other family members pushing

print and/or Braille. The third and final section explores the ways various experiences

with family members influenced the self-identity of these informants. Looking back on

their childhoods, these blind and visually impaired individuals tell tales that provide

insight into the ways parents and other family members can help with the literacy of blind

children.

Reading to Blind Children at Home

Although researchers argue over the specific factors that influence the success of

children in school, most agree literacy experiences at home can make a difference in

children's lives (Auerbach, 1989; Heath, 1983; Sticht, 1988). Of the nine informants who

grew up with sight, eight were read to by their parents. While Smoky, age 73, the son of

a cabinet maker and secretary, did not have specific memories of his mother reading to

him, he was sure she did, as he learned to read and write before going to school.

Michael, age 51, the son of an aerospace engineer and housewife, remembered following

along and realizing that the letters formed words as his father read to him before going to

bed . Sam, a 38-year-old computer programmer originally from Hong Kong, and Yoko, a

34-year-old former concert pianist originally from Japan, said their parents read to them

in their first languages and encouraged them to learn English. Marcus, the 43-year-old

son of a Mexican migrant farm worker, recalled his father reading Paul Bunyan and the

Piped Piper to him. Sarah, age 35, the daughter of a farmer and housewife, recalled being

read to by her mother and older sisters. Claire, age 33 and originally from Mexico,

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remembered her mother, who had only 6 months of schooling but taught herself to read

and write, reading Spanish Bible stories to her and her siblings. Claire said, "When she

read to us in Spanish, she was making sure our Spanish was proper, not the slang, you

know." Only Ayella, a 56-year-old woman who was bom and raised in the Philippines,

explained that her parents didn’t read to her because “they were illiterate.”

Like with sighted children, research suggests that reading to blind children helps

with learning the skills of literacy (Craig, 1996; Stratton, 1996). However, Craig (1996)

found that parents of blind and visually impaired children may lack the resources and

knowledge to help their children with literacy. While many sighted children are exposed

to picture books with printed words and they associate the pictures with those words

(Jalongo, 2004), Crespo (1990) discovered that some parents failed to read to their blind

and visually impaired children because they believed that the pictures would cause

confusion. While Jean, who lost her sight at age two from the black measles,

remembered her parents reading to her as a child, only recently with hearing people read

to her grandchild did she realize the impact that seeing pictures and words can have on

children. She explained, "Although I certainly wasn't aware o f it then, the opportunities

to read books would have been greater if I could have seen pictures, but I don't ever

remember thinking that at the time, but just as I think about it now when I watch my little

grandson, they're attracted by the pictures before they're attracted by the words."

O f the 21 informants who were bom with visual impairments, only 9 said they

were read to by their parents, and only 7 of those 9 were read to with any regularity, or

approximately one-third o f the total 21. Of the seven, two grew up in the pre-television

United States at a time when reading was part of everyday family life (Brandt, 2001).

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Jean, an 80-year-old Caucasian woman who grew up in Chicago, and Bobbi, a 67-year-

old San Francisco Bay Area native, remembered sitting around the dining room table or

in the living room, listening to their mothers or fathers or siblings read out loud. Jean

also recalled listening to the radio with her family every evening. She said, "People just

read, and there were programs on the radio that read stories, a program called The Seeing

Lady, and she came out every day saying a nursery rhyme and then she read a story.

There were all sorts o f ways to be read to if you loved books and wanted to read them."

The informants who were read to by their parents but who grew up after the onset

o f television included Heather, Emma, Akiko, Abdul, and Sava. Heather, age 33,

recalled being read to on a daily basis while living with her parents and sisters on a

military base in Saudi Arabia and thought that reading occurred primarily because her

family did not watch television. Heather said, "Well, we had a TV, but if you plugged it

in, it was so old it would electrocute you." Akiko, a 27-year-old graduate student

originally from Japan, and Emma, a 21-year-old college student originally from Ireland,

recalled being read to on a daily basis. According to Emma, her mother wanted to make

sure that Emma learned the books that her older brothers had read, the well-known

fairytales in Ireland, like Magic Stone, Magic Paintbrush, Little Red Hen, and The

Enormous Turnip.

The other two whose parents read to them regularly had some residual vision and

tried to follow along. Abdul, bom in Ohio in 1979, and Sava, bom in California in 1988,

were raised in bilingual households in the United States. Sava's mother, originally from

Eritrea, wanted to learn English and practiced by reading books in English to her four

children and their friends. Abdul's mother wanted him to know both English and Arabic,

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so she read to him often, especially after the numerous eye operations while he lay in bed

in the hospital and recovered at home.

Other people I interviewed had very clear memories of not being read to. George,

age 48 and originally from Pennsylvania, sat on the couch and watched TV all day, every

day, until he was 8 when a social worker came in and made his parents send him to a

residential school. While her mother read religious pamphlets to her, Adelle, age 77,

longed for someone to read the books on the bookshelves in their house, but Adelle "just

looked at them and wondered what was in them.” Joseph, age 19, a native o f Los

Angeles, recalled playing outside with his two older brothers but had no memories of his

mother reading to them. August, a 16-year-old native of the Bay Area, Said, "I don't

remember ever being read to. Like I would pick up books, but I could never read them."

Simran, a 27-year old law student originally from India, remembered that her parents did

not read to her but that they occasionally told stories. Luis, a 31-year-old man from

Mexico, wished he had been read to as a child and expressed his desire to be able to read

to his own child today. "I don't have the skills and I want to have the skills to read to my

child, cause that's important," he said. "I know that it's important."

In a few homes where the parents did not read to their children, sighted siblings

read to their blind sisters or brothers. Jeffrey, 39 and originally from Chicago, listened as

his older brother read newspaper articles about the Chicago Cubs. David, 38 and

originally from Michigan, recalled that his older sister read to him during his childhood

but later marked up his Curious George books with her own thought bubbles with

phrases like, These hash brownies sure are good." Dawn, 27, originally from Colorado,

made her younger sister read to her, saying, "I was the big sister. I was boss." Gloria, a

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24-year-old woman whose parents were bom and raised in Puerto Rico, made her brother

read things to her once he was old enough, but not books. She explained:

When [my brother] was old enough, I was able to have a person who could, you
know, tell me how long to cook the pot pie for in the microwave or something
like that, and even if he didn't know what the words were, he could spell them to
me, so it was a lot of the back of the boxes for, you know, popping things in the
microwave or reading notes that my mom left behind and the address book.

While no explanation was given as to why the siblings and not the parents read to

these particular informants, one could speculate that the sighted siblings were young and

did not restrict their blind and visually impaired brothers and sisters. Eleven informants

felt as though their parents did not read to them because of the blindness and instead left

literacy education up to the schools. Still, strangely enough, many informants described

detailed memories of learning their letters and numbers from other family members, as

will be illustrated in the next section.

Family Members Pushing Print or Braille

Koenig and Holbrook (2000) argue that early literacy skills are very important for

blind and visually impaired children, including reading aloud, introducing book concepts,

and mimicking behaviors of parents, such as reading and writing. For many sighted

children, emergent literacy starts well before formal education. Children may see their

parents and older siblings reading and/or writing and may model those behaviors (Barton

& Hamilton, 1998). However, if parents lack the knowledge o f working with blind

children, their children may fall behind in acquiring literacy skills (Stratton, 1996).

While a few informants with some residual vision during their childhoods remembered

seeing their parents and/or siblings read or write, only one totally blind informant, Bobbi,

remembered copying the behavior of her mother:

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I can remember she used to sit at the dining room table and write letters to people
I guess in her family and I'd hear the scratching o f the pen on the wooden table, so
I had to do that too and then my letters had to go with hers. I don't know what she
did with them, but I thought that was the real deal, but that was the beginning of
their teaching me how to write. When I heard the scratching of the pen or
whatever, I wanted to learn too. Whatever it was, I wanted to learn it.

Sometimes blind children could not see the literacy activities of their parents, and

similarly they could not see the street signs in their neighborhoods or the images of letters

and words on television. While Gloria was exposed to picture books with print words

and to the signs in the community, she was sighted at the time. Everywhere she went in

their community, her mother pointed out words and she began word recognition.

However, Gloria explained that this practice stopped when she lost her sight from Steven

Johnson's syndrome at age five.

I was starting to learn how to read with picture books and things of that nature
that my mom had ordered. In fact I remember a box coming in the mail and I
would take out the books and look at it and the binding and the pretty colors and I
was like, "I can't read," and my mom's like, "Well one day you'll be able to read
that," but you know at that time, I was just looking at the pages and making up my
own stories, but my mom was showing me the alphabet already and how to
recognize certain words, like the no candy sign, (laughs) in the aisles o f checkout
stands and things of that nature or the word stop, you know for stop signs, and not
just because it was on a stop sign, but to recognize it when it's written somewhere
else. But then in Braille being taught, that was never done at home.

While Gloria's parents stopped teaching her print when she lost her sight, a few

totally blind individuals learned print from parents and other sighted family members.

Heather's parents taught her to print her name, even though "it never looked good enough

for them." Adelle's aunt gave her large tactile letters to play anagrams. While still living

in the Philippines, Beth's sister, 12 years her senior, taught Beth the print alphabet using

raised letters. Bobbi recalled riding the cable and street cars in San Francisco with her

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parents, who taught her to recognize print letters while they were out in the community.

She explained:

You know, they'd show me USA on the mailbox and anything that was raised and
it was amazing how much stuff is, and we lived only two blocks from Golden
Gate Park, so we spent a lot of time in the museum, so that's where I learned a lot
of what things looked like. In those days, they didn't have anything roped off, so
you could go look at the cannons and the armories, so anything that had tactile
surfaces, I went and looked at it. If they had to lift me up on a ladder, I went and
looked. I wanted to see everything.

When Bobbi was seven years old, her mother died of polio, and she and her father

moved to the East Bay to live with her aunt. While Bobbi appreciated that her parents

and later her father and step-mother taught her enough print to recognize raised or

engraved letters, she thought they should have pushed her to learn Braille. At the time

when Bobbi was in school, most blind children were attending residential schools and

learning Braille, but Bobbi's father sent her to a public school in Berkeley, even though

she couldn't read print or Braille. She said:

My family was really negligent cause they didn't know how to deal with
blindness. They didn't know anything positive about blindness. They saw a lot of
negative stereotypes about blindness down on Market Street in San Francisco. I
would just have to say that they never face the reality that I was blind, so I didn't
even learn Braille.

Finally, when Bobbi was in 1Oth grade, she learned Braille on her own. The

teenagers from the California School for the Blind started attending the public school in

Berkeley and gave her the materials. Bobbi described the process o f learning Braille as

easy:

You know the kids, when I went to Berkeley High, they just gave me the rules
and the symbols and I just went hone and learned them cause I had to have it. Oh
my gosh, the doors were opened for me, so I went home and learned Braille by
myself. That happened in the 1Oth grade. One of them said here's a slate and
stylus, here's the alphabet and here's how it's written and then you turn it over and
read it. You gotta memorize it. Okay, so I went home and learned that and then

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the kids would give me sheets of paper with some of the signs and then I learned
those and then up to grade two. I mean, I was anxious to learn and that was the
ticket. It opened the doors because I wanted to see what sighted guys saw. I
could read it myself and look at the spelling and punctuation and grammar... I
could compete on terms of equality.

A few informants with some usable sight as children had access to large print

materials and their parents or other family members tried to help them with their reading

and/or writing. Bom and raised in California, Anthony, age 32, learned to read using

large print. He said, "I had a pocket magnifier so I was able to walk around the home and

get about anything and read it, even the newspaper, unless it was really small print."

Daniel, a 24-year-old student at a community college, recalled that his sisters taught him

to write his name on their chalk board on the sidewalk in front of his parent's house.

Because Daniel could write his name using huge letters, the task of writing was easier

than reading, as even large print books were not large enough, as described in the

following dialogue:

DANIEL: I hated little kids' books. When I was a little kid, I tried to read them
and it was such slow going. I do remember that. I remember being at my
grandma's house and we had the little dog that could or the little yellow dog...
PRISCILLA: The little train that could?
DANIEL: I don't know, but I tried to read it out loud to them and it was so slow
and pain staking. I just remember how much it sucked.

Abdul, a lawyer in the Bay Area, grew up in Ohio. As mentioned earlier, Abdul's

mother read to him in both English and Arabic. His mother signed him up for talking

books on tape when he "was like two or something ridiculous." She ordered books that

were a grade or two ahead o f what the other children his age were reading. She taught

him how to read and write using large print; however, even though he had a progressive

eye condition, she did not teach him Braille. By the time he entered middle school, he

was no longer able to use magnifying glasses or a CCTV, a close circuit television system

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that projects a magnified image onto a screen, and started using Braille in the sixth grade.

He explained that he would use Braille more today if he had used it at a younger age:

I didn't really use Braille until I was starting in the sixth grade, so I never really
became very fast. I mean I'm not slow, but I couldn't read like a book out loud in
Braille.. .and I used like a Braille and Speak and later a Braille Light for a while,
but I was never really efficient at it, and I never really learned to use a slate and
stylus efficiently, so I didn't ever use it fast enough for that to be a notetaking tool
or anything, so you know, there are blind people who just fly on the slate and
stylus, so they can read Braille much faster and write Braille much faster than I
can.

Bom in Chicago in 1965, Jeffrey had enough sight to read large print when he

was a child. While he rarely read, as he read very slowly, seeing only a letter or two at a

time, he remembered that his older sister read all the time. He said, "I was probably

seven or eight and we were going from Chicago to San Diego in a car and my sister

would never put her book down, and it's like, 'Hey Mary, the Grand Canyon,' and she

wouldn't look up from her book and my parents would get mad at her, and you know it

was probably some Nancy Drew crap or something like that."

Although Jeffrey wasn't read to as a child and he wasn't taught to read at home, he

learned to write at home on yellowish paper with thick black lines. For Jeffrey, this was

not a positive experience. He not only had a hard time seeing the paper, but he also

found himself in the middle of arguments over the correct way of teaching a visually

impaired child how to write. His mother and three aunts worked as teachers in the

Chicago school district, and he said, "I definitely remember being at the dining room

table learning how to write an A, and of course the way Aunt Margaret did it versus the

way my mother did it was different, and I got caught in the middle."

From the things that Jeffrey said about his parents’ interest in his education, they

wanted the best for him, which for them meant sending him to a school for the blind

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where he could learn alternative techniques for reading and writing, including Braille.

However, Jeffrey explained that his parents' plan didn’t work out.

So I think I was six or seven, maybe eight, when my folks came to me one
evening and said, you know, "We're going to send you to a special school where
all the boys and girls are just like you," and you know, I don't know what it
triggered. I'd have to pay you a $100 an hour fee for you to tell me, but actually,
anyway, the next day I burned the garage down, and so the talk about sending me
to a blind school ended abruptly.

Because Jeffrey did not learn Braille at home or in school and, because of his

visual impairment from retinitis pigmentosa, he read print very slowly, so he used

National Library Services for the Blind (NLS) to get many books on tape, including

Dracula, which he enjoyed. However, many books for school were not available in an

alternative format, so family members or volunteers from catholic charity organizations

read many o f his books onto tape. This went on from elementary school until he attended

college. Jeffrey described the problems that stemmed from one such reading

arrangement:

In the early 80s, a lot of stuff wasn't on tape, and you know I'm sure this is going
to make bulk payments for some shrink, but my human sexuality text was put on
tape by my mother, father, and aunt, which is quite something to live through, let
me tell you. Just having your mother describe masturbation is... And they put in
editorial comments, like, "That's disgusting," but um, I mean they were willing to
do it, you know, where I grew up, south side o f Chicago, Irish Catholic very
conservative, you know, I mean at least they could do that, um and they were
willing to do it.

Like many of the informants, Jeffrey lacked privacy with his reading and writing

experiences at home because he lacked the materials and skills to read and write himself.

Even in college, Jeffrey depended on his parents to read the books he was reading for

classes. While sighted children are able to read books in remote areas and keep journals

and diaries on private thoughts (Brandt, 2001), this proves difficult for children who have

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limited sight and/or do not know Braille. Computers have helped in this area, but many

children would not want to risk that their parents or siblings might read their private

thoughts. Only one informant, Dawn, kept a journal during her childhood after she

learned to read and write Braille in school. She said:

I could keep a journal. Nobody could read it and I did and I keep... I mean, I still
have all my like journals in Braille, you know.. .one o f my teachers when I was
learning Braille told me to start keeping a journal and I've kept everything and so
I have like these horribly and sloppy where Ws and Rs are confused all over the
place, you know journal entries, but it was the first time I could write and it was
awesome, but I find sometimes like I can't fathom not having that freedom in my
life.

Most parents pushed for their visually impaired children to learn print rather than

Braille, as in the cases of Jeffrey, Maria, David, Simran, Abdul, Daniel, Sava, and

August. O f these eight individuals, only Sava and August, the two youngest, can read

print today, and they struggle to read with their CCTVs. Though Sava learned Braille in

school, her parents did not encourage her to use it.

Even though the majority of the parents of Braille readers did not learn Braille

and parents o f the print readers did not push for their children to learn Braille, many

parents were very supportive of their children's literacy in other ways. While Heather's

parents did not learn Braille, they exposed their daughter to as much Braille as possible

by having the American Consulate deliver old books to their home in Saudi Arabia, as

already mentioned in the previous chapter. Heather's parents wanted her to read and

write along with her sighted siblings. They were concerned that Heather might not keep

up in school, so they hired tutors to come in to teach her Braille before she went to

kindergarten. The tutors provided flashcards with the letters in both Braille and tactile

print, as well as a magnetic board with magnetic letters.

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Gloria's parents pushed for Braille after she lost her sight, but she learned it from

an itinerate teacher, as did Jean. However, most parents did not expose their children to

Braille, even when two or more o f their children had visual impairments. For example,

August's blind maternal grandparents and her mother learned Braille, but August and her

two blind siblings did not. Similarly, Daniel's blind mother and two blind siblings

learned Braille in school, but Daniel did not. Maria and her brother were both blind and

learned Braille in school, but their parents did not help them with Braille at home.

Maria, a 37-year-old woman whose parents came from Mexico, now the mother

of 4 young children, stated that her parents depended on the school to teach her, as well

as her blind brother, to read and write because they lacked knowledge of working with

blind children. Maria recounted some childhood experiences:

I guess I was having difficulties because [the teachers] would have like these little
foamy kind o f letters that they'd hold up and go, "What's this letter?" you know
kind o f stuff, and I guess I was having trouble with it cause I know that the
teacher actually sent those things home with us, and I remember where they were
kept, but I don't remember ever my mother, you know, assisting in, hey let's
review your letters, you know kind of thing, so I think she kind of left a lot of it
up to the school system. You know, my parents knew what they needed to do but
didn't have the tools to assist, more less assist a person with a disability. They
were dealing with partially sighted kids who, well, if you got the checker board
that was a little bit bigger, then the kids could see it. If we got a Tic Tac Toe, you
know, obviously you can write it down, but there was this Tic Tac Toe thing that
they bought that was like jumbo size that they'll be able to see the lines, the
contrast. Um, I remember one time they were going to find some big coloring
books that were like humungous. I don't know, two feet tall, and mine was The
Night before Christmas. I remember that, but it was like large print. You know
that was cool cause I could read it myself, but it was always print.

Sava and one of her three siblings were bom with visual impairments and learned

Braille in school, but her parents did not encourage it at home. Sava said:

I don't mind, but if you ask my parents, I'm not blind. I'm low vision. Um, I
guess [reading print] was okay, almost normal. Up to the third grade, I was pretty
much normal, no big deal, no big difference. In the fourth grade I was reading

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Braille, but I can't ask my parents what's this symbol. What does JD stand for, so
there's that.

O f the 21 informants who grew up with visual impairments, 14 learned Braille

before their teen years. All 11 who had no sight learned Braille, but only 3 of the 10 with

some residual vision learned Braille. Of the 14 informants who learned Braille during

childhood, the parents o f only 2 (Emma and Akiko, both from other countries, learned

Braille so that they could help their children learn to read and write at home, as well as

help with homework assignments and other school activities, which will be described in

more detail in Chapter 8.

While most o f the participants learned typing and computer skills in school or

through rehabilitation programs, a few learned from their parents. Abdul's mother taught

him how to type, as she thought typing would be an important skill for a visually

impaired child. Likewise, Heather and Emma learned how to type earlier than other

children. Their mothers sent them to typing classes when they were in grade school,

which was unusual for the time. On the other hand, fathers helped more with computer

literacy, as demonstrated in the accounts of Heather, Akiko, and Emma. Emma recalled

her mother helping with typing and her father designing a speech program in the

following passage:

My mom sent me to like 20 hours of typing training, which I just did on a regular
computer that didn't have any accessible anything, so I did that at a regular school
where they teach sighted people how to type and then because I sort o f needed to
be able to read over my work when I was actually typing for practical purposes,
my dad invented a speech synthesizer program like Jaws, just not as
comprehensive, that had a word processor, you know, so it allowed me to read
over what I had done and spell stuff, basically the commands that you can use in
word, save a document, print a document, and so I used that as well for writing
stuff, for homework assignments and giving them to teachers.

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As illustrated above, family members influenced the literacy activities and the

reading and writing skills of the informants, whether they learned to read and write print,

Braille, both, or nothing at all. Still, these experiences cannot be understood without

considering the attitudes of family members and how those attitudes influenced the self

identity of the informants. In the next section, the informants discuss their feelings on the

topic.

Family Attitudes and Self Identity

Barton and Hamilton (1998) argue that the home is the primary domain in

people's literacy lives and "central to people's developing sense o f social identity" (p. 9).

Particularly, family attitudes and support can influence the self-esteem of persons with

disabilities (Antle, 2004). As illustrated previously, parents and siblings can influence

the ways that their blind and visually impaired family members learn to read and write.

While some of the informants had positive literacy experiences at home, many had

experiences they described as negative. Adelle's mother read only religious pamphlets to

her. George's patents kept him at home and out of school, because they failed to

understand that blind children could learn. Gloria's parents stopped teaching her to read

when she started losing her sight. Abdul, August, Daniel, David, Jeffrey, Sava, and

Simran all remembered struggling to read print in their homes. All felt as though they

were limited because their parents and other family members viewed them as sighted

children with eye problems rather than accepting their blindness and finding the resources

to help. In one case, even though the resources (people in the public school system) were

ready to help, one parent refused.

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From age 8 to 18, Dawn, who was bom with retinal blastoma and had both eyes

removed as a young child so the cancer wouldn't spread, spent the majority of time in

foster homes, switching families several times, but she attended public schools in the

rural community in Colorado where her mother lived. She used books on tape and had a

full-time aid who worked with her, but she did not learn Braille until age 11. When I

asked about not learning Braille, she responded:

That {decision to not teach Braille} was made by my mom. The school district
and social services kind of had been pushing her to teach.. .to allow them to teach
me Braille for a while, and they finally were like, "we can't continue to provide a
full-time aid. She needs to have some sort o f literacy support," and so that
decision was a joint one with some pressure. My mom made that decision, but
only with pressure. I was the only blind kid. I don't really know. I think there
was some sort of weird thing that, you know, sort of denial. Blind is Braille.
Blind is bad. Braille is bad. And it was a rural place. They didn't kind of have it
together until I got a little bit older, but they definitely were pressuring her as I
got older in elementary school, but um when parents.. .you know parents can have
the final say.

Surprisingly the parents of 15 of the 21 informants who grew up with visual

impairments did not restrict the physical activities of their children. Without using a

cane, Emma ran from her house to the post office in Galway to get the mail for her

mother. Bobbi climbed trees and roller skated in parks in the Bay Area. Children with

varying degrees of vision rode bicycles, including Anthony, August, Daniel, David, and

Gloria, who had limited vision, and Heather, Bobbi, and Joseph, who had no sight. Many

of these participants said these activities involved accidents but that their parents

continued to let them be kids.

Joseph grew up with his mother and two older brothers in what he described as "a

rough neighborhood in LA." He said that he lived his "life like a pretty normal kid with

sight." Laughing, he told me that he had several accidents and that eight involved

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stitches but that he continued to ride bikes, skateboards, and scooters. However, when

asked about his family's attitudes of blindness and the capabilities of blind people, his

tone changed.

JOSEPH: Um, naive, very naive. A lot of them didn't even want to deal with me,
except for my mom and my brothers, put it that way.
PRISCILLA: So like in what ways of not dealing with you?
JOSEPH: For example, if my brothers went over there to my grandparents' house,
my grandparents really wouldn't want me over there unless my mom was there. I
didn't get much when it came to holidays because they figured a blind person
really didn't have much interest and they didn't know what I liked. They never
tried to get to learn what I liked either, which is because they didn't know me,
they didn't really even try to make an effort.
PRISCILLA: I see. But you said your mother was okay?
JOSEPH: She didn't try to limit me, but whatever she didn't know how to teach
me, she would never ask around. She never put in too much effort in asking
around and if she asked around, she didn't ask another blind person. It was
someone who was sighted.
PRISCILLA: Now did she learn any Braille?
JOSEPH: No, and that's something too I recommend for all parents of a blind
child is learn Braille and read with your kids.

Fifteen informants stated that the attitudes of family members affected their lives,

including their literacy experiences. Thirteen said that their parents had lower

expectations for them as blind children. For example, Jeffrey said, "[My parents']

expectation was I'd never get a job and I'd live at home in their basement the rest of my

life and so the expectations were not very high.. .The expectations weren't very high at all

compared to siblings and stuff like that." Because Jeffrey had some sight as a child, he

tried to pass as sighted.' However, with retinitis pigmnetosa, which is a progressive eye

condition, he continued to lose sight over the years. While he learned some blindness

skills, including how to use Jaws on his computer and a guide dog for mobility, he said

it's hard when family members are not supportive. "Even within the last year, you know,

my brother, who lives a few miles from me, you know, said, 'Well, the thing about blind

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people, Jeffrey, is they're all creepy and scary.' So it's like thank you for that support,

jackass."

Like Jeffrey's parents, family members of other informants seem to have lowered

their expectations. A few informants met blind individuals deemed successful by their

parents but not by the informants themselves. Because their only experience with blind

people was seeing them beg on the streets of Chicago, Jean's parents thought of a blind

music teacher as successful. Jean said, "She dressed nicely and she wore makeup and my

parents were just exceedingly encouraged by her." Similarly, even though they pushed

her to learn Braille and read along with her sighted sisters, Heather's parents lowered

their expectations and took her to meet a blind musician, a stereotypical profession for

the blind, a person they thought of as successful. Heather recalled the experience:

The very first blind person I met was when we were in Saudi Arabia and we went
to a special thing because my parents were very much pushing me to do music
because that's what they thought all blind people should do and so they forced this
thing. I was seven or eight and so they forced me to go meet a blind guitar player
that had come to Saudi Arabia for some reason and it was like at the Marriott or
the Towers or something and it was like in a very, you know, very whatever
restaurant in one o f the main cities in Saudi Arabia and we went to see this man
named Turly Richards, who was some blind guitar player.

According to Simran, her parents' idea of success for a blind person was that

person having a job, even if the person had no blindness skills. When Simran went to her

eye doctor with her parents, she met a legally blind receptionist, a woman her parents

viewed as successful, as described in the following passage:

SIMRAN: Gosh, she was such an interesting and disturbing, now that I look back,
example o f blindness because she clearly was legally blind. No question about
that, but she had all these visual aids and she would never walk with a cane. She
worked in the doctor's office, my eye doctor, and her job was to help people adapt
to whatever visual condition they had, so one of the things that she taught me was,
since I don't have enough o f a field, like peripheral field, that what I should do is
I should walk, and she showed me. She said you have to walk, nodding from side

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to side, (laughs) That's the most ridiculous.. .and I thought to myself, this is the
most ridiculous thing.
PRISCILLA: And how old were you?
SIMRAN: I was almost 11 when I met this woman, and it was so ridiculously
funny. She's like you know this is how you take account for your loss of field so
you nod to the right, nod to the left. It's as if you were doing a cane tap with your
head. Can you imagine? (Simran imitates the woman's behavior and walks
across the living room floor. She makes sounds as she walks, so that I can hear
her head turning from side to side.)
PRISCILLA: It would look pretty funny.
SIMRAN: It did look pretty funny, (laughs) The fact is I laugh at that, but you
know she was really serious and she's like, "So the way you have to walk is this
and then like this and then like this, so that each step that you take, you put your
head in the opposite direction, so that you never lose track o f your visual field."
I'm thinking like God dammit. Why didn't they just tell her she should use a
cane? Why didn't you tell other people that they ought to use a cane? But that
was my first memory and it was funny but it was not like you ought to get some
blindness skills like cane travel and Braille. That was never her attitude. It was
very very weird, and, well, now I look back and it was very weird at the time, but
my parents thought o f her as very accomplished because she had a job in a
doctor's office but, you know, she lived with her parents.

Only two informants recalled being introduced to positive blind role models.

Gloria met positive role models in the National Federation of the Blind. She said, "When

I was nine, I met Mark Bailey (a pseudonym) and he was the first blind person I had ever

met who was going to law school of all things, and I thought that was really cool that

there were blind lawyers out there. He told me that blind people could do all sorts o f jobs

and I had just never thought about that, so I would say he was kind of the first person I

really was wowed by."

During his teens, Abdul met a blind judge through the National Federation of the

Blind, which is one reason he decided to pursue a career in law. However, even though

Abdul met successful role models, learned both print and Braille as a child, graduated

from college with bachelor's degrees in political and social thought and environmental

science, received a JD law degree, and found a job as a disability rights attorney, which

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most people would view as very successful, his own attitudes o f blindness were

influenced by his parents, as illustrated in the following dialogue:

ABDUL: I don't have any siblings. My parents decided not to have any more
children after me. A wise decision I think.
PRISCILLA: Wise decision? Because of blindness or because of parents.
ABDUL: No, definitely because of the blindness. I mean while I agree that
blindness is not a debilitating condition, it's not one that one should give, that I'd
want for somebody else, you know what I mean? SO I agree. I mean if I knew
that my children, that I'd pass down glaucoma, I don't think I'd want to have
children.

The above passage speaks volumes about the attitudes of parents of blind children

and how those attitudes can infiltrate every part of a blind child's life. How can a blind

child feel worthy if the parents openly admit they would not want another blind child?

What does the above example say about Abdul's sense o f self identity and self worth

when he says that he would not want to bring another blind child into this world? What

does it say about the idea of what is considered normal?

Unlike parents who seemed to lower their expectations for their children, siblings

tried to protect their blind and visually impaired brothers and sisters. Sava told of an

experience that she had when her sister's friends were visiting their house. In the

following example, one must wonder if Sava's sister wanted Sava to seem normal to the

friends or if she wanted to normalize blindness:

SAVA: I just thought of something funny. My sister is so familiar with Braille


but she can't read Braille, but me and my brother read Braille, and one day she
had two o f her friends over and they're not familiar with Braille and they were
just so amused. One of her friends, she's like 10 years old, and she was like,
"What does this say. Read it. No you're looking at it." She didn't believe that I
could read Braille. She was just joking around and having so much fun and then
my sister's like, "Braille is so normal. Like four out of five people can read
Braille. There's nothing weird about it or anything." So she was kind of trying to
protect me, but at the same time, she was trying to get her friends to stop making
a fuss about Braille and just be quiet about it, so that's just interesting.
PRISCILLA: SO she wants her friends to think Braille is normal?

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SAVA: Yeah, but I sort o f think there was more to it, as though Braille were a
sensitive matter and her friends shouldn't fuss about it.

Some of Sava's other comments suggest that her family's attitudes about blindness

led to her own reluctance to read Braille. For example, Sava said that she always felt

uncomfortable reading Braille in front of her parents. She explained:

SAVA: Yeah, I felt shy about reading in front of my parents, reading Braille in
front o f my parents, and even one day my dad got out a piece o f Braille paper and
he demanded that I read it in front of him, so you know, maybe I’m sitting on the
couch and I'm reading a Braille book and guests come over to our house, I most
likely close the book, go into my bedroom and continue reading.
PRISCILLA: Why do you think that is?
SAVA: Because I felt that it would be embarrassing to the family or that the
guests would feel uncomfortable and of course I felt uncomfortable.

As I listened to the sound and sense of sadness that came through the voices of

these informants as they recalled the way they felt at times during their childhoods, I

started wondering why the parents let these informants ride bikes and scooters and

skateboards. How could they allow their blind children to go out of their homes and onto

the streets outside and yet not allow them to achieve their full potentials with literacy

learning by teaching, or at least encouraging, them to use the most appropriate medium

for reading and writing? By lowering their expectations, by treating their blind children

differently than they treated their sighted children, by not looking for the resources to

help with literacy, it appears as though most parents gave up on their children before even

giving them a chance.

Summary

In looking back to the beginning of this chapter, to Sava's story of her trip to

Eritrea, one must ask why Sava's family did not accept but instead tried to cure her

blindness. One must ask why Sava's mother did not want her to use the word blind. One

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must ask why Sava felt embarrassed reading Braille in front o f her parents and their

friends. At age 17, Sava is beyond her years in wisdom and I believe she knows the

answers to those questions, as her wisdom comes through in her advice to parents of

blind children. She said:

Give the children the chance to learn and don't ever refer to print as normal.
Think of Braille as just another language, like Spanish. English is not a normal
language. It's just one of the languages. Braille is one o f the forms of writing, so
if parents and teachers thought o f Braille as just a different form of writing and
didn't think of print as the superior form of writing, the blind child would have a
better chance o f becoming as good a reader and writer as a sighted child, so that's
my advice.

As this chapter illustrates, many parents and other family members of blind

children push print rather than Braille. While parents may believe they are helping their

children by teaching them to read print rather than Braille, by teaching the mode of

reading and writing that most people view as normal, the informants in this study reject

that idea. Only two o f the eight informants who learned print as children can read that

print today, and those two have progressive eye conditions that may cause them to lose

more sight.

Current research illustrates that it is important to read to all children, including

blind children (Craig, 1996; Stratton, 1996). Eight out of nine informants who grew up

with sight recalled pleasant moments of being read to during their childhoods, and these

experiences did not appear to be based on the economic or educational level of the

parents. On the other hand, of the 21 informants who grew up with visual impairments,

only 7 had memories o f being read to on a regular basis. Why this discrepancy? From

the stories of these informants, I assume that the parents and other family members o f the

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visually impaired children lacked information about blindness and/or did not believe that

blind and visually impaired children had the ability to learn.

This chapter illustrates that family attitudes influenced the learning experiences of

these informants. Many parents lowered their expectations for their children, especially

based on the amount of sight the child had. Most parents depended on the school system

to teach their children to read and write. O f all the informants, the parents o f only two

learned Braille so they could help their children with reading and writing. As stated

earlier, these cases will be described in detail in Chapter 8.

Unfortunately, many people think of print as normal and Braille as not normal.

While only 14 o f the informants learned Braille during their childhoods, 24 of the 30

informants expressed the importance o f learning Braille, even those who were not Braille

readers, those who were not taught Braille because they had enough sight to read large

print as children but cannot read print or Braille today. However, as illustrated in the

example of Abdul, the idea of what is considered normal reaches well beyond Braille or

print. If parents and other family members believe that blindness is not normal, that

blindness is bad, blind and visually impaired children will face more difficult challenges

in other areas of their lives, including school, as will be illustrated in the next chapter.

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CHAPTER 6

SCHOOL LITERACY:

READING, WRITING, LISTENING, LEARNING?

When I was in kindergarten, they were teaching people in my class how to write,
and I guess like put a space between words and they were doing something about
like, I think they used two fingers per space. There was something that everybody
was learning how to do with their hands so that their name, their first and their
last name, had like a balanced space look, and all I was learning how to do was
write the J, and I was really struggling with that actually, because they kept saying
I wasn't holding the pencil correctly. I wanted to like basically fist grip it instead
of holding it right. That's kind of my earliest memory.

Barton and Hamilton (1998) argue that "socially powerful institutions, such as

education, tend to support dominant literacy practices" (p. 10). Luke (2000) claims that

literacy education "is about institutional access and inclusion" (p. 449). Like parents,

many teachers try to normalize blind and visually impaired children by teaching them

print rather than Braille, as illustrated in Dawn's memory above. In public schools, this

normalization can lead to exclusion and isolation, and as Gore (1998) argues, exclusion

and isolation are the negative side of normalization. While the literacy experiences of the

informants who attended public schools varied greatly, partly depending on the medium

that was used for reading and writing, many of the informants who were mainstreamed in

the public schools lacked access to written documents and failed to be included in literacy

activities. Often informants did not remember the names of the books they read for

classes but instead remembered the social circumstances going on around them during

their literacy activities.

As illustrated in the last chapter, many parents of these blind and visually

impaired informants did not know what they could do to help with literacy education and

hoped that the schools would teach their children to read and write. This was especially

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true for totally blind children, as 6 of the 11 had minimal or no literacy instruction at

home, including Adelle, George, Luis, Dawn, Joseph, and Beth. While Adelle and

George learned to read and write using Braille in residential schools for the blind, they

described these schools as safe environments that isolated them from the rest of the

world. As mentioned in chapter 2, mainstreaming blind children and children with other

disabilities was meant to integrate them with their nondisabled peers (Meacham, 2001);

however, the majority o f the informants who attended public schools recalled literacy

activities that led to feelings of exclusion and isolation, as illustrated in the above

example of Dawn.

In this chapter, I explore the literacy experiences of the informants who attended

public schools in the United States. In the first half of the chapter, I offer an overview of

the collective experiences of the informants, including those who used Braille, print,

both, or nothing. The first section looks at the positive experiences with teachers in the

public schools, when the blind students felt as though they were included in literacy

learning. The second section focuses on the school experiences that the informants

described as negative because they felt excluded from classroom activities. The third

section looks at extra-curricular activities and the reasons why informants got involved or

stayed away. In the final section, I focus in on two informants, Daniel and August, both

students in the San Francisco Bay Area. Their stories demonstrate the ways the lack of

support or misdirected support in public elementary schools can discourage blind

individuals and lead to more frustration in high school and beyond.

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Teachers Who Are Teaching

While blind children undergo a Literacy Media Assessment (LMA) defined by the

Individuals with Disabilities Act (Idea), which recommends visual, tactile, and an

auditory media and determines the student's primary learning medium to decide if the

student is functionally blind, literacy for visually impaired students is very complicated.

Out o f the 16 informants who attended public schools as blind or visually impaired

children in the United States, 10 learned Braille, but only 5 started learning Braille when

they entered the public school, including Jean, Heather, Gloria, Joseph, and Beth. Bobbi,

Maria, Dawn, Abdul, and Sava learned Braille later. The other six informants learned

print. Of these 16 informants, 7 described positive literacy experiences in school. O f

those 7, 5 learned Braille upon entering school, 1 learned Braille before age 13, and 1

learned only print.

All five informants who learned Braille when they started in elementary school

described positive literacy experiences and attributed most of them to teachers. This

makes sense, as blind students spend a lot more one on one time with their teachers

and/or aids than they spend working in groups with other children or working

independently, and many times blind children work with the same teachers for years. For

example, Joseph said, "I started learning Braille from my first grade teacher who was an

actual braillist. She did numerous books and what not for us and she taught me the first

five years of my life, probably even more."

Like Joseph, Beth had many positive experiences in the public school, as

mentioned in Chapter 4. When she moved to the United States at age nine, she entered

the fourth grade but was working at a first-grade level. In spite of the challenges, Beth

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described her experiences as positive. Her VI teacher worked with her one on one for

two years and exposed her to lots of books, including the Goosebump Books, and

encouraged her to read more and more.

As mentioned in the last chapter, Jean grew up in Chicago, Illinois. At the time,

during the depression, most blind students in Chicago attended residential schools. Jean's

mother wanted her to attend their Catholic school close to home, but the Catholic school

"had no notion of what to do with a blind child," so Jean's mother then went to the

Chicago Board o f Education, where she met a man who was in charge of what we today

would call special education, a new program that had been introduced in the cities of

Chicago, New York, and Cleveland. Because Jean was too ill to attend school when she

was five and six, the school sent a partially sighted woman who had graduated from the

Illinois School for the Blind to work with Jean three days a week. Jean remembered this

teacher with fondness:

Now she had no teaching experience whatsoever and no knowledge. She could
just do it any way she thought. She was a bright and inventive young woman and
so she got four little blocks, no six little blocks, and taught me to build the letters
out o f these little blocks. Then the school gave her a Braille writer that she could
use, the old Braille writer, and so when we got to the point of reading Braille in
dots, she would write sentences for me herself. We didn't have any books. She
just did it all herself, so that's how I learned Braille. It wasn't according to any
theory in the world.

Like Jean, Gloria was too ill to attend the public school for kindergarten, so the

school provided a teacher to come to their home three days a week. However, unlike

Jean, Gloria had negative experiences with the home teacher and only began learning

realistic techniques for reading and writing when she was mainstreamed, as illustrated in

the following passage:

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In kindergarten, I had a tutor, so I actually used cut-out felt letters on a felt board
for learning how to .. .1 don't even count it as reading or writing because it was
putting letters on a board to make words and they were print letters, um, and that
wasn't to me reading or writing and I would say that to my teacher, and hat's when
my mom after a year said I know blind people read dots because my mom was
concerned that I wasn't really reading or writing and so when I got mainstreamed
into the public school system, that's when I really right away was enrolled in the
Braille Institute library and RFB and D and all those places.

In the first grade, Gloria was mainstreamed in the public school and had a VI

teacher who taught her Braille. She had very positive experiences with this woman, a

woman she keeps in contact with today after almost 20 years, a sighted woman who

believes Braille is a necessary tool for blind children. Although many blind and visually

impaired students only have an hour or two of Braille instruction each week (Mullen,

1995), Gloria worked on it with her VI teacher in the Resource Room every day. She

described her excitement:

I remember wanting to learn more and more, like you know, I think I can learn
another contraction today or something, you know, but basically I think I
completed the whole Braille code into my second-grade year, but during all that
time in terms of being taught reading and writing, it was mostly my VI teacher.
My Vi teacher especially encouraged me so much to read and write in Braille and
even on the computer when I was learning how to type, to write stories, make
them up and then we would put tactile.. .we would emboss it in Braille and the
Braille clerk would type in between the lines in print so it was accessible in
Braille and print, and then you put little tactile pictures, you know whatever I felt
was appropriate on each page and then we would bind it and give it a title and all
that stuff so it made it fun. It made me want to write and read more.

Gloria's school had a Resource Room with a Braille library, so she checked out

books all the time. As her school was not close to her home, she spent a lot of time on

the bus reading books. She attributed much of her motivation to her VI teacher, as well

as her parents. Her goal was to check out "every single book in that library by the time

she was out o f elementary school." She started alphabetically and would take books

home. Because she spent a lot of time travelling on the "special bus" between her home

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and the school several miles away, she had a lot of time to read. Gloria carried the

positive school literacy practices into other parts of her life.

While the informants above described many o f their literacy experiences as

positive, the above examples also represent the isolation that occurs when blind and

visually impaired students learn Braille in a separate classroom. The informants were not

included with the other students during the first few years of their public school

education. Sava, who used Braille, described positive experiences with teachers who

included her in class discussions; however, she said the positive experiences only

occurred once she reached high school. She said the poor teachers made the good

teachers stand out even more. Although she often felt as though she was not part of the

class, one teacher, her AP English teacher, never left her out of the discussions. She

explained:

I had this one teacher last year. His name is Mr. S., and he was so good. The
Resource Room is right across the hall from his class and whenever he forgot to
give something to the Resource Room teacher, he would stop the class, go across
the hall, give it to her, wait for her to print it in Braille, and then continue, so he
never wanted me to be at a disadvantage. He would ask me questions during class
and it was just really good.

While most of the positive literacy experiences informants recalled directly

involved teachers, Gloria and Anthony demonstrated that contests are important for blind

and visually impaired children, because blind and visually impaired children can be

included in such activities, no matter if they use Braille or print. Gloria, a Braille reader,

and Anthony, a large print reader, remembered the encouragement of their teachers for

such contests and the sense of pride they felt in accomplishing their goals.

GLORIA: I really think the Braille Readers are Leaders contest effected me a lot
because that was a period of time where I was really young, so I was easily
influenced, but I had so much support from everybody I knew to read, read, you

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know, read this page, read this book. I had so much positive encouragement that
it was really cool and it made me know that Braille was, and I realize that reading
is cool and it can be cool and fun.
ANTHONY: I think the thing that really influenced me as far as being literate and
knowing about things and being able to communicate is um we had in elementary
school a series o f reading contests, you know, how many books can you read and
report on in a certain amount of time, and it was right around the 84 Olympics so
we kind of did it Olympic style where you had the golden rings and you had the
gold, bronze, and silver and things to kind o f aim for and we had like a book
reading contest and prizes and stuff. That was very influential on me, being able
to read and kind o f being kind of competitive about it. It just kind of motivated
you to continue doing reading on your own.

While the Braille Readers are Leaders contest was not a school sponsored contest

but was instead sponsored by the National Federation of the Blind, Gloria’s teacher

encouraged her to read as much as she could. Such contests may help create confidence

for blind and visually impaired students, and school-sponsored contests may help

students feel included in regular classroom activities, but the reverse can be true if a blind

or visually impaired child is not using the most appropriate medium for reading and

writing. Gloria was taught Braille because she could not read print at the time. Anthony

used print because he could read it fairly quickly. However, of the six informants who

learned only print, only Anthony described the majority of his school literacy experiences

as positive. The others, including David, Jeffrey, Simran, August, and Daniel recalled

negative experiences, which will be illustrated in the following two sections.

Exclusion in Inclusion?

Mullen (1995), Rex and Richesin (1990), Schroeder (1989), and Spungin (1990)

have looked at the low level of literacy skills among blind and visually impaired children.

As seen earlier, teachers can impress their blind and visually impaired students in a

positive way. Unfortunately, the reverse also can hold true if teachers do not include

blind and visually impaired children as part of the class. Several informants recalled

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sitting in class doing nothing while their classmates were learning to read and write. As

illustrated at the beginning of this chapter, Dawn wrote the letter J while the other

students learned the entire alphabet. Bobbi said, "Through the ninth grade, I just sat

there, you know, and did what I could." These informants had not learned Braille and

had difficulty participating in literacy activities.

While the informants who learned Braille early on in their schooling had positive

literacy experiences, as described in the previous section, Jean and Beth also remembered

negative experiences. However, the negative experiences occurred in the regular

classroom, not with their VI teachers. Even though Jean learned Braille, even though

Jean could read and write, one of the teachers in the regular classroom told her to be

quiet, as her slate and stylus was making a tapping noise. Jean's voice became softer as

she recalled the experience:

When we were in about the fifth grade, when supposedly our blindness skills had
been established, we were able to read Braille and write Braille and we could, we
had kind o f little blocks that we used at that point, we were sent out with sighted
kids in our grade, you know, nothing like mainstreaming now, and so I was put in
the fifth grade. That was where I started, and I went to Mrs. Streeter's class, and I
was taking problems down with my slate and stylus when she was writing them
on the board and saying them as she wrote, and she turned around and said,
"Who's making that noise?" and I said I was. "You cannot make that noise in this
classroom," and I got up and left crying and went back to the Braille department
and they didn't send me back to that class again.

While the above incident occurred more than 70 years ago, younger informants

demonstrated that problems with mainstreaming have persisted over time. Recently, in

the past school year, Beth's teacher forgot she was in his class, as illustrated in chapter 4.

However, unlike Jean, who seemed to be holding onto the hurt after more than 70 years,

Beth joked about the experience. When Beth's teacher remembered that she was in his

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class, he sent her out of the room to get the classroom materials put into Braille in the

Resource Room.

Maria attended the California School for the Blind from age 6 to 10, where she

learned print and then Braille. When she began attending her local public school in the

fourth grade, she received 90 percent of the written materials in Braille, but still she felt

excluded from certain activities in the regular classroom, as described in the following

passage:

I remember one time, they were doing like a spelling bee, so getting up.. I mean, I
guess I could have, who knows, my penmanship was illegible. I want to say it's
legible but you know, I think about how one's self esteem plays a role in how they
deal with a situation, cause I could say let me get up and write it on the board,
cause it probably still would have been legible enough to read, but being able to
play spelling bee on the board, cause we would get up and write the word on the
board, when obviously the teacher's up at the board and writing things down, but I
don't remember in grammar school asking what did you put, but I would not
always get the information.

While the above examples depict the problems that can occur with teachers who

fail to understand the needs of their blind and visually impaired students who use Braille,

the problem occurs even more often when children are struggling to read print. For

example, David started kindergarten in the early 1970s, right at the time when

mainstreaming was becoming popular and his mother insisted that he attend their local

public school. However, David question whether or not that was the right decision.

Because he had very poor eyesight and could barely read large print, he felt forgotten in

kindergarten when his teacher didn't know what to do with him. He recalled:

I came into a kindergarten class in the middle of the school year. The teacher
really didn't want to take any time to work with me. Too much work or
something, so I just kind of, I remember very clearly sitting off in a comer and
taking the little old Sam I Am books and plowing through them on my own, you
know, holding my face right up to the print, and, of course, back then, the print
was bigger in the kids' books so you could just manage it.

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Because blind children who were not using the most appropriate medium for

reading and writing sometimes struggle to participate in literacy activities, they often felt

embarrassed, which led to a sense of isolation and exclusion. While David said that his

teachers and classmates did not tease him, he still felt embarrassed for being different,

which influenced the way he participated in literacy activities in school. Because he

attended school at the start of the mainstreaming movement, the teachers in the regular

classroom did not know what to do with him, as mentioned above, and left a lot up to an

aid who would come to the classroom to help. David explained:

I'll always remember Mrs. Brown, this lovely, older lady who'd come and you'd
know they'd come to your classroom door. You know she was very nice and
sweet, but she was like 115 years old and it was always like the woman caused
extreme embarrassment. She would come and ask, "How are you getting along?
How are your classes? What do you need?" Things like that. Mostly the
solutions were large print and things like that, but it was just one of those things
like I would rather have a "kick me" sign on my back all day as opposed to having
that teacher show up because it was so embarrassing.

Many students who struggled to read print felt embarrassed at certain times during

their education, including August, Daniel, David, Jeffrey, and Simran. All described a

sense of isolation and exclusion. While students who read Braille were more confident in

their reading abilities, especially those who had been reading Braille since a very young

age, like Adelle, Emma, George, Gloria, Jean, and Joseph, a few who learned Braille later

felt embarrassed by having to use Braille for reading and writing. As illustrated in the

last chapter, the attitudes o f Sava's family members influenced the way she felt about

reading Braille. Similarly, Sava felt embarrassed by reading in front of teachers and

classmates at school. She had used large print until she was in the fifth grade, at which

time her VI teacher insisted she use Braille. Sava said, "One day [my VI teacher] looked

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at [the large print book] and she gave it to me and asked me to read it and I couldn't read

it, so she took it away, and from then on, she tried to give me stuff in Braille."

At first, Sava resisted using Braille, as she didn't want to be considered blind.

However, as time went on and she discovered that she was able to read a lot faster and a

lot better with Braille, she gave in. still she felt embarrassed because Braille contrasted

with the print she had read before. She explained:

in the Resource Room, they had a lot of Braille books, little books like The Baker
who Traveled Around the World, and I just read those books and that's how I
became a really good Braille reader, but taking those Braille materials into the
classroom, I'd feel very very self conscious. I'd feel uncomfortable so I'd read
only if I'd have to. I remember one time in the fifth grade, I had a Braille book in
front of me and my teacher asked me to read and there was this word. I remember
it. It was ancestor and I didn't know what it was. It was too big, so I was like, "I
don't know," and he says "Try." "But there's something wrong with the Braille,"
so I made it look like there was some mistake with the Braille, something wrong
with the Braille. The teacher doesn't read Braille so he doesn't know, so he rarely
asked me to read after that.

While the term Resource Room is used "for students who receive special

education and related services outside the regular classroom for at least 21 percent but not

more than 60 percent o f the school day"

(http://www.ed.gov/pubs/OSEP95Anlpt/chlc.html), many of the students talked about

the Resource Room, even when they spent less than 21 percent of their time there. Sava

spent an hour a day in the Resource Room, where she shared the equipment with 10 other

blind and visually impaired teenagers. She was one of three who used Braille. When she

wasn't reading books and articles for her classes, like "How It Feels to be Colored Me" by

Zora Neil Hurston, one of the essays that inspired her, Sava used the resource room to

"catch up on work or practice Braille or practice using the technology." However, she

felt that she should not be required to attend, as this required hour prevented her from

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taking elective courses. At one time, she wanted to go to the California School for the

Blind in Fremont, just so she could take elective courses, but her parents refused. She

explained:

Before I was starting high school, I was asking my parents if I could go to the
school for the blind because I have to go to the resource room at my school. At
my public school, at the regular school, I didn't get a chance to take an elective, so
I don't get to drama and dance or art or music. I just take the core classes, cause I
have to use one hour for the resource room, while the other students don't go to
the resource room, so if I went to the school for the blind, I'd get to take music
and art and I thought I would get the regular high school life, but my parents were
like, “No, you'll be fine,” and their opinion about the school for the blind is that
it's a place where parents send their blind students when they don't want them at
home, and my parents did not want to send me there.

Former high school students complained that they were unable to take elective

courses in their high schools for similar reasons, including Heather, Maria, and Simran.

However, Simran pushed her way out of the resource room and into the elective courses.

SIMRAN: I spent one semester I think in the resource room, or maybe one year in
the resource room, and that was ninth grade and I never went back to that resource
room again.
PRISCILLA: So like how much time?
SIMRAN: One period a day. The seventh period. It was an elective period, cause
I didn't want to give up choir and I didn't want to give up my foreign language and
I didn't want to give up any o f my academic curriculum, so that was the time, that
one period a day, and you know what I did in that resource room? I did my
homework so that when I would go home I could watch TV. That's what I did. I
didn't learn anything.

Most parents participate in IEP meetings for their blind and visually impaired

children, but, as mentioned in the last chapter, sometimes parents do not know the best

ways to help with literacy learning. This was the case with Simran's parents. Rather than

being excluded from individual activities, she felt as though she was excluded from an

education. She said:

My parents started asking for large print stuff I think when I got to fifth or sixth
grade. Fifth and sixth grade they started asking for large print stuff and asking

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teachers to make certain accommodations, and the first thing they would ask for
in school is that I could sit in front of the class and be close to the blackboard and
you know light, being in a well lit part of the classroom because they knew how
that affected my ability to take notes and so forth. In second grade, they asked,
and I think this is a classic example of what happens to children and how literacy
is actually robbed from us. You know how you have guide words and you have
to get the definition of like eight words in a dictionary? So my parents asked that
I only be given four words cause the print in the dictionary is really small and I
cannot see it fast enough like the other kids to be able to write the definition as
quickly as they can, so the homework assignment takes me like double or triple
the time, so therefore the reasonable accommodation for me was actually less
work and that is robbing a child of his or her literacy and that's just, you know,
looking back, this is what they asked for and you know I'm seven years old.

Several o f the informants commented on the lengths they had to go to in order to

pretend to participate in their classes, especially before more recent technology. Many

had to carry around heavy equipment and books to be able to read and write with their

sighted classmates. David carried a CCTV from classroom to classroom until finally the

school put his CCTV in the nurse's office. Whenever he had to read or write anything for

a class, he went to "his room" and often ended up lying on the cot and listening to a book

o f fiction on tape. Simran carried heavy large print books with an 18 point font from her

locker to her classes. Emma carried Braille books and a Braillewriter through the halls of

her schools in Ireland and the United States. While this labor enabled students to read

and write in their classes, most complained about this inconvenience. Even Anthony who

had many positive experiences in school disliked having to carry his big books. He said:

I was mainstreamed and I had a research teacher who would come in and check
on me and if I needed something, she would have my books enlarged, and I had to
carry them around and they were huge and I didn’t like them. I thought it was
really embarrassing. My math books and English books and social studies books
in seventh grade were these huge large books, like twice the size of legal pad
books and wide and bulky and like big stone tablets.

Most o f the time, as illustrated in the last section, the informants were taken out of

the regular classroom for Braille lessons. Those who used print struggled to read and

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often felt embarrassed because they read slowly or because they had to carry big books,

CCTVs, or Braille Writers through the halls of their schools in order to participate.

While many informants expressed positive thoughts about their experiences with their

one-on-one teachers, others felt as though attending the Resource Room hurt their

education, as the Resource Room requirements kept them from participating in elective

courses, as seen in the cases o f Sava and Simran. Similarly, some informants were

excluded from extra-curricular activities, as will be illustrated in the next section.

Extra-curricular and the Blind

Some educational researchers have found that the literacy experiences that go on

outside o f the classroom are just as important, if not more important, than those in the

classroom (Finders, 1997). Joseph participated in a school radio broadcast where he used

Braille to read announcements and commercials. Sava has been involved in several

activities, including a Braille club where she and another blind student taught Braille to

sighted students by playing Braille games, including Bingo and UNO.

As shown in the first section, Gloria learned Braille in kindergarten and became

excited about reading and writing with the encouragement of her teacher. Similarly, she

became excited about extra-curricular activities in high school and joined several. She

participated in show choir by brailling the song lyrics. She learned the Braille music

code and played the violin in the school orchestra. Also, she spent three years in speech

and debate. She said:

I did rhetorical interpretations. That was the one I started with, so I would take
someone else's speech and say it basically, so I would get, basically that's how I
started to leam how to use readers, a human reader, whether it be my speech
coach or someone else on the team to kind of go through some o f the speeches
that we had, you know, in our library and kind of go through the abstract and if I
liked it, I would then get it transcribed in Braille and then what I would do if I did

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like a speech, I would take glue dots. They're basically these round little really
small stickers with a dot of glue that either my mom or my Braille clerk or my VI
teacher would put a dot of glue on so it was tactile and then this is the way I
highlighted, because I had to cut and paste a speech down to 10 minutes, so if I
liked the introduction, I would put a glue dot at the beginning and then at the end
o f where I wanted to stop, memorizing that particular passage and then let's say
three pages later, I'd put another dot starting somewhere in the middle of the page
where I thought it was a good transition to use to this particular point and then put
another little glue dot at the end of the section, so I used that as my method of
highlighting speeches or what have you rather than rewriting something over and
over again.

Students with Braille skills tended to participate in extra curricular activities more

than those who did not use Braille. Simran argued that learning Braille would have

helped in her education, both inside and outside o f the classroom. She explained:

In high school, speech and debate was a huge problem because of the reading, so I
had to leam not to do team debate because I couldn't read those flash cards
quickly enough and we had to like label files and I had to have a partner find the
files and I knew what was in the files and I'm like, "The card we're looking for is
in this particular file. Find it," and it was really hard for a partner to work with
me because, you know, and the same with anything that I had to be really familiar
with the evidence. I am worried about that part of law school, or that part o f law,
practicing law, because there is a bit of that, like pulling the right card at the right
time,

Because August cannot read print very well and she cannot read Braille at all, she

has been denied opportunities to participate in extra-curricular activities. When she tried

out for the school play, the print of the script was too small for her to read. She

explained:

It was really hard at first because like when I was trying out, what they had me
read was like smaller than an ant, and I was squinting and I was messing up the
words and that really felt bad to me because that was my try out and by me
reading it in that way, they assumed that's how I was going to read the dialogue,
so ... I feel that my blindness has kept me down in that way too because like
when you go to things like to try out and stuff like that, they'll give you something
like smaller than an ant and they'll be like you have to read it and however you
read it or report it to them, they assume that's how it's going to be.

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Because o f the number of extra-curricular activities that exclude the blind, such as

many physical sports, it is important that blind students can participate in other activities.

However, most other activities involve reading and writing, from reading lyrics or

musical notation to participating in speech and debate or high school plays. As illustrated

in this section, the informants who knew Braille were more active in extra-curricular

literacy activities than those who did not. However, most blind children do not leam

Braille in the public schools as shown in Chapter 2. Before 1997, under IDEA, if a

parent wanted a child to leam Braille, the school was supposed to teach the child Braille.

Today, IDEA '97 requires that a child is taught Braille unless the IEP team determines

that Braille is not appropriate. However, as will be illustrated in the following section,

informants who attended school after 1997 did not leam Braille.

Problems With Print

In this section, I focus on two students —Daniel, a fourth-year college sophomore,

and August, a high school sophomore. Both are legally blind and have progressive eye

conditions that could lead to nearly total blindness. Both have one blind parent and more

than one blind sibling. Both attend public schools in the San Francisco Bay Area. In

both cases, the lack o f support for literacy in school has caused frustration in their

everyday lives.

Daniel

I took the hour-long Bart train from El Cerrito Plaza to Pleasanton, transferring

once along the way, and a cab to the house where Daniel has lived with his parents for

the last 24 years, a house on a cul-de-sac with no through traffic. As I entered the house,

feeling the carpet beneath my feet, I noticed the scent of air fresheners masking the odor

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of cats. Following Daniel into the living room, I sat on the couch and, except for the

grandmother clock chiming every 15 minutes, the house was quiet. Daniel sat in a chair

across from me, eager to tell his story.

Daniel grew up as the fifth of seven children in his family. His mother is blind, as

are two o f his siblings. However, unlike the three of them, Daniel was not taught Braille.

Even though Daniel and his older sister and younger brother took the "yellow bus" to the

same school in the Bay Area have an hour away from their home, his siblings read Braille

while Daniel struggled to read regular print and large print with magnifiers. Even when

his vision was decreasing, he was not taught Braille. While Daniel's mother had learned

Braille, she believed the members of his IEP team , the supposed experts, when they told

her that Daniel should use print rather than Braille as he had more sight than his visually

impaired siblings. Daniel said:

Well, my sister and my brother went to the same elementary school as I did and
they learned Braille. I mean, my sister has been tested at 500 words a minute in
Braille, and my brother has been tested at around the average which is around
100.. .he'd probably be around 150, which is a fast enough speed that you can
comprehend what you're reading and that changes your whole, you know,
education. And that's my brother and sister, and then me, you know, I have some
vision and they decided, well, let him use the vision. They told my parents that
they would be, she would be denying my sight if they taught me Braille, denying
him o f his sight. Kind o f a joke.

Often times at the beginning of a new school year, Daniel would not receive his

books for weeks, as they were being put into large print, and he could not participate in

reading events. Even when he had the books, he "felt miserable" when the teacher called

on him to read out loud. Holding the book up close to his face, he read more slowly than

his classmates. He remembered the emotions that came from these experiences.

I was always putting my nose up to the book cause I was near sighted. I could
only see a couple o f words at a time. I couldn't track very well cause I only have

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one eye, too, and that's difficult. They would make me read out loud, but I didn't
feel like I was part o f the class. I felt very outside of the group. Art, I remember.
I wasn't able to do that, and I was very angry. I remember being very very angry
in elementary school when I couldn't do something.

Daniel asserted that that his "whole education was damaged" because he was

taught to use print rather than Braille or both print and Braille. However, he didn't blame

his teacher but instead blamed the teacher education program that taught his teacher that

visually impaired children should use print rather than Braille. He explained:

I think my teacher jus didn't know any better. That's the way she was taught to
teach, and I was taught that I was visually impaired and that meant that I needed
to leam these kinds o f things.. .1 learned print and I lost sight later, and in fact
when I was in seventh grade failing classes because of not being able to see the
information that I was given, they did several psychological and IQ tests and they
did tons and tons o f tests because we were thinking of me going to the school for
the blind and at the very least they said that I was visual learner which also meant
that I should have been taught Braille when I was in elementary school, and that
was pretty profound for me when they told me that. So I mean that to me told me
that my whole education before seventh grade was basically worthless, cause I
learned how to read, write, and then write cursive, you know and those kinds of
things.

Daniel felt that he should have been taught a medium for reading and writing for

which he could make improvements, especially since he was continuing to lose sight. He

would never read or write as fast as his sighted peers. While Daniel said that he likes to

write today, using his computer with a screen-reading program, he described himself as

functionally illiterate, because he cannot read print or Braille efficiently. He blamed the

school system for his lack o f literacy in the following passage:

Even if I kept the vision that I had, I would have never have been able to be as
fast as a print reader a sighted 20/20 reader, and um I would have eventually
failed anyway, somehow, some way, with print.. .magnifiers, CCTVs, large print
books...When I started struggling, the VI teacher said, "Well, he's not trying hard
enough. He's not asking for enough help. He's not, you know, that kind of thing,
and it really wasn't my fault, but I felt terrible.

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Daniel's literacy experiences from his childhood have influenced his reading

today. While he finished high school almost six years ago and attended a rehabilitation

training center to leam some basic blindness skills, he still cannot read Braille very well.

Instead, he listens to books on tape or on the computer. While he enjoys writing on his

computer, including keeping an on-line journal, he doesn't read very often, except for the

books his community college teachers assign. He explained:

I've never really.. .1 didn't start out reading books and there would be some books
that I got really interested in when I was a kid, but because it was so pain staking,
I just associated reading with hell basically and so I never really learned what
kinds o f books there are, you know, what kind I like, what kind I prefer.. .My
hatred for reading print for a long time {discouraged me}. Just the fact that I
didn't read didn't give me enough opportunity to know what I liked discourage
me. It's a mental block from when I was a kid. I have to take it and re-evaluate
my paradigm of that and say, Hey reading's not so bad. I'm learning a lot. It takes
a lot for me to actually sit down and read a book, unless it's really interesting.

Since Daniel started scanning and listening to books for college courses for

school, he has related to some o f the authors he read in his African American English

course, especially Frederick Douglas. He began to realize the importance of literacy and

to see the ways he has been denied. He said:

{Literacy is} indescribable. It's so valuable. It's the most important thing that a
person can leam. I took African American history and the way they kept the
slaves and the way they kept slaves, and everybody knows this, but the way they
kept slaves was by not teaching them how to read and write. You're a slave if you
don't know how to read and write, a slave to the people who are around you that
know what's going on around you.

While Daniel's interest in reading has grown since his childhood, this interest

occurred about 20 years later than he would have liked. Although he had two visually

impaired siblings who were learning Braille in the public school system, his mother did

not push him to leam it, because, according to the teachers at his school, he had enough

sight to read print. Because he was unable to read large print very efficiently as a child,

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he gave up on the idea of enjoying the acts of reading and writing. Even when Daniel

started using books on tape or in an electronic format as an adult, his negative childhood

literacy practices made a lasting impression on his life.

Although Daniel views himself as "functionally illiterate," he considers himself a

writer. However, like reading and books, he only became interested in this out-of-school

literacy activity in the last few years. Since that time, he has kept a journal online, where

he includes a lot o f information about his emotions. While Daniel's interest in literacy

has been growing, the next example with August illustrates her lack o f interest in reading

and writing because of the experiences she has had in school.

August

I took Bart an hour south of El Cerrito to Fremont, California, which is in the

south bay close to San Jose. When I got off the train, I made my way to the cab stand.

Like many of the cab drivers in the Bay Area, this man spoke very little English. He

asked where I was going and I gave him the address and the directions that I had looked

up on mapquest.com before leaving my house. This man wouldn't believe I knew where

I was going and asked for the phone number o f the people I was going to visit. He would

not leave until he could speak to a sighted person about the drive. Little did he know that

the people I was going to see were blind. Reluctantly I called and talked to August's

mother about the directions. However, the cab driver insisted on talking to her himself.

Finally we took off and I sensed the direction we were going. At one point, I said

that he was to have turned left rather than right, but he wouldn't believe me. However, I

was right and I sensed him turning around and heading back the direction from which we

had come. Then he crossed the intersection where he had made the mistake. Finally we

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arrived and he told me the amount, which was much higher than it should have been.

While I was arguing with the cab driver, August's step-father came out to meet me. I

handed the cab driver the exact amount and went into the house, still upset from once

again being treated unequally because o f my blindness, something many blind people

deal with in their everyday lives, including in the public schools.

Like Daniel, August, a 16-year-old girl who described herself as part African-

American and part Cherokee Indian, grew up in the Bay Area and has been mainstreamed

since kindergarten. She lives with her mother, step-father, three younger sisters, and one

younger brother. Another child is on the way. Also, a family friend and her son live with

them. Several other family members are legally blind caused from the hereditary

condition of Aniridia, meaning without the iris, including her maternal great

grandmother, her maternal grandmother, her mother, a younger sister, and a younger

brother. As August and I sat on the couch and talked in the living room, the sounds of

her step-father, also legally blind, making dinner in the kitchen and the two-year-old

playing with a talking patty cake toy in the next room drifted in and out of our

conversation.

As a child, August wasn't read to and she didn't leam to read and write at home.

When she went to school, she found that the teachers were reluctant to teach her because

of her blindness. She said, "As a reader, I don't think I'm as good as I could be because I

didn't leam how to read or even start to read until I was in the fourth grade, cause all my

teachers were like, 'Oh well, she's Black, she's blind. You feel bad for her, just let her

pass,' and like that went on for a lot of the time until I got in the fourth grade."

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According to August, teachers sometimes pass their blind or visually impaired

students rather than pushing them to do the work and achieve their full potentials. In

comparing her own literacy education with that of her sighted nine-year-old sister, who is

in the third grade, August said that her sister is doing things that she never did in the third

grade, including reading books and writing short papers. Because August couldn't see the

board when she was in grade school, she missed out on a lot of things, including

directions for assignments and spelling of words. Finally in the fourth grade, August had

a teacher who believed in her and taught her to read, but, by that time, August felt as

though she was behind her classmates and couldn't catch up. She explained:

There was this teacher that was just like, "I'm not going to give up on you. You're
going to leam how to read. You're going to leam how to write. You're going to
do it, and if you don't do it, then I'm going to fail you," and it was a really good
experience and fourth and fifth I had her, so I had the experience of learning how
to read and write, but it was really hard, because like I would go into stores and I
would be like, "I can't read this," and all the other kids my age could read it.

In the seventh grade, August started learning Braille, but she only made it through

the letter D before giving up. No one pushed her to continue learning Braille. Instead,

she used large print, which wasn't always available. She said:

I was a little negative towards the fact that I couldn't {read} because everything's
in small print and they don't normally make books that you actually like in large
print and you have to special order if they don't have it, and I'm like I'm not going
to take the time to do that and I was like that's not fair and I didn't care and now
it's like, now that we have a CCTV, it's like I'm reading everything and I'm not
letting blindness keep me back from something I need and want to do.

While August stated that the CCTV could be the answer to her problems with

reading, the stories of other informants illustrate that she could be wrong. As mentioned

in the last chapter, only 3 of the 10 informants who could read print as children were

taught Braille. O f the remaining seven, six have progressive eye conditions, and four of

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those six cannot read print today, including David, Daniel, Jeffrey, and Simran. While

the CCTV may work for August now, individuals with aniridia often lose more sight over

time, as in the case of her great grandmother, grandmother, and mother.

Besides reading books, August mentioned other problems with accessing

materials, including reading the chalk board. She said:

I think [my problem with learning] was because of my vision because if I was one
of the other kids, I would be able to see what the teachers wrote on the boards.
The teacher's like, “We'll give it to you later,” and I would never get it, and they're
like, “Oh, don't worry about it."

August started classes at a new school a few weeks ago, as her family moved

from Oakland to Union City. She said the new school with an enrollment of almost four

thousand doesn't have the resources that her old school had. The only piece of equipment

available to her is a CCTV. Often times, she will get headaches from reading large print,

so she goes to use the CCTV in the Resource Room. However, she explained the

problem with this method. She said, "There's only one CCTV and there's three visually

impaired kids, so everyone's using it, so it's much harder now than it was [in my last

school], so I'm having to bare with it."

While August would like to check out school books on tape from a library for the

blind in order to prevent the struggles and headaches that come from using large print,

she said that isn't an option for her. She explained, "I had these tapes out for like a year,

but I didn't know that I still had them and I found a tape in my room and I recorded over

it and then later on I found out that that was the tape that I borrowed, so yeah they

wouldn't let me borrow any more."

Because most of the blind and visually impaired teens attend another high school,

August said the teachers don't know what to do with her. For example, she explained that

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she often could not see what the teacher was doing or see well enough to read the

textbook and felt as though the teacher and other kids did not understand. She said:

The teacher's like, "Do you want to read that in Spanish," and I'm like, "I can
barely speak Spanish. How am I supposed to read it?" She's like, "Do you want
to try it August?" and I was just like I shook my head and all the kids are like,
"Oh my gosh. She's getting away with it again." Students say that I get away
with everything and that's not the case. Like sometimes I wish that everyone
could be blind, like not everyone, but everyone that has ever done that. Everyone
see what it's like for one day, like from 12 to 12 to see what it's like to just be
blind and know how hard ... Like a lot of the homework I'm not doing and a lot
of the class work I'm not doing because I can't see i t ... One time I was reading
and like the words were like really big and like all of a sudden I couldn't see them.
They magically disappeared.

Like Daniel, August has felt frustrated at times throughout her education because

of her blindness. On the one hand, she had teachers who passed her rather than expecting

her to do the work. On the other hand, she had teachers who expected her to do the work

but failed to understand that they needed to accommodate for her disability. These

experiences have led to August's lack o f interest in reading and writing. Over the years,

she has viewed literacy as a horrible part of her life. However, in time, she may develop

an interest, just as Daniel did, but for the time being, she resents her teachers and lashes

out at her sighted classmates, wondering why "God's ganging up on [her]."

Summary

This chapter focused on what was going on around the students during their

literacy learning rather than on the physical literacy learning itself. The informants talked

about specific activities and the ways those activities influenced their thoughts of reading

and writing. In the previous section, the stories of Daniel and August revealed that their

struggles to read print resulted in negative attitudes about themselves as readers and

writers, as they did not believe they could compare with their sighted classmates. Daniel

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said he was functionally illiterate. August said she wasn't as good as her sighted peers.

After years and years of struggling to read print, years and years of not meeting the

expectations o f their teachers, it seems that both of the informants gave up at times during

their education. Instead o f wanting to leam through reading and writing, both avoided

these activities.

This chapter demonstrated the ways teachers can positively and negatively

influence the literacy experiences of blind and visually impaired children. Some totally

blind informants described positive experiences with their teachers, while others pointed

out times when they were excluded from literacy activities in the mainstream classrooms.

The informants who learned Braille, more than likely meaning they were using the

appropriate medium for reading and writing, discussed more positive than negative

school experiences. On the other hand, the informants who had some residual vision

were pushed to use print, which often resulted in frustration and resentment, not to

mention exclusion and isolation. Braille readers participated in extra-curricular activities,

while the print readers often became frustrated and quit.

As noted in the last chapter, 24 of the 30 informants expressed the importance of

learning Braille, even those who were not Braille readers, those who were not taught

Braille because they had enough sight to read large print as children but cannot read print

or Braille today. The Braille users possessed more confidence than the print users in their

abilities as readers and writers. While some informants felt as though they earned the

appropriate medium and others felt as though they lacked the skills for reading and

writing, most informants described the ways their literacy experiences influenced their

self esteem. Jean's teacher told her to be quiet as she typed on her Braille writer. Beth

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and David were forgotten by their teachers. Jeffrey faced ridicule from his teachers and

classmates as he struggled to read print. Sava felt embarrassed by having to use

alternative techniques for reading and writing in class. And then there were informants

like Bobbi and Dawn, who sat in class silently while their classmates learned to read and

write. Fortunately, both learned Braille later and have realized the joys that can come

from reading and writing. Dawn said, "I think being able to, or not being able to read and

write for that long, even though I didn't really get that I was missing something, once I

kind o f discovered all that is out there and all that one can do with Braille, it's like, that's

mine."

While this chapter and the last focused on the sponsors of literacy these

informants had during their childhoods, including family members and teachers, literacy

learning does not stop with childhood but instead occurs throughout a person's life

(Barton & Hamilton, 1998; Brandt, 2001). Sponsors of literacy are just as important for

blind adults as for blind children, as blind adults qualify for rehabilitation services,

including training and equipment for their future careers. If blind individuals have not

had encouraging sponsors by the time they reach adulthood, they may once again fall

between the cracks. Rehabilitation professionals become the main sponsors of literacy

for blind adults, which will be discussed in the next chapter.

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CHAPTER 7

REHABILITATION AND LITERACY:

TRAINING, EQUIPMENT, MENTORS?

I went to the training center, and if I didn't think badly of blindness before, that
utterly cemented it. I was around people who were breaking down in tears about
their blindness and the rehab counselor agreeing with that and telling how hard it
was, how bleak the options, how little the possibility o f work. Everything there
was bleak. There were no blind people in the office. It was all sort of hand
wringing sighted types, except the leader of the vision loss support group was
blind. It was horrible. I left that feeling a lot worse about blindness than I ever
did, and you know on the intake form, they asked you things like, “Oh would you
like a free Bible,” and I thought, “I'm not reading that damn Bible as a sighted
Jewish person and even more now that I'm blind. AM I going to pray for my
sight back? They said I could get a free fishing license, you know, all these
things. This was the solution to blindness. I could get a parking sticker. They
could help me with paratransit, you know, the whole free package, one after the
other, and that was it. That was rehab.

The federal government established rehabilitation services in 1973 in order to

help adults with mental or physical disabilities obtain employment and live more

independently through counseling, job training, and individualized services. According

to the mission statement online, "The California Department of Rehabilitation works in

partnership with consumers and other stakeholders to provide services and advocacy

resulting in employment, independent living, and equality for individuals with

disabilities" (http://www.rehabcahwnet.gov/). However, as in the above example,

sometimes the system fails. In 1993 at age 38 when Michael realized that he could no

longer use visual techniques for reading and writing, he wanted to learn alternative

nonvisual techniques, so he went to a center where he thought he could find help, but

instead he faced the cold reality that he could spend the rest of his life feeling sorry for

himself while listening to The Bible as he fished down by the bay. How could a fishing

license and a Bible help him go back to work as a journalist?

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Several barriers exist for blind and visually impaired people in finding

employment, including attitudes of employers and transportation (Crudden, Sansing, &

Butler, 2005). Capella-McDonnall (2005) found four main associations between

rehabilitation and employment outcomes for the blind and visually impaired: receiving a

receipt o f education, working since the onset of blindness, the reason for wanting a job,

and the relationship between the counselor and the client. Young (1996) argues that

rehabilitation providers must have positive attitudes about blindness in order to place

visually impaired persons in employment. Blind and visually impaired individuals need

access to print for almost any jobs, which includes the purchase o f adaptive equipment

and training on that equipment.

Similar to Brandt’s (2001) description o f sponsors of literacy, Barton and

Hamilton (1998) argue that "Literacy practices involve the social regulation of texts, that

is who has access to them and who can produce them. The resources people have access

to can be seen in terms of technical skills and equipment, as well as sites and supports

for learning" (Barton & Hamilton, 1998, p. 17). In the lives of blind and visually

impaired individuals, rehabilitation counselors and others working in the blindness field

may be the most significant sponsors of literacy for blind and visually impaired

individuals, even more than the parents and teachers in the previous two chapters,

especially if parents and/or teachers lowered their expectations. These professionals

often make the decisions as to whether or not clients will have access to the training and

the literacy tools they need to succeed in higher education, in jobs, and in life. But what

happens if individuals lose their sight as adults and don't know where to turn? And what

if they turn to rehab and find that the system doesn't work, as in the case of Michael?

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Will newly blinded clients know that they need good training and the appropriate

equipment to succeed?

In this chapter, I focus on rehabilitation services in the San Francisco Bay Area

and the ways those services have influenced literacy for the informants. In the first

section, I provide examples of the ways rehabilitation training can influence the futures of

blind and visually impaired individuals. Sam, Smoky, and Yoko, who lost their sight as

adults, illustrate their determination to learn alternative non-visual techniques for reading

and writing and describe the support of rehab. Others who grew up with visual

impairments describe the ways training centers have enhanced their literacy learning and

their lives. In the second section, I explore the literacy equipment that rehabilitation

services provide and how those tools can help or hinder literacy. Also, the section

provides examples o f times when the expenses of equipment did not equal the benefits.

Finally, the chapter concludes with a brief section on advice for rehabilitation

professionals from the informants who have used their services. They argue that

rehabilitation services not only need to provide training and equipment but that they also

need to incorporate mentorship programs.

Learning Alternative Literacy Skills

The San Francisco Bay Area has several independent living and training centers,

including the Rose Resnick Lighthouse for the Blind in San Francisco, the Lion's Center

for the Blind in Oakland, the Orientation Center for the Blind in Albany, the Independent

Living Center for the Visually Impaired in San Pablo, and the list goes on. O f these

centers, the Orientation Center for the Blind in Albany is the only one that provides

residential training for just blind individuals. O f the 30 informants, 12 attended

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residential training centers to learn blindness skills or alternative techniques for living.

Of those 12, 6 grew up with visual impairments and wanted to learn some of the skills

they had not learned before graduating from high school. Bobbi, bom in 1939, and

Emma, bom in 1984, went to centers to practice cane travel. Simaran, bom in 1979, and

Daniel, bom in 1982, wanted to learn computer skills and Braille, even though they

would never use Braille as a regular tool for reading and writing.

While Joseph, bom in 1986, said he learned Braille as a child and had some travel

skills, he wanted to learn how to live independently. At the time of this study, he

attended day classes at an independent living center in San Pablo and said he was

learning "how to manage my money, how to manage my time, care of clothing, care of

the body, care of hygiene, cooking, and how to use public transportation and how to use

computers to my advantage." He plans to go to college and would like to provide

computer training and technical support for blind and visually impaired computer users

Toward the end of this study, Sava graduated from high school and left the San

Francisco Bay Area to attend a National Federation of the Blind training center in Rustin,

Louisiana, one of the few training centers in the country that uses all nonvisual

techniques. All o f the students, no matter how much vision they have, wear sleep shades

from eight in the morning until five in the afternoon. In an email, Sava said that she was

taking classes in Braille, computer skills, cooking, cane travel, and woodworking, where

she used a power saw under sleep shades. She wrote that she was the fastest Braille

reader in her class of 15 and that the negative attitudes about blindness she held during

her childhood were disappearing. The following excerpt describes her enthusiasm:

One day a student named Larry had to make his meal for 40, which is the
graduation requirement. And yes, he made this huge meal complete with salad,

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com bread, a casserole, peach tea, and brownies, all under sleep shades. It was
delicious! I remember tasting the peach tea and loving it. I instinctively saw a
cup full o f peach-colored liquid. After my last class, I took off my sleep shades
and went to the kitchen. My last class is cane travel and my roommate's last class
is cooking. She's a bit slow in cleaning up, so I hang out around the kitchen
waiting for her and chatting with the other students. Well, I got another cup of
peach tea and was surprised to find that it wasn't a peach color. It was a dark tea
color, but it tasted so strongly of peaches that it had to look peachy. Haha. So
blindness is not darkness; there is still a strong feeling for light and colors!

Rehabilitation training centers can provide the skills of literacy to blind and

visually impaired individuals, but the confidence the rehabilitation employees can instill

in clients is equally, if not more, important, especially for those who lose their sight as

adults. O f the nine informants who lost their sight as adults, eight went through a period

o f depression, and four of those eight admitted to feeling suicidal most of the time during

the first year after going blind. They felt as though they had lost their identities, and most

o f these feelings were related to their work identities. O f the six who attended

rehabilitation training centers, employment appeared to be the primary reason why they

wanted to leam alternative techniques for reading and writing, as they knew they would

not be able to do most jobs without those skills. O f those six, three learned nonvisual

techniques for reading and writing within a year o f going blind. While one changed

careers, two went back to work in their previous occupations, including Sam and Smoky.

Sam, the son of a clerk and a school teacher, attended elementary school in Hong

Kong and high school at a private boarding school in England. He started to lose his

sight while working as a computer programmer in the San Francisco Bay Area. When he

started having problems seeing his computer monitor at work, he did not know what

services were available. Fortunately, a coworker who was legally blind told Sam about

the rehabilitation services that were available as described in the following passage:

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PRISCILLA: So did you seek out or did someone seek out you?
SAM: Yeah, I have a coworker who was visually impaired. He was with the
rehab program, got the equipment and everything and got training and everything,
so as soon as he find out I had eye problem, then you know he recommended that
I should at least get into the rehab and everything so I contacted the rehab because
the equipment for work. That was before I was losing my vision, and then so
when I find losing my vision more, then I went back to rehab and then I got
training.
PRISCILLA: So with training, in what ways did your attitudes about blindness
change?
SAM: When I first find out that I have eye problem and might become blind, I,
you know, scared, okay it's doing stuff one way all along and now I'm going to
lose my vision and I wouldn't be able to do anything anymore and all that, and
obviously that's not true. I went through a different training program and began
meeting other blind people and obviously you know if you want to do something,
you can do it. You know it may be different way to doing it than a sighted person,
but you can still do it.
PRISCILLA: Now did you stay at the training center or did you...
SAM: I actually stayed there. I came home for the weekend, but the week I was
there.
PRISCILLA: And what was the focus there?
SAM: Computer, Braille, and mobility.

With the help o f rehab services, Sam learned alternative ways for reading and

writing so that he could perform his job duties, including how to use Jaws with a

computer. As a computer programmer who works at a help desk at a bank in San

Francisco, he spends most of the weekdays on the computer. He said, "I spend a lot of

time on the computer, different stuff like scripting, running scripts, reading email."

However, he feels as though his blindness has kept him from getting better jobs with

better pay, and added, "I figure if I'm not blind, then I'd probably be making more money,

but hey, it doesn't matter. At least, you know, I'm independent. I'm doing what I'm

doing, so yeah. I wouldn't say I'm you know totally great, but at least I have job."

Like Sam, Smoky, age 73, grew up with sight. As a child, he lived on a walnut

farm in the Bay Area and remembers eating fresh vegetables and chicken or squab every

day. He had an eye condition that caused what he referred to as "flare-ups" and he would

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have blurred vision for a few weeks, but he wasn't concerned. When he was in high

school, a person from rehabilitation services came to see him and said the state would pay

for his college education. He already had been accepted at Berkeley and was glad to

know that the State was going to pay his tuition, but he didn't understand since he was

still sighted. He now believes his rehabilitation counselor knew more about his eye

condition than he did.

Smoky graduated from Berkeley with a degree in physics and immediately got a

job working at Livermore Laboratories. Part o f his job involved device testing, which

was actually atomic bomb testing, and he recalled seeing a lot of mushroom clouds,

which he always tells people had nothing to do with his blindness. During that time, he

would have temporary "flare-ups" and his vision would become blurry, but it would

return to normal after a couple o f days. Then in 1960 while he was attending the Rome

Olympics and touring Europe, his sight started to decrease. While cruising down the

Rhine River, his friends pointed out the details of the castles in the hills, details he

realized he couldn't see. Smoky explained:

I had been losing my sight slowly. I'd been covering up and having technicians
that were working for me—I was an electrical engineer, an electronics engineer-
read diagrams to me, read the things that I couldn't read. It was getting to where I
couldn't read, so I was pretty well covering up, but eventually overnight I went to
bed essentially sighted and woke up blind.

After spending some time in the hospital and after sitting around the house feeling

sorry for himself, Smoky decided to attend the Orientation Center for the Blind in

Albany, California, with the encouragement from a rehabilitation counselor. Smoky

wanted to go back to work, but he knew he had to leam the skills to do so. At the

training center, rather than taking the four required courses of home-ec, woodworking,

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cane travel, and Braille, Smoky doubled up in cane travel and Braille, as those were the

skills that he felt he would need to go back to work, even though most training centers

today insist that newly blinded individuals take the entire curriculum, as courses like

cooking and woodworking help individuals gain confidence as seen in the case with

Sava. Smoky said, "I do remember that it was a real plateau when I could get to the end

o f a sentence and remember what the first part of it said, and I'm sure that anybody who

learned Braille as an adult probably remembers that same sort of thing."

Because he wanted to do the type o f work he had been doing before, Smoky was

determined to leam the Nemeth code, which is the Braille code for math. However, there

were some problems, which Smoky described:

Now the teacher, the Braille teacher I had, was not familiar with the Nemeth code,
but the best book we could get was in Braille, and my Braille wasn't good enough
to read the Braille, so she read the Braille to me and I took down the Nemeth
code. She didn't understand a thing of what she was reading cause she didn't
know Nemeth code and could have cared less about it, but that worked out fine.
She read the book to me and I made notes on what I needed. I did use Nemeth
code a lot when I went back to work. That helped me get into the mathematical
analyses things that I mentioned.

After five months, Smoky called the lab and told them he was ready to come back

to work, but the job had changed. He explained:

They had a job for me to essentially work on the telephone. They figured well a
blind person could work on the telephone, so I was very fortunate that some of my
colleagues went to bat for me and told my department head. They'd said, "You
know Smoky lost his sight but he didn't lose his mind. He's still a good engineer,"
and he agreed to that.

Both Smoky and Sam said that Braille was important for going back to work and

that they were glad they learned this literacy skill in their residential training. Even

though Sam did not use Braille in his job to the extent that Smoky used it, they both

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agreed that Braille was necessary for them to go back to work as illustrated in the

following quotes:

SAM: Must leam Braille in the early stage of rehab. The earlier you leam Braille,
the more you use it and the easier it becomes, so even if they still have some
sight, definitely leam the Braille.

SMOKY: I'm still saying that to rehab counselors, and it's amazing. There a lot
that don't think Braille is that important, even some of the blind ones. I don't see
how they can do their jobs without learning Braille. They seem to think they can,
but I don't think they do it very well. I think that the statistics that of the 30
percent o f blind people that are employed, what is it something like 85 to 90
percent o f them use Braille. O f the 70 percent that aren't employed, maybe 10
percent o f those use Braille, so that says to me if you want to go to work, you
better know your Braille.

O f the 12 employed informants, 10 learned Braille but only two of those 10 use

Braille for their jobs on a regular basis, including Gloria and Heather. While a few

occasionally mark things with Braille, none o f the others read entire documents using

Braille, which in some ways raises questions over the national statistic that 85 to 90

percent o f the employed blind use Braille. Could it be that the people who have learned

Braille and have all the tools they'll need to succeed, even if they don't use those tools,

have more confidence? Either way, most of the informants understand the connection

and believe that Braille is necessary for employment.

While Sam and Smoky were able to go back to the careers they had before losing

their sight, jobs they enjoyed, many people who go blind do not go back to work. Others

leam the skills to start new careers as they cannot imagine how they would perform their

previous jobs without their sight. Many people who lose their sight become involved in

services for the blind and visually impaired, partly for reasons of convenience. For

example, when Yoko lost her sight and started thinking about going back to work, she

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thought it would be easier to work in a blindness-related field so that people would

understand. She explained:

That's the reason I decided to go into the blind field, cause I didn't want to fight
over the things I need. You know, if I work in a mainstream company, those were
the prospect I was thinking about, but then I'm like you know what? I want to
work in the field where people understand what I need, so I don't have to stress
out things that I need to have, cause I hear some crazy stories, you know, like you
cannot take the guide dog to go there, so I'm going to work in a place where they
understand what I need, so I really focused on this field.

Bom in Japan in 1971, Yoko moved to the United States to attend college in

1990. After studying piano performance at the university of Illinois, she decided to move

to the San Francisco Bay Area with some friends. She continued her education and

received a master's degree in piano performance from the Conservatory o f Music School.

At the highpoint of her career as a concert pianist, she started losing her sight. While

driving home after night concerts, she noticed that she couldn't see the dividing lines on

the road, so she replaced the car headlights. A few weeks later, she noticed black spots

floating around in her eyes, so she got new contact lenses. Finally one night while

attending the opera in San Francisco, she realized she could not read the monitors with

the translations. She described the process of losing her sight as well as her career:

I couldn't believe I was going blind and I said oh my career is doing really well,
you know, and then I just have to think about not be able to read music, not able
to see things, so I had a really hard time dealing with my emotional issue. I
couldn't believe that I was actually losing it, right, and then so if I magnify that
music score or letters, I could still read it using really bright lights, so I was really
hopeful but then in the same year I just totally lost it and around November, I still
remember giving the last concert that I did it with some of the players, I couldn't
read music no more. I'm like, "I can't do this, so I really have to give it up."

Like a few others who lost their sight as adults, Yoko didn't know what options

were available for her. Because the number one fear among one-third of the population is

blindness, the others being AIDS and cancer, people who are losing sight seem less likely

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to search for resources themselves, as they refuse to face the situation. Plus, once

individuals lose sight, they cannot see to find the resources easily. This was the case with

Yoko. Nobody, not even the eye doctors, told her there were places where she could get

help. Finally, through a friend, she met a blind man who told her about the Rose Resnick

Lighthouse for the Blind in San Francisco. When she called, she learned about another

center in San Raphael where she lived. Yoko said, "Okay, so I call San Raphael store

and they ask me where I live and they said, 'Oh, we are just two blocks away from your

house.' I didn't even know it was there."

Once Yoko made connections with the Lighthouse, she took classes in Braille,

computers, and orientation and mobility. However, unlike Sam and Smoky, Yoko relied

primarily on audio reading and thought the transition from reading print to listening to a

synthesized voice on the computer was very difficult. She found that this change

negatively impacted her spelling and wishes that the Lighthouse would have pushed her

to work on Braille more.

Because Yoko did not believe she could go back to music, she looked for a job

teaching computer skills to blind and visually impaired individuals at the suggestion of

her rehabilitation counselor. Because English is her second language, Yoko is glad that

the school system in Japan taught her proper English grammar and punctuation, as she

believes it would have been hard to leam English and alternative techniques for reading

and writing simultaneously, as she is finding with her clients. She said, "Some blind

people even now, they come to take computer, but I'm pretty sure that they're not going to

be able to use computer at all. They're just not capable or they just not ready for it.

Yeah, there just a lot o f issues."

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Unlike Smoky and Sam, Yoko chose a new career, leaving her music behind.

Like them, she received training within a year of losing her sight and found a job right

away. These three situations seem to be the exception, though. As mentioned earlier,

many people who go blind never go back to work. Others want to go back to work but

cannot get jobs for various reasons. Still others continue to work with visual alternative

techniques for reading and writing, as will be illustrated in the next section.

Literacy Equipment

O f the 30 informants, 23 have received equipment for reading and writing from

rehabilitation services for the blind and visually impaired in the San Francisco Bay Area.

Over the years, rehabilitation services have purchased thousands upon thousands of

dollars worth o f equipment for these informants with the idea that the federal government

would get the money back in taxes once the clients went to work. These informants have

received both visual and/or nonvisual equipment, everything from CCTVs to hand-held

magnifiers, from computers with Braille embossers to slates and styluses. However, one

must ask who makes the decisions on which equipment to buy for the clients. What if

clients have progressive eye conditions and are expected to lose most or all o f their sight?

Because the unemployment rate for the blind is so high, it is important that

rehabilitation counselors and other professionals know the needs of their clients. O f the

12 employed blind in this study, nine work in blindness and/or disability occupations,

two work as attorneys, one works as a computer programmer, one works as a

homemaker, and three are unemployed. (For the record, of the four people who worked

while they were blind and are now retired, one was a medical transcriptionist, one was a

chemical engineer, one was an ESL teacher, and one was a Braille teacher.) All 12 of the

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informants who currently work outside of the home said that the majority of the work at

their jobs involves writing and reading, which corresponds with the ideas of Brandt

(2001), who found that the majority of jobs today focus on reading and writing as

fundamental literacy skills. As a disability rights lawyer, Abdul said, “That’s pretty

much my whole job.” For this reason, it is important that rehabilitation clients receive

and are trained on the equipment that will work best for them over the long term, once

they are employed.

As illustrated in the last two chapters, many children who are bom with visual

impairments have progressive eye conditions which could lead to total blindness. David,

Anthony, Jeffrey, Daniel, and Simran read using print as children. Rather than

encouraging them to leam Braille, their parents and teachers pushed them to use print.

Similarly, many rehabilitation counselors provide visual equipment for their clients, even

when they know their clients cannot use the equipment efficiently and may not be able to

use it for very long. For example, when Marcus began to lose his sight from diabetic

retinopathy, his rehabilitation counselor provided a hand-held electric magnifier and he

straggled to use print. He did not want to be viewed as blind, as he described in the

following passage:

MARCUS: When I first lost my sight, I did not know what to think because 1 was
in denial. My attitude was I'm not blind. I am a person who had vision. I didn't
use a cane when I lost my vision. I tried to look normal, so I looked to those
people who were normal versus the people who were not, so when I first lost my
sight, I guess the attitude was I'm not blind. Those people are different.
PRISCILLA: Different in what way?
MARCUS: Different meaning they are blind. They can't see. They can't do very
much because o f their lack of vision and at the time I had a lot more vision. I was
trying to do the things I wanted to do, but when I started writing, I was doing my
math and I was trying to do it visually. God, what a mess.
PRISCILLA: This was college courses?

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MARCUS: Yeah. You have to keep everything quite organized. You do your
math, you have to keep your numbers under each other, make sure the right digits
are underneath the right digit and that was a mess and I just threw my hands up in
the air most o f the time.

While Marcus resisted being labeled as blind and continued to use magnification

tools provided by rehabilitation services, others were provided with equipment that

proved to be a waste of money. For example, Simran received a CCTV from her

rehabilitation counselor, but she used it very infrequently as described below:

SIMRAN: I have a CCTV, which has turned into a cable TV. (laughs)
PRISCILLA: Is that even possible?
SIMRAN: It's possible. With the right cables, then it's all possible. I mean why
give it away? You know, it's.. .1 need a TV and...
PRISCILLA: So you can actually watch TV on it?
SIMRAN: Yeah, I watch my Indian soaps on my CCTV. Isn't that funny?
PRISCILLA: Do you use it for reading at all?
SIMRAN: I have used my CCTV less than five times in the last three years.

Taking the average cost o f the CCTV, which would have been at least $1200

when the unit was purchased, and dividing that by the number of times the person used

the CCTV, which was five, the average costs for using this piece o f equipment was at

least $240. Was this a good use of rehabilitation funds? Probably not, but it is better

than the alternative where clients are denied services.

There seems to be a lack of consistency in rehabilitation services in the Bay Area.

While in some cases blind and visually impaired clients received an abundance of

accessible equipment for reading and writing, the opposite occurred as well, as in the case

of David. David's rehabilitation counselor told him that rehab wouldn't pay for his

schooling and accessible equipment unless he agreed to attend one of the local training

centers. David had received training in high school and didn't think additional training

was necessary. Plus, he knew people who had graduated from training centers in the San

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Francisco Bay Area and believed that his skills were much better than theirs. When he

told his rehab counselor that he would not go for training, the counselor denied all of his

funding. David took out thousands of dollars of student loans, not only for tuition but

also for screen reading programs, scanning programs, and other accessible devices.

Today at age 38, after several years of unemployment and trying to survive on a monthly

check from SSI (Supplemental Security Income), he now has a job and makes monthly

payments to repay those student loans.

In Heather's case, California rehab paid for school tuition and equipment, but

when she finally got a job in a law office after my initial interview with her and needed

equipment to perform the job, rehab backed down, arguing that the employer should flip

the bill for all the equipment. Heather went to the employer and they said they could help

but that they wouldn't be able to provide the equipment for a few months, as they would

have to go through several channels to get it. When Heather went back to the rehab

counselor, he said that a letter needed to be written enumerating the reasons why the

equipment was necessary to perform the job duties. The important thing was that the

client start working. While Heather wrote the letter to the rehabilitation counselor,

stating the reasons why the equipment was necessary to perform in the new job, she made

sure that she sent a carbon copy to her counselor's direct supervisor and the matter was

resolved in a few days. Luckily someone in rehab understood the importance of getting

blind clients into jobs and refused to argue over a few thousand dollars of equipment that

would enable Heather to access the written materials and start working right away.

Most o f the informants attended college or plan to attend college. While I did not

make an effort to seek out informants who did not attend college, I believe that more than

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an average number of blind and visually impaired individuals attend college because of

the lack o f jobs available to them. Many manual labor jobs are not open to the blind, as

most involve reading labels on boxes, coding by color, driving vehicles, and the like. For

this reason, rehabilitation professionals push their clients into attending college, even if

their clients do not want to go to school. Other times rehabilitation counselors start

working with clients and buying equipment before those clients are ready to go back to

work. According to Marcus, who works in rehabilitation services today, the counselors

want quick closures. He said, "I see a lot o f rehab counselors, not, well, I see a few, that

want to close, have a quick, it's called a 26, a quick 26, and get the clients in and out

within a year, and have a successful closure and get a brownie point for successful

closure."

O f course, quick closures often fail if clients aren't ready to go back to school or

work just because rehab purchased some equipment, as in the case of Claire. She said:

Years ago when my son was three years old, I had a counselor, I had the best
counselor. I was just not ready. I failed him because I really thought I was ready
but I wasn't. [My son] was too young. He was in preschool and I was ready to go
back to school and I opened my case and I didn't do anything that I said I was
going to do. I did a few things, but I had the best counselor. He was so good to
me. I mean, he would give me any equipment I wanted, but I feel like I failed
him, you know, cause I wasn't ready.

Of all the informants, Michael more than any represents the ways that

rehabilitation services could have used government dollars more practically.

Rehabilitation services provided Michael with thousands of dollars of equipment that

encouraged the use o f his sight for reading and writing, even though he had a progressive

eye condition. In some ways, it may be easier for those who go blind suddenly to adjust

to using alternative techniques for reading and writing than for those whose sight

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deteriorates over several years, as seen with a few of the informants in the last two

chapters. Because print is considered the normal medium for reading and writing, many

blind people, children and adults alike, resist learning alternative techniques. Michael is

one such adult.

In 1955, Michael was bom in southern California. He learned to read and write

print from his parents and in school. He had Stevens Johnson at age 12, but he was able

to live a "normal life" through high school. Like most of his peers, he received his

driver's license at age 16. He was not considered legally blind until he was a sophomore

in college. He said, "It was a step step step step thing, from 100, 200, 300, 400, until now

I have essentially light perception." (In the previous statement, the numbers refer to the

amount of vision loss. Perfect eyesight measures 20/20 and legal blindness measures

20/200.) During the deterioration of Michael's vision, rehabilitation services provided

several alternative techniques for reading and writing, mostly optical. He started out with

magnifying glasses and glasses that magnified, with "the book about an inch away from

[his] nose." In 1974 when he was a sophomore at Berkeley, he received a CCTV from

rehab, one o f the very first in production, the Apollo laser. He explained:

I got it and it came in two giant packing cases when I was up in Berkeley and I
was really in love with the thang, but I didn't use it much except for one thing. I
wanted to leam Hebrew and for that I had to leam a very methodical way of
punctuation and in Hebrew there are no vowels, so there's a whole set of dots and
dashes under consonants that you have using the Hebrew script, and there was just
no way to do it other than, I thought, unless I saw it, so I used that. In fact, I went
to Israel in 1975 and I actually shipped the CCTV there thinking that I would use
it for my language studies, and it got there but I was too embarrassed to use it, so I
never used it. I just learned spoken Hebrew but I didn't leam the written Hebrew.

The next optical alternative device rehabilitation services provided for Michael

was a spectacle mounted telescope, which Michael described as "a two-inch barrel stuck

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in one side o f a pair o f glasses that looked like they came from Walt Disney in the

1950s." He added that rehab bought the device for around $1000. The only nonvisual

device that rehabilitation services purchased for Michael was a tape player with

compressed speech, which then sold for about $1000, according to Michael. He said,

"You could turn up the speed and lower the pitch and that was beautiful. I used that

throughout and I recorded many of my classes and I would buy cassettes by the dozens

and record them and then listen to the recordings and take notes in large print. I could

still read large print with magnification, and that's how I got through college."

Michael graduated from Berkeley with a double major in history and journalism.

In his first job at the CBS television station in San Francisco, Michael used magnifying

glasses and his CCTV to do much of the work. At the end of each day, there "was a

smudge o f ink on [his] nose." After that, he went to work as a freelance writer, focusing

on science, writing articles for places like Discovery Magazine. In 1984, he started using

a computer and could change the contrast, and "all of the sudden [he] could see words

again." He bought monitor arms, so that he could swing the monitor out away from the

desk and push it up against his face, and he bought bigger and bigger monitors, but his

struggles to read the screen resulted in backaches and headaches on a daily basis. Finally

in 1991, he realized that he had exhausted all his optical options. He described the event

in the following passage:

MICHAEL: I was reading PC magazine and I read about these giant display
monitors that they used for airports and corporate training's and at that time these
things were phenomenal. They were three feet wide and I took a list of the
companies that made them and I wrote a form letter to each company and I said
that I'm a writer who has to use a screen all day long and I can't possibly afford a
display monitor but maybe you have one that you can't sell or is banged up or
something and maybe I could buy it from you for a reduced rate, and so Barco in
Atlanta wrote me back and they said, well as a matter of fact, we make 24 pre

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production and they said they made these two dozen pre production models in
white and our sales models are black so would white be okay and I said yes and
they sent it to me fed ex. I still remember that. Getting that thing from Georgia to
my house cost them $200 bucks and the monitor was selling for almost $6000.
PRISCILLA: So how much did they charge you?
MICHAEL: Nothing. They gave it to me.
PRISCILLA: But did you pay the shipping?
MICHAEL: No.
PRISCILLA: No?
MICHAEL: No, they just said would fed ex be okay and I said yes and that was
the last thing I heard. The next thing, it arrived and I thought that was great and it
was bigger than my desk. It weighed a couple hundred pounds and so literally it
was a 36 inch monitor and it had all kinds of bells and whistles and switches on it
and it turns out that it was just too big cause it was so big that I couldn't take in
the full screen at that angle and with using magnification. It finally was the
absolute demonstration to me that there was no further I could go with
magnification, that it was just. I had the means and the cleverness to acquire the
latest, biggest grandest gadgets and couple them with optical stuff and position it
properly and still I couldn't do it anymore.

As stated before, the main function of rehabilitation services is to provide training

and/or equipment so persons with disabilities can go back to work and pay taxes into the

system. However, when Michael realized that he needed help from the Department of

Rehabilitation Services in California, they offered him a fishing license, a Bible, and a

parking pass. Finally, after receiving some magazines on tape, including the Braille

Monitor from the National Federation of the Blind, he learned o f a training center in

California that was not associated with the state agency, one o f the four National

Federation of the Blind training centers in the country at that time. Michael described the

literacy tools he learned to use:

I learned so many things about Braille from my first Braille teacher. They told
me she could read Braille through a bed sheet, and I said, "Give me a break," and
she proved it, and I saw the amount of confidence that was there, so I continued
with that and that was the first time that I really had speech on the computer, the
old echo speech program and I used that and I used ASAP. You know, these
were the DOS days, and then finally Vocal-eyes. I learned how to use an
embosser, a Perkins, all that stuff.

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As already mentioned, electronic literacy tools for the blind can be very

expensive. While some of the informants could use the equipment, most cannot afford it

without financial assistance. For example, Maria, a Mexican American woman who

works as a home-maker with four children under the age of six, must buy her own

equipment, but she doesn't. She said:

Well, since I'm a stay at home mom right now, you know, and I can’t really call
rehab and go, "Hey, can I have... ?" I have what I have. Now I'm just like, "What
am I going to buy this for?" We could buy shoes and kid things, you know, so at
this point, buying equipment for me would be a luxury.. .If I didn't have kids, I'd
have it all.

In addition to many homemakers not qualifying for equipment, thousands of

seniors are left without the means to read and write. Macular degeneration affects 1 in

every 4 persons over the age of 60, and that number increases with age. Two-thirds of

people over 90 years old have macular degeneration. Currently, macular degeneration is

the primary cause of blindness among the senior population, but many of these

individuals do not qualify for services. A program for seniors exists, but many seniors

are not getting services from rehabilitation programs. Rather than providing blindness

training for seniors so they can have quality of life and some independence, the

government spends billions o f dollars a year on medical treatments due to falls, hip

fractures, and depression, not to mention the cost of placing visually impaired seniors in

nursing homes years before they really need to go.

Jonathan, a 93-year-old man who lost his sight from macular degeneration, a

former psychologist who has been a strong supporter o f disability and the arts since the

1960s, owns a computer and would like to communicate through email with his son, who

lives in the Dominican Republic, but the center he attends for blindness support has not

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purchased or taught him how to use a screen reading program, even though they

promised they would, as illustrated in the following dialogue:

JONATHAN: Recently I mentioned the interest I have in doing computer work,


especially in Email, and one of the staff is checking it out for me.
PRISCILLA: That's good. That way you could read and write your own emails. I
assume there's a specific program for seniors?
JONATHAN: Well, there are programs and I know that people have the incentive
to do a little o f that and they have computers there and they have the staff too, so
they're doing something gradual, but I haven't really gotten much help.
PRISCILLA: Now I assume you don't have enough sight to read large print?
JONATHAN: No.
PRISCILLA: So what would you want to do with the computer?
JONATHAN: My son is very much into the Internet and communication on
computers, so I know how beneficial it is. He's constantly living with his
computer actually.
PRISCILLA: Right, and so if you had a program, you could read his email.
JONATHAN: Yes, I'm sure there are ways and means that I could be helped, but
it's not easy to rally the support.

This was my first meeting with Jonathan. In a subsequent meeting a couple of

months later, I learned that the center still had not started working with him on the

computer. Of all the cases, this one bothered me a lot. Here was a man who had worked

all of his life on trying to better the lives of persons with disabilities, giving of his time

and money, and yet the staff at the institution has not provided the money for the screen

reading program or the time to train this individual so that he can communicate with his

son, his only child, the only family left in his life. Rather than providing equipment and

training, they provided Jonathan with a paratransit card so that he could get back and

forth to the support meetings at the center, where he and other blind and visually

impaired seniors discuss the ways their lives have changed for the worse. While

Jonathan is not o f working age, doesn't he deserve to be provided with some training and

equipment so that he can communicate with others and have a little quality of life in the

last years of his life?

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As illustrated in this section, many blind adults like David, Maria, and Jonathan

slip through the cracks of the rehabilitation system for various reasons. Still for many,

rehabilitation programs have provided equipment for many o f the informants in the San

Francisco Bay Area and these literacy tools have been very important for success in

school and at work for some. For others, the appropriate equipment for reading and

writing was not provided and it took a long time for the informants to get back to work,

as in the cases o f Marcus and Michael. More than likely Michael would have benefited

from training earlier on in his education or career. Rather than being supplied with

almost all visual techniques, he would have had an abundance o f tools from which to

choose. However, even when good training and equipment were provided, many o f the

informants felt as though they needed one more component in their rehabilitation

experience, which will be described in the following section.

Mentoring Minds of the Blind and Visually Impaired

Barton and Hamilton (1998) discuss the networking of friends and family to

enhance literacy; however, many times this networking is not possible for blind and

visually impaired individuals, as their friends and family might not know anything about

literacy tools for the blind. While getting appropriate training and/or equipment for blind

and visually impaired individuals is very important, the main word and/or idea that came

up during many of the rehabilitation discussions was mentors, specifically blind mentors,

and the need for rehabilitation services to provide them for blind and visually impaired

clients. Of the 30 informants, 10 stressed the importance of rehabilitation counselors

finding blind and visually impaired mentors for their clients. The general consensus was

that rehab services can provide the literacy equipment and training, but that the

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161

equipment and training cannot provide the confidence that comes from connections with

positive and successful blind role models. The following passages illustrate this view:

JEAN: Try hard to find a group that they can be in with other people to share their
experiences because I think that newly blinded adults are so frightened that the
most important thing they can gain is some confidence and talking to other people
who are having the same experiences.

ANTHONY: I think people young and old, newly blind or who have always been
blind, they don't need to be emerged in the blind community or the consumer
group community, but they do need to be exposed to good role models, whoever
that is, good role models who are primarily blind and low vision, not just good
sighted people. I think it's very imperative that people are provided with tools to
read and access and communicate, so they need the tools, but first they need
successful role models.

MICHAEL: The real function of rehab should be the creation of mentorship


circles. Rehab should be a catalyst to bring people together so that their genius
can flow and not the old model of fixing, as if they had a broken leg. That model
is broken. What needs to happen is have counselors as facilitators of networks of
connecting people ... The training showed me what was possible, but what lead
me from that to what I consider to be the computer user I am now, was this whole
peer mentorship. I met a handful of blind people in the area who were extremely
proficient with the computer and what really made a difference for me and for
every actualized blind person is finding those mentors who have nothing to do
with the rehab system and people you can call at 11 at night because you forgot a
key combination and leam from them, not just a key combination or getting out of
a jam, but when you see a blind person who's adept at this, confident in doing
things, it's a beautiful thing to be part of, but it's unappreciated by the
professionals. I think for me, I would not be where I am today without fewer than
half a dozen key blind people who don't have any degrees in access technology
and don't have jobs in rehab but have made all the difference.

Other informants brought up the idea o f mentoring programs sponsored by

rehabilitation services. They discussed their thoughts on the ways rehabilitation could

work in the lives of the blind rather on the way it is working or not working now. The

younger informants especially stressed the idea that they would like to have older blind

mentors who knew more about ways to succeed in college, in jobs, and in life.

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162

Mentoring combined with training and equipment could make a huge difference in the

lives of blind and visually impaired individuals.

Summary

In looking back at Michael's initial meeting at a training center in 1993, the place

that offered him a fishing license, a parking permit, and a copy o f The Bible, one must

ask what would have happened if he had received blindness training before going to

Berkeley, before spending years and years and years struggling to read print in school

and at his jobs. Fortunately, Michael learned of the National Federation of the Blind

training center, where he learned Braille, as well as how to use equipment, including a

Braille embosser, a Perkins Brailler, and speech programs for the computer. Through his

training, he met several confident blind people who provided mentorship and gave him

the confidence to go back to work as a journalist. He said:

It was time to live my life again and I went back to my writing career, this time
using speech and Braille. This was really a vision. I mean, instead of those
headaches and sort o f the feeling o f backaches, I could lean back in my chair and
type or I could even, and that's what I did. I got an extension cable and I had a
couch in my office, so I was able to lean back on the couch and write, which was
the best, and so I started doing what I had been doing before but this time with
much ease.

O f course, Michael's story is just one o f many. The informants in this study had

very different experiences with rehabilitation services in the Bay Area. Some attended

training centers in California, while others pushed rehabilitation services for them to

attend National Federation o f the Blind centers in other states. Some learned of the

training centers from their rehabilitation counselors, while others learned about

rehabilitation services from other people, including friends and co-workers. Sam found

out about rehabilitation services from a co-worker, and Yoko learned about the

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163

Lighthouse from a friend o f a friend. However, all of the informants who attended

training centers learned alternative techniques for reading and writing.

In the cases of Sam, Smoky, and Yoko, rehabilitation services provided training,

which focused on nonvisual methods for reading and writing. As illustrated earlier, all

three of these informants dealt with depression and questioned whether or not they could

perform the jobs they had done before. Rather than struggling to use print for years,

these individuals learned nonvisual techniques and went back to work within a year.

Their counselors encouraged Braille and screen reading programs which, in the long run,

was probably more cost efficient.

While rehabilitation services have provided thousands of dollars of equipment to

these informants, it appears as though the money could have been spent more wisely at

times. Like with parents and teachers pushing print on blind and visually impaired

children as seen in the previous chapters, many rehabilitation counselors provided visual

solutions for reading and writing, which often hindered rather than helped literacy. The

case of Michael revealed that rehabilitation counselors need to be more aware of their

clients’ needs. Rather than throwing more and more money into visual equipment,

counselors should think in the long term.

Finally, several of the informants stated that rehabilitation services need to

provide more than training and equipment, arguing that mentorship is perhaps the most

important component for blind and visually impaired people to succeed in school, in jobs,

and in life. As Michael stated, those mentors that he could call at 11 at night made the

biggest difference in his life, people who understood his frustrations as well as his

excitement in figuring out answers to blindness-related problems. While Michael

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164

eventually found the help he needed through rehabilitation services provided by the

National Federation of the Blind and positive blind mentors, many blind and visually

impaired people do not know where to turn for help. In many countries besides the

United States, services for persons with disabilities do not exist. So what happens to

blind children without special education services? What happens to blind adults without

rehabilitation services? In the next chapter the informants who were bom outside of the

United States offer their stories, including their literacy learning in their home countries,

their reasons for immigrating, and their reactions to the special education and

rehabilitation services once they moved.

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165

CHAPTER 8

IMMIGRATION AND LITERACY:

WHAT HAPPENS WHEN...

BETH: Prematurity. They did not, the hospital that I was taken to [in the
Philippines] did not have the facilities.

SIMRAN: We moved here largely because of me. My parents realized very


quickly that in India I was not going to prosper because I was not going to get the
kinds of support systems and attitudes that I needed to grow as a person.

AKIKO: When I live in Japan, we're difference here to Japan, I see more
opportunities for blind people to working here. Like over in Japan, it's really
really different, even though people there are really knowledgeable.

LUIS: They don't have rehab [in Mexico]. Plus, the state, the government, they
don't care about blindness much over there.

CLAIRE: No, nothing like [special education services] at all. {The schools in
Mexico] couldn't provide anything for me. Nothing like that at all.

YOKO: [In Japan], [rehabilitation services are] not good. Here I really don't think
it's that bad, maybe because I'm from Japan.

SAM: More conservative [in Hong Kong] and they think if you are handicap is
kind of shame, so blind people stay at home and sheltered.

AYELLA: [in the Philippines], there's no resources available. I tried to find one
and they said you need money to go somewhere.

EMMA: My dad's job.

In the last three chapters, I focused on sponsors of literacy, including parents,

teachers, and rehabilitation professionals. In Chapter 6 ,1 discussed the ways teachers

work or don't work with blind students. In Chapter 7 ,1 illustrated the ways that rehab

professionals can help or hinder literacy for adults. However, what would have happened

if special education services and rehabilitation services were not available? This chapter

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166

will address this issue by looking at the lives of the informants who immigrated to the

United States from other countries.

More than 29 percent of the people who reside in the San Francisco Bay Area

were bom in countries other than the United States, and this study attempted to represent

that population. Of the 30 informants, 9 immigrated to the United States from other

countries, including 2 from Japan, 2 from the Philippines, 2 from Mexico, 1 from Hong

Kong, 1 from India, and 1 from Ireland. Except for two of these nine informants, all

stated that they immigrated to the United States with their parents or alone for better

opportunities, as illustrated in the above quotes. For the six who grew up with visual

impairments, special education services did not exist in the public schools in their home

countries o f Ireland, Japan, Mexico, India, and the Philippines, and four o f these six were

brought to or moved to the U.S. for better educational opportunities, including Simran,

Akiko, Luis, and Claire. (Emma's family moved to the U.S. for her father's job and

Beth's father brought Beth to San Francisco in hopes of finding a cure for her blindness.)

The three who became blind as adults discussed the negative attitudes toward blindness

and the lack o f rehabilitation services in their home countries of Hong Kong, Japan, and

the Philippines. While Yoko and Sam already lived in San Francisco when they went

blind, as seen in the last chapter, Ayella moved to the United States for better job

opportunities.

Tusting (2000) argues that the past and future are part of the emerging present,

that a person's literacy is historically situated. This chapter explores this idea by viewing

the ways the immigration experience influenced literacy for these informants. How did

language issues influence their literacy? How did the lack of special education and

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167

rehabilitation services in their home countries drive their decisions to move to the United

States? How did their literacy practices in their home countries influence their literacy

practices in the United States? What challenges did they face with special education and

rehabilitation services after they moved? After providing some general information

about the immigration experiences of these informants in the first section, including

learning English and different Braille systems, the chapter takes a closer look at the

literacy experiences o f five informants. The second section focuses on the lives of two

individuals, Emma and Akiko, whose parents had to fight for them to attend public

schools in their home countries of Ireland and Japan, where special education services did

not exist, and includes their criticisms on the educational services in the United States.

Next, Luis and Claire illustrate some of the problems with the educational and

rehabilitation systems for blind and visually impaired individuals in Mexico and share

their reasons for moving to the United States for better opportunities. The chapter ends

with the literacy experiences of Ayella, a Philippino woman who lost her sight as an adult

and moved to the Bay Area for better employment opportunities. While these individuals

do not represent all o f the blind from their home countries, their stories can help teachers

and rehabilitation counselors better understand the ways the immigration experience can

shape and inform literacy.

Language. Literacy, and the Blind

Equality in education and work does not always exist for people who use English

as their second language (Dias & Florez, 2001; Moll, 2001). That inequality can be

compounded when blindness is added to the equation. Even though people who use

English as their second language may possess confidence in their reading and writing

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168

abilities in their first languages, which is often the case (Leki, 1992), they may face

difficulties when trying to use English. O f the nine informants who immigrated to the

United States, eight used English as their second language. First languages included

Spanish, Tagalog, gujarati, Chinese, and Japanese. All of these informants recalled the

struggles of learning English after arriving in the United States.

As described in Chapter 4, Beth, bom in 1987, knew very little English at age

nine when moving from the Philippines to San Francisco with her father. She had heard

English only occasionally at family parties where her brother and his friends sang love

songs. When she got to the States, she learned a little English by watching television,

shopping with her step-mother, and playing with her English-speaking cousins, but she

had difficulties in school while simultaneously learning English, Braille, reading,

spelling, and math.

At age seven, Simran, bom in 1979, spoke Gujarati, Hindi, and Arabic when she

moved from India to the United States with her parents. She was put into ESL reading

groups with "the slow kids," which kept the teachers from understanding that the main

problem with reading was due to blindness, not language barriers. Simran recalled the

experience:

When I came to the U.S. I used to get bad grades. I was put in a lower reading
group. This is in the second grade...So they put me in this little reading group
and they put me in like ESL, okay, and my parents were really frustrated and were
like she should have skipped a grade. You know, why is she not doing well, and
they couldn't figure out and because of that, I couldn't figure out that the reason
this was happening in my home and in my education was because I couldn't see,
not because I was dumb. This whole ESL thing I think was an obstacle cause
they didn't figure out that it was not that I didn't know English, but that I couldn't
read it.

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169

Ayella, bom in 1949, moved from the Philippines after losing her sight as an

adult. She needed to find a job, so she took customer service training, which included

computer skills, phone conversation skills, and ESL classes. When Luis moved from

Mexico to the Bay Area to finish high school, learning English proved difficult for him.

Luis explained:

The only obstacle was the way I have to learn English, it was too quick for me. It
was kind of hard because sometimes I used to have ESL classes. You know you
stay at school from almost eight o'clock, cause I was getting mobility lessons too,
I would get out o f school about five o'clock some days. I was getting frustrated
sometimes.

Claire, Akiko, Yoko, and Sam all used English as their second language, but they

learned it before moving to the United States. However, Akiko and Sam discussed the

difficulties of learning different Braille codes. For example, because the Chinese written

language has more than 3000 characters, Braille is based on phonetics with

approximately 50 characters rather than the English alphabet of 26. After learning

English Braille, Sam, originally from Hong Kong, wanted to learn Chinese Braille so he

could practice reading in his first language, but he said it was too difficult.

SAM: Chinese Braille is what we call phonetic, so if you pronounce a certain


word, then you write it in a certain way in Braille, so instead of actually writing
the word out, you know like you spell an English word, you just put the sound
onto paper. So you know how to pronounce it, so you know if you have a person
from Hong Kong speaks Cantonese will write the word one way and if you have a
person from mainland China would be Mandarin will write the same word a
different way.
PRISCILLA: Wow. Now have you ever used Cantonese Braille?
SAM: I tried to learn, but it was too hard, so I stopped.

Because Akiko lost her sight as a child, she learned Japanese Braille, which is

similar to the Chinese system, since both languages use many o f the same written

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170

characters. While attending college in Japan, she learned English Braille. She described

the differences between Japanese and English Braille.

PRISCILLA: Now is Japanese Braille a lot different from English Braille?


AKIKO: Well, system is basically the same, six dots in one cell, but because we
use different alphabets in print, so we have different codes.
PRISCILLA: Is it based on sound, because I think Chinese Braille is based on
phonetics.
AKIKO: Yeah it is.
PRISCILLA: So it's a similar system for Japanese?
AKIKO: Yeah, because our print alphabet is basically phonetic, so it's just the
Braille has each assigned speech and talk.

While a universal Braille code was adopted in 1932 for all the English-speaking

countries, hundreds o f languages have their own Braille codes, but all are based on the 64

distinct characters or combinations of dots. Only one Braille code, the code for music, is

used world wide. Though eight of the nine foreign-bom informants used English as their

second language and a few had to leam more than one Braille code, their literacy

experiences differed from the informants who were bom in the United States for other

reasons. The next section focuses on the literacy experiences of Emma and Akiko who

lacked special education services in their home countries and their reactions to the

services in the United States.

Parents Balancing Braille

As mentioned in Chapter 4, of the blind and visually impaired informants who

learned Braille during their childhoods, the parents of only two, Emma and Akiko,

learned Braille so that they could help their children acquire the skills of literacy.

Because special education services did not exist in Ireland or Japan, these parents served,

more or less, as the intermediaries between home and school and as the primary literacy

sponsors for their children. The alternative meant sending their children away from their

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171

families and communities to schools for the blind, which both sets of parents refused to

do because they knew that the schools for the blind had very low expectations for blind

children. In this section, Emma and Akiko describe their school literacy experiences in

their home countries and their reactions to the services in the United States.

Emma, the 21-year-old daughter o f a computer engineer and housewife, grew up

in Ireland as the youngest of three children. Unlike in the United States where most blind

children were being mainstreamed by the late 1980s and early 1990s, blind children in

Ireland still attended residential schools, but Emma's mother wanted her blind daughter to

have experiences equal to those o f her sighted sons. Determined to send Emma to the

public school in her small hometown near Galway, Emma's mother learned Braille

herself and then taught it to four-year-old Emma. Emma recalled these experiences:

[My mother] taught [Braille] to me before I went to school so that the teachers
wouldn't think I was stupid and incapable of learning so she could be like, "Oh
see she can read. She's not dumb. She can go to your public school." And then I
learned Grade 2 gradually and like one of the techniques that she used was she
made me type out all the contractions or braille them all out in the Brailler and
then we posted them, we taped them to my closet door, several pages, so that then
if I forgot an abbreviation, I got to look it up.

Before Emma learned Braille, her mother and brothers read to her every night.

Her mother wanted to make sure that Emma read the books that her older brothers had

read, the well-known fairytales in Ireland, like Magic Stone, Magic Paintbrush, Little Red

Hen, and The Enormous Turnip, as already mentioned in Chapter 5. After Emma learned

Braille, her mother ordered Braille books through a catalogue out of England. If the titles

were not available in Braille, she sent the print copies of the books to a prison in Dublin,

where inmates transcribed them into Braille. Emma described the barriers her mother

faced when it was time for Emma to go to school.

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172

So when I was starting school and [my mother] was trying to figure out how to
get books brailled, I guess before she had learned about the prison, she called this
National Council for the Blind in Dublin, a useless organization, where the person
in charge, the director said, "Well, she can just listen to books on tape," and my
mom's like, "Well, no. We need to leam Braille," and they said, "Does she really
have to read?" So that was the attitude, which is pretty pathetic, so certainly there
were those kinds o f barriers as far as school, thinking that I didn't need to leam
how to read and the principal of the school I went to was giving my mom hell and
didn't want me in the school and that sort of stuff.

Once in school, Emma memorized her way around, following the footsteps of

other children, as she was not introduced to a cane until she was eight years old. Even

then, she rarely used the cane and instead relied on her hearing to get around. Because

there were no services for blind children in the public schools in Ireland, Emma's mother

and brothers used cheat sheets to transcribe her books into Braille until she could

transcribe them herself using a Braillewriter. Once Emma was familiar with Braille and

writing more quickly, she transcribed the books and other written materials as her mother

dictated them to her. When Emma was eight years old, her mother sent her to typing

classes with sighted adults so she would be able to do her own homework. Before that,

Emma's mother transcribed the homework from Braille into print so the teachers could

read it. Emma began using the computer to type her homework, but the computer didn't

have speech, so, as mentioned in Chapter 5, her father designed a simple speech synthesis

program for the computer. With that, Emma could save, print, and spell check her

documents.

While in the sixth grade, Emma moved to the United States with her parents and

brothers, as her father took a job as a computer engineer. Both Emma and her mother

discovered that the school system in the United States was very different from the system

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173

in Ireland and argued that the special education programs in the U.S. were doing too

much for blind and visually impaired students. Emma explained:

Okay, so when I moved to the States... (laughs), they're like, "Okay, we're going
to give her a full-time aid." We're like, "No you're not." So yeah, they wanted to
give me far too much help, which I actually think is a problem with the education
system over here. It's almost better if you don't get enough help than if you get
too much help because all these kids become dependent on their aids and they
don't get to interact with their peers, because what kid wants to go hang out with
you when your aid is sitting next to you, and also they would be like, "We'll have
someone come and take notes for you because obviously you can't listen and write
stuff down at the same time. That would just be too difficult." But anyway, so
we were like, "No, we really do not want an aid. My mom's like, "No, you're not
giving her an aid," so then what they did was they put me in a class with this girl
who had some mental issue who had an aid so that basically the aid could watch
me too, so then the next year, I was going to junior high anyway, so I was like,
"Oh, okay. I just have to be in all the honors classes so that there won't be any
stupid kids who need aids and then... (laughs). I didn't say that to the teachers,
but so then that was it. There were no more aids.

While in high school, Emma moved to the Bay Area with her parents. The school

district told her parents that Emma would have to attend the high school where all the

blind and visually impaired kids went. However, Emma's parents had researched the

high schools in the Bay Area and believed they knew which one would be best for their

daughter, the one in a place they considered "a good neighborhood." Once again, Emma

and her mother fought the school system and won. However, even in the school which

was supposed to be the best, Emma faced challenges with some of the teachers. Because

her mother had put all her tests and other handouts into Braille in Ireland, this became a

literacy practice that was hard to ignore. Emma described one such incident:

One time in high school, there was this test and it wasn't Brailled so the teacher
was like, "Oh that's fine. You're just going to go to this resource room and some
aid there is going to read it to you," and I'm like, "No. It's ridiculous," and he's
like, "No, just go to the resource room," so the aid came and like got me or
something and tried to read it to me and I'm like, "No, I don't have to take this test
until they get it brailled," and he's like, "Well, just take it. You're just obviously
not ready for it," and I'm like, "No, it's not that I'm not ready for it. It's just that

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174

I'm not going to do a multiple choice test where some of the answers are designed
to be confusing and not be able to read it over myself and possibly get answers
wrong based on just mishearing something or whatever."

While in Ireland, Emma had learned to advocate for herself, and she carried that

determination with her to the United States. Her mother, as well as her father, had treated

her as an equal in their home by expecting from her the same things they expected from

her sighted brothers, including reading all the common fairytales and receiving good

grades in school. In school, Emma wanted to be treated equal to her sighted peers, which

for her meant being able to read her own tests rather than listen as someone read them to

her.

Unlike Emma, Akiko was sighted when she was bom, and her mother read to her

and taught her how to read and write with Japanese characters. However, at age five

Akiko was diagnosed with glaucoma, and at age 10 she started losing her sight. Not

wanting their only child to fall behind her peers, Akiko's parents, both teachers, hired a

woman to come in and teach Braille to them. Once they learned Braille, they helped the

woman teach Braille to Akiko. Like Emma, Akiko's mother, as well as her father, both

teachers, influenced her literacy practices more than anyone else in her life. Akiko said,

"If the kids want to go to the public school, the parents have to do almost everything."

Although most blind children in Japan were attending schools for the blind, like

Emma's parents, Akiko's parents wanted her to go to school in their community. They

knew that if their daughter attended the school for the blind, her employment

opportunities would be limited to massage and acupuncture. Plus, they believed in

inclusion. However, Akiko was the only blind student in her local school and described

some of the problems:

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Yeah, when I losing my sight, you know, I could still see but not well, so the kids
don't know because I think the kids think that I'm kind of strange because I can
walk but I can't see or I can read, but I used kind of bump into something easily or
couldn't catch a ball, so I'm kind of slow, so when I bump into somebody else,
they kid when I do it and things like that. After I exposed myself, you know,
actually when I started having hard time, I and my parents talked about this and
then we called teacher, homeroom teacher, you know, I'm losing my sight and
kind of hard to get along. I told teachers first and I think you need to help me to
disclose my visual impairment to kids, so teacher explained my difficulties, my
blindness, to the kids, so at the time, they kind of understand, they can know why
I look, I sort o f slow.

Because there were no services available for blind children in the public schools,

like Emma's mother, Akiko's mother did much o f the work for Akiko's literacy, including

purchasing the equipment. Akiko said, "I think when I was elementary school until sixth

grade, you know, I think my mom, she transcribed most of my homeworks to translate it

to print for my teacher, and actually I just remember, sometimes she transcribed handouts

from print to Braille for me." Akiko's mother also transcribed tests from print to Braille

and visa versa. After Akiko received the print test from the teacher, she would take it

home, have her mother transcribe the questions into Braille, take the Braille questions

back to the school, take the test in class with her sighted peers, take the Braille responses

home to her mother, have her mother transcribe the responses into print, and take the

print responses back to her teacher the following day. According to Akiko, none o f the

teachers in her schools in Japan knew Braille and the school would not pay for

transcribing documents.

After graduating from high school, Akiko went to college and received her

bachelor's degree in English, which is when she learned English Braille. She used a

computer for most of her work and had most of her books embossed into Braille.

However, her opportunities for employment were limited in Japan, and she decided to

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take the TOEFL test and move to the Bay Area to attend graduate school in special

education, even though she knew she wouldn't qualify for rehabilitation services in the

United States and would have to pay the tuition herself. When she finishes her master's,

she would like to find a job as a transition coordinator for blind and visually impaired

high school students in the Bay Area.

While Akiko did not attend public school in the United States during her

childhood, she has spent a lot of time in the schools as a graduate student in special

education. While she thinks the services are good, she believes that parents in the United

States do not get involved because o f the services. She said:

I found that many parents of blind kids here, they don't know Braille at all, but
there in Japan because, especially if you go public school, blind kids go public
school, teachers don't know so parents have to know, at least basic stuff, and
Asian, in Japan, we have, we more put value on education, so if parents want their
kids to go public school, their parents usually leam together. Parents have some
knowledge about Braille, teaching them Braille, cause they have to support
because most of handouts won't be transcribed so sometimes they has to do it,
parents have to do that.

Both Emma and Akiko were surprised by the differences they perceive between

literacy education for the blind in their home countries and in the United States. Many of

these differences were related to special education services. Emma asserted that the

schools in the United States do too much for blind students, preventing them from

learning to be more self-sufficient. In her opinion, full-time aids in the classrooms cause

students to become dependent, which keeps them from developing the self-advocacy

skills they will need in their futures. She stated that she developed these skills, which in

part lead to her success in college. Akiko argued that parents of blind children in the

United States need to take an active interest in the literacy education of their blind

children, including learning Braille. She asserted that parents of blind children in the

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United States often rely on special education services to teach their children, which often

results in the children not learning Braille. If the children leam Braille, the parents do not

leam it themselves.

While both Akiko and Emma complained about special education in the United

States, what is the alternative? Accessible equipment for the blind can be very expensive

and many families would not have the finances to buy these things for their children.

Also, most parents would not have the time to become intermediaries between the home

and school. If both parents are working or if one parent is raising the child alone, this

type of involvement would be very difficult. In the case of Emma, her mother was not

working outside of the home and could commit a lot of time to her daughter's education.

While Akiko's parents both taught, Akiko already had learned to read and write print

from her parents, so the task was a bit easier, more or less providing transcription

services. While Emma and Akiko complained about the special education services in the

United States, as the literacy practices in their home countries contrasted with the

mainstream literacy practices of special education in the public schools in the United

States, other informants were brought to or moved to the United States for those services.

As mentioned earlier, Simran's parents moved from India to the United States so

their blind daughter would have more opportunities. While Beth's father moved from the

Philippines to the United States for medical services for his daughter, he stayed so that

Beth would be able to attend school. Finally, Luis and Claire both moved from Mexico

to the United States for better educational opportunities, as will be illustrated in the next

section.

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“That Is My Life?”

As illustrated in the previous section, both Emma and Akiko learned Braille from

their parents and attended public schools. Both said that the parents more than the public

schools were responsible for the education of blind children. Emma's mother and Akiko's

mother transcribed books, homework, and other documents for their children. However,

in looking at the other blind informants who grew up in countries outside the United

States, these situations appear to be rare.

This section focuses on Luis and Claire, the informants who left their home

country o f Mexico because of the lack o f educational opportunities. While Luis was bom

without any sight and Claire lost her vision when she was in her teens, both had

educational experiences that compelled them to move to the United States.

Luis

Luis was bom with retinal blastoma in 1973, and the doctors removed his eyes

when he was two years old. He grew up in a small town near Guatalahara, Mexico. Luis

said that the lack o f education in Mexico caused lack of knowledge about blindness

among the people in his community, including his father and step-mother. They believed

all blind people were beggars and they didn't want their son to beg.

LUIS: Yeah. Well, in terms of my family, I think I told you that because of the
education they had, they treat a little bit different, like I couldn't go out anywhere,
especially my dad. He used to hit me with a cable, like extension cable cord. If I
was going out, he used to tell me if you get out, if you pass the sidewalk, I'm
going to spank you.
PRISCILLA: I see. Was that you and your sighted siblings or was that just you?
LUIS: Just me, I think because I was blind. I think that somebody told me this
because, you know, people because you are blind, especially in Mexico, because
you are blind, they give you money and a lot of blind people ask for money. I
think they ask for money, but it's probably it's because they're talking to people to
give money or whatever I need or want, like candy or whatever, and [my father]
wasn't liking that point.

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When Luis was eight years old, his father sent him to a school for the blind in

Guadalajara. Luis's father worked in the sugar cane fields and, because he could not

afford the tuition, Luis only attended the school every other week for the first year. After

that, his father couldn't afford to pay anymore and took Luis out of school. Luis moved

back home, but, after a while, Luis's aunt learned of a free school in Colima, Mexico,

which was for persons with various disabilities. Luis attended that school for a while and

he started to leam Braille, but he did not become proficient with reading and writing, as

the materials for reading and writing were limited in school and nonexistent at home

during school breaks. After two years, Luis was suspended from that school, but he went

back to the school in Guadalajara, as they no longer charged for their students to attend.

Still, he learned minimal reading and writing skills.

At age 15, while at home on break between sixth and seventh grade, Luis used a

slate and stylus to send messages to a girl he had met at the school. This was the only

home writing experience that Luis recalled from the time he lived in Mexico.

LUIS: I remember when I'd get out from first through sixth grade I think, I
remember what I used to do. I finished my school late, so when I was 15, maybe
14 years old through that age, I forgot the age exactly, I remember this girl. She
was blind too. I remember having the stylus in my house so what I was doing is
we were sending letters to each other.
PRISCILLA: Oh, I see.
LUIS: That was the only time for me to write, but I was already out of school for
the blind.
PRISCILLA: Oh, I see. Love will do a lot of things.
LUIS: Yep. (laughs)

Understanding that he had received a poor education in Mexico and knowing that

his opportunities were limited after graduating from the eighth grade at age 18, Luis

"decided to come to the United States to have a better job, a better education." He felt

that his job opportunities with his eighth grade education were limited to massage and

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music in Mexico. He didn't want to play music on street comers or at bus stations and

decided to come to the United States to finish his education. His father and twin brother

had moved to the San Francisco Bay Area when Luis was 11 years old, as described in

the following passage:

PRISCILLA: You have a twin brother?


LUIS: Yeah, he came to the United States with my dad.
PRISCILLA: That's interesting. Why did he come live with your dad?
LUIS: I was living with my step mother. I was living with her. My dad says if I
was okay, like if I was sighted, he was going to take me, but since I wasn't
sighted, he decided to take him.
PRISCILLA: I see.
LUIS: I know it's kind of wrong.

After moving to the Bay Area, Luis asked his bilingual twin brother to call the

high school to inquire about enrollment, but his brother refused. Finally, Luis called the

school himself. When the receptionist heard his English, she " transfer [Luis] to one of

the girls and she helped [him] a lot." However, before starting his academic courses,

Luis needed training. He explained that at age 18, he was years behind the blind and

visually impaired children in the United States who started training in kindergarten. He

said, "They teach me how to read and write Braille and how to use my cane, how to make

a phone call to the bus company and when I got to restaurant, they teach you those things

over here. How to catch the bus, the BART."

In high school, Luis learned English and English Braille before starting his other

courses. He learned how to use a Braille and Speak and a computer with speech. As he

read Braille very slowly, he used readers for all his tests and for some of his homework.

Finally in 1996 at age 22, Luis graduated from high school. He was very excited about

this honor, but his father had a different reaction. Luis explained:

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[People in Mexico] don't have the opportunity to go to school, and probably is one
the reasons they don't treat blind people like United States. I think Mexico City is
a little bit different from what I know, but still you know there's not educated
people, cause most of the people they live in the, they are farmers, and that's kind
of hard for them. For example, my dad, when I was go to school and I was
getting diplomas for him, I get one day my diploma and He don't even care about
my diploma. He just put it on the ground, and I'm like okay, and that's fine. One
day he told one of my neighbors, "You know he has to be proud for himself for
what he is doing. I don't have to be proud of him. He's the one has to be proud of
himself."

Claire

Unlike Luis, Claire was bom in the United States. She lived in the Los Angeles

area but moved to Mexico when she was seven after her father was killed in a car

accident, leaving her Mexican mother with four young children and one on the way. At

the time, Claire had sight and recalled that her mother, who was very religious, read Bible

stories in Spanish to her and her siblings.

Claire attended school in Mexico until she was 17 years old, two years after she

started losing her sight. At night when running around town with her friends, she ran into

poles on the streets, but she "tried to play it cool." She spent hours looking at herself in

the mirror, but her eyes appeared "normal", so she figured they were okay. Still she felt

something was wrong.

In school, Claire started having problems keeping up with her classmates. She

said, "I was the kind o f kid who would sit in the back, and slowly I found myself getting

closer to the chalkboard, you know, and I just didn't want to admit it for a long time that I

was losing my sight." Even though she notified her teachers about her condition, some

didn't understand as illustrated in the following passage:

CLAIRE: I remember one teacher who I did not like too much and he was, it was
a test over the chalk board and then get it write it on your paper and then answer
the questions. I remember not seeing it. I couldn't see it and it was just all blurry.

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Even though I was right in the front, I still had a hard time picking out the words.
It was just a very embarrassing and horrible in my experience, and the test was
over. He gave us a time. I barely put lots of the questions on my piece of paper
and he was getting everyone's tests, and then he comes to me and I told him,
"Look, I'm having a hard time," and he looked at me and said., .actually, he didn't
say anything. He just looked at me and grabbed my piece o f paper and tore it in
front o f me.
PRISCILLA: He tore it?
CLAIRE: Yeah. He just grabbed it and tored it with his hands. He said, "Well, I
gave you enough time," so obviously this guy did not like me or he just like tore
it, meaning I got an F.
PRISCILLA: Did he know you were having problems with your sight?
CLAIRE: I told him. Obviously when I needed to get closer, I told him I couldn't
see. I don't know why. "Well, get to the front then." Once I did, he still never. I
was so embarrassed to ask someone to get the questions for me, write it down, but
I was so, my pride. I don't know. I just couldn't. I didn't want to. There was one
girl there. She was my classmate and she got so mad at him for what he did and
got up and said, "Don't you understand. She can't really see. She's having a hard
time seeing. Why did you rip that thing up," and I was like whoa, and all of the
groups just quiet.
PRISCILLA: What did he do?
CLAIRE: She said give me another piece of paper and let me write the questions
for her, and he kind of looked at her and said, "Okay, go hurry and she only has
this minute," so she did it for me. She wrote the questions and I answered them.
But I was like wow. I was so impressed. Her name was Claire, too. Yeah, I was
really really like wow. Ever since, I always said thank you to her for that you
know, but it's like that was just one experience, but I had lots of experiences like
that.

Claire took a year off from school. When she decided she was ready to go back a

year later, her principal said no. Claire recalled the tone in the principal's voice. She

said, "I could tell with his expressions, like, 'Are you crazy? How can you do it? You're

blind. That's what you get.'" For the next couple of years, Claire spent much of her time

listening to soap operas on the radio and watching television. She left the house once in a

while, mostly for church. Though still in denial, Claire attended a blind support group at

her mother's request, where she met a few younger blind individuals who played guitar

and sang. Because she was interested in music, Claire occasionally got together with

them for coffee. At one meeting, they introduced her to Braille.

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CLAIRE: There were two men there, young guys who I would meet for coffee at
this.. .1 used to go music. I used to take voice lessons and so I was really into
music and we would meet for coffee and then they started showing me, that was
my first experience with Braille on a piece of paper with that style, you know that,
I forgot what you call it.
PRISCILLA: Stylus?
CLAIRE: Stylus, yeah, the poke thing. That's how they were trying to teach me.
I caught it pretty quickly, but also when I was with them, I was really not myself.
I was very in denial o f my blindness until years later, way years later.

After three years of just "hiding out at home," Claire met a man who wanted to

marry her. At first, Claire, as well as her family, believed that this man was the answer

to her prayers, but the more she thought about the situation, the more she longed for her

independence. She explained:

He told me that you know when we marry he wants us to have someone to take
care o f our children and cook for us and stuff like that and most girls would
probably say hey, yeah, you know. Me? I took it as Oh my God. I'm not going
to be able to take care o f my own kids? And you know, I remember this before I
went blind. Before I went blind, I saw this girl who was married to a friend of
mine, a guy friend. He was like a cousin. He married a girl that was blind and
when I used to visit him or his cousin is my friend, I remember seeing this blind
girl sitting in a comer in the kitchen and I'd always come in and say hello to her.
"Hi Blanca. How are you?" and stuff like that, and, you know, it's just like, I'd
see her and she was pretty and sweet, and another time I don't know, weeks later,
I'd go back to the house and I'd see her on the same spot again, and it just, I don't
know, started me thinking about that. Is that going to be me? Is that what's
going to happen if I marry this guy and everybody's going to take care of me?
That's going to be me just sitting on the edge o f a comer, just sitting there and
having everybody come and serve me and take care of my kids and take care of
my cooking and cleaning and oh. So I couldn't do it. I couldn't do it because of
this girl. I was like scare to think that that's all. That is my life? This is it?

From time to time, Claire received letters in Spanish from her godmother who

lived in California, and Claire's mother would read them out loud. The Godmother went

on and on about the opportunities for the blind in the United States, and she told Claire

about the Foundation for the Junior Blind in Los Angeles, where a blind person could

leam to read and write with Braille and leam to use computers with speech. These letters

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inspired Claire and, although she was very scared, she made the decision to move. She

explained that the decision was hard but that she wanted independence more than

anything else. She said:

I didn't know a way to do this, but the more information [my Godmother] gave
me about learning computers, I was like impressed. I was like wow. Blind
people can do that. I just couldn't believe something like that can happen and so
part o f me I think part of me was to come back to America to leam and go to
school and be independent, but the other part of it was that I didn't want to marry
this man cause I'm not in love, so I took charge in my hands, even though my
family was upset because, like I said, this wedding was a big wedding. I mean,
my sister-in-law was making my dress already and both families were like so
happy and so it was a big deal and I broke everybody's hearts, my mom's heart the
most. She was like so upset with me for a long time. She cried because I think
she was really happy that someone was taking care o f me. Maybe she felt that in
some ways she didn't have to worry about me anymore.

Because Claire was bom in the United States, she was eligible to receive

rehabilitation services when she moved to California. She attended the Foundation for

the Junior Blind in the Los Angeles area, where she learned Braille and cane travel.

While she felt as though she was regaining her independence through these skills, she

recalled that being able to get books on tape, something she was unable to get in Mexico,

affected her the most. She explained:

Before I went blind, I was always a big time reader. I loved to read. I was very
into history and read a lot, and I read a lot of books in Spanish, lots and lots. I
spent tons o f time reading reading reading, and of course going blind was
horrible. It took away something that I loved to do and I was depressed for years,
but um when I first came to Long Beach and I heard about books on tape, I got
tons of books on tape and I was really into it at that time too. I was really into.. .1
would finish one book in couple of days, and so into the book, I'd move onto the
next one and move onto the next one, just like that.

After learning some basic Braille and typing skills at the Foundation for the Blind,

Claire still felt as though she hadn't regained her independence, so she moved to the Bay

Area to attend a more intensive training center, where she worked on Braille and

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mobility, as well as computer skills. While at the center, she became pregnant and

decided to stay in the Bay Area. She had family in the Los Angeles area and thought

they would be too overprotective.

Today, Claire's son is almost 10 and she is ready to go to school to finish her

GED. Once she completes that, she plans to take college courses at a community college

in order to get a degree in computers. She says that she will never move back to Mexico

because o f the way blind people are treated.

While Luis and Claire had very different literacy experiences, they both faced

challenges in their home country of Mexico. Luis learned to read and write using Braille,

but his skills were very limited from going to the school for the blind. His education was

very sparatic as his father couldn't afford the tuition. When he left to move to the United

States, he had finished school only through the eighth grade. While Claire learned to

read and write using print in the public schools in Mexico, her education was cut short

when she lost her sight at age 17. While Claire knew how to read and write, she lacked

the skills to read and write as a blind person. Unfortunately, training was not available to

her in Mexico, but she learned o f the services in the United States through the letters that

her aunt sent and her mother read to her.

Both Luis and Claire believed they would have better educational opportunities

by moving to the United States, which they did. With the special education services, Luis

took classes and graduated from high school. With rehabilitation services, Claire

received training so she could live independently and plans to get her GED very soon.

Both found better lives for themselves in the Bay Area, as did Ayella, as she describes in

the next section.

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“The Outside World”

Bom in 1949, Ayella grew up in the province of Batangas in the Philippines. Her

mother and father went to school through the second grade and had just enough education

to read and write a little and sign their names. However, they believed in the importance

of education, and though they were very poor, according to Ayella, they saved enough

money to send their children to school. After high school graduation, Ayella went to

college in Manila and received a bachelor o f science degree in chemistry and found a job

working as a forensic chemist for the police.

One of Ayella's brothers had joined the U.S. navy and had come to the United

States in 1968, at which time he petitioned for their mother to come. Finally in 1981,

Ayella's mother moved to the United States. Ayella recalled the incident:

She just came here because she wants to petition me and I encourage her to come
and she didn't say no, so she came here and luckily her first stop was Chicago and
I had someone there meet her because she had a two to three hours layover and so
her envelop which is like 18 by 12 maybe. She has an envelop like that, plastic
envelop, with her x-ray that's immigration thing, so I put her name and wrote it in
big letters both sides of the plastic envelop which was transparent so they can see
my mom when they come to Chicago, so luckily they saw her and then they were
with her until she got into the final trip going to Virginia with my brother, so my
mom, I was asking her when she came back and when I talked to her how she felt
about it. Like you don't know. I mean she can see exit signs and she said, "Oh
when that lights up, I go there right away. I'm the first one in line."

Three and a half months after arriving in the United States, Ayella's mother

received her green card and petitioned for Ayella to join her. Ayella wanted to work in

the United States for 5 to 10 years and return to the Philippines, so that she would have

money to help her family. However, before the petition went through, Ayella went blind.

Like Sam and Yoko in the previous chapter, Ayella lost her sight at the high point of her

career. However, unlike the two of them, she was living in her home country when she

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went blind at age 30. While testing an explosive for the second time in her job as a

criminal chemist, there was an explosion. She described the situation:

I got the result, but you know I was not satisfied with the color in the test tube
because when I poured the chemical, the chemical adheres to the side o f the test
tube, so the color is like scattered on the side of the test tube. Now the book was
saying that the color is like a nice round pink on the test tube, but I was not
satisfied with that and I repeat the analysis and that repetition of the analysis,
there was a sudden explosion, and so I probably had a mistake. I probably had an
error. Maybe I didn't dry the test tube. It's human negligence.

Besides losing her sight, the explosion severely burned Ayella's hands and

abdomen. For a long while, the only thing she could move was her toes. Because a

family member or friend needs to stay with a hospitalized person in the Philippines,

Ayella's mother returned and stayed with her the entire four and a half months. During

that time, Ayella thought of all the ways she could kill herself, including jumping out the

window of the hospital and overdosing on sleeping pills, but she said her love for her

family stopped her.

When Ayella left the hospital, she wanted to find resources, but she wasn't sure

where or how. Every weekend, Ayella's sister, who worked as a meteorologist in Manila,

visited the family. Every Sunday night when she headed back to her own home in

Manila, Ayella pleaded with her sister to help find resources on blindness. However,

every Friday, Ayella's sister would show up without any information. Finally, two years

later while listening to soap operas on the radio one day, Ayella heard about the

American Printing House for the Blind, which encouraged her. Through that reference

on the radio, Ayella managed to find a tutor to teach her Braille, using her pension from

her job to pay. Ayella described her motivation:

That was my first thing that I decided to look for when I became blind. When I
came home, I said the first thing I need to do is Braille. I don't know what Braille

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188

is, but I know it's a means of communication for blind people and I heard Braille
probably when I was in the elementary, but I don't know what it is. I don't know
what to do, so I tried to find resources for Braille, so I had a tutor. I was paying
for the tutor and I was paying for my transportation to and from the tutor to my
house and so those are factors that pushed me to move faster and leam Braille as
fast as I can. Here I am. I don't know about employment and I'm spending
money. What will happen to me? So I learned Braille for three and a half
months. I was seeing the tutor once a week, two hours every week, and I said I
need to leam this ... Every meeting, she would give me a set o f contractions and
then I would leam it and then I would go to the next page where I will leam more
and then get the contraction from the context of the sentence, so I was able to
leam faster, because I was not doing anything. I was just learning Braille. I was
not doing anything in the house. I was just eating, eating and sleeping. Now I
learned Braille and now I was so glad and at the back of the book which is also
from the Library o f Congress, at the back of the book is the Hadley School for the
Blind address. Now after I learned and before I finished my Braille with her, I
was up to grade 2 and then I gave myself a project... After learning the Braille,
grade 2 , 1 was in the province and so I wrote a letter in Braille to Hadley school
for the blind and I was inquiring and then they responded in Braille also. Two
weeks after when I get the response, I was like in seventh heaven. I was so happy
that I open my world. I can communicate again to the outside world.

Ayella took several classes through the mail with the Hadley School for the Blind.

She took one class on computers, even though she did not own a computer. She learned

about the system and said, "It was all theory." Then, after several months, Ayella found

some information about rehabilitation training. The center was for all disabilities, not

just the blind. However, Ayella was discouraged, as there were only two jobs available

for a blind person in the Philippines—massage and music. She decided to get training in

massage, as she figured she could make more money, but she described the job as

"degrading."

AYELLA: During the course of my training, I learned myself so I had to be on


the job training to be able to get a certificate, so they put me on the job training in
a gym, like a spa, so I was there and I was blind doing a massage and you know
tips is common also there, and this lady one time said, "Okay, I don't think I have
bills here, but I can give you these coins." Right. So she came to me and said,
"Put your hand out," so it's like this. (Ayella takes my hand and positions it like a
cup.) "Put your hand out like that, right, and put your hand out and I will get all
this coins at the bottom of bag."

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PRISCILLA: Where was this?


AYELLA: In the spa, gym where I was doing all the.. .in the Philippines. SO you
know I cried. I mean, I didn't cry in front of her because she just put all the coins
and she left the room. I cried because where I was before I became blind, I was
giving tip. You know in restaurants we give tips. We take a taxi, we give tips,
and here I am and these coins, not even bills! Coins! I said this is temporary. It's
okay. This is temporary. So those are the moments that like the up and down o f
being blind and trying to get up and trying to do some goal and trying to be
independent.

When she arrived in the Bay Area in 1991, almost 10 years after losing her sight,

almost 10 years after her mother had petitioned for her to come to the United States,

Ayella wanted to find a job right away, as she needed money. Many of the programs she

looked at required at least nine months of training, like computer programming. She

thought she could get a job teaching Braille at one of the centers, but most required a

teaching degree. She began training to be a medical transcriptionist, but then she learned

o f a job as a receptionist at the Lighthouse for the Blind in San Francisco, where blind

people can take recreational classes like yoga, arts and crafts, and gardening, and living

skills classes like orientation and mobility, Braille, and cooking. Ayella needed money,

so she took the job as receptionist, which later led to a job as store manager at the

Lighthouse for the Blind.

Today, Ayella travels back and forth on BART from the East Bay to San

Francisco with her yellow lab. She works in the Lighthouse store, where she does the

inventory, purchasing, and shipping of products for the blind and visually impaired. "I

manage it," she said. " I do a lot of decision making on returns and what to order and

everything that you could think of in a retail store."

Ayella has come a long way since losing her sight; however, it took a long time

for her to get there. As illustrated in the previous chapter, some rehabilitation clients who

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receive training after losing their sight go back to work within a year. Because Ayella

was living in the Philippines, she did not hear about any resources for blind people until

two years after she lost her sight when she chanced upon an ad for the American Printing

House for the Blind while listening to soap operas on the radio. Luckily, because she was

injured on the job, she received a small pension which was enough to pay a tutor to teach

her Braille. While she was unable to use those literacy skills in her job as a massage

therapist in the Philippines, she uses those skills every day in her job as the store manager

at the Rose Resnick Lighthouse for the Blind in San Francisco.

Summary

Except for one of the nine foreign-born informants, all stated that they immigrated

to the United States with parents or alone for better opportunities, primarily education

and work. Although many struggled with language barriers when they moved to the

States, they felt as though their lives improved tremendously. The lack of special

education services in their home countries influenced literacy education for Beth, Simran,

Emma, Akiko, Luis, and Claire. While Beth's father brought her to the States for medical

reasons, he decided to stay so that his daughter could attend school, which was not an

option in the Philippines because of distance and finances. Simran's parents moved to the

States so that their daughter would have better educational opportunities. Emma and

Akiko attended their public schools in their communities in their home countries, but

only because their parents took charge and acted as intermediaries between the home and

school. While Luis attended a school for the blind in Mexico, his education was sparatic

and limited. When she was sighted, Claire attended the public school until age 17;

however, when she went blind, her education ended.

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Like the lack o f special education programs, the lack of rehabilitation services in

other countries affected the literacy experiences of the foreign-born informants who lost

their sight in adulthood. Sam and Yoko stayed in the United States when they lost their

sight, as the options for careers would have been limited in Hong Kong and Japan.

Ayella moved to the States so that she could have a job as something more than a

massage therapist, a job she viewed as degrading.

Many of these informants told stories of the negative attitudes toward blindness in

their home countries. While negative attitudes still exist in the United States, as

illustrated in the previous chapters, there has been progress in the last several decades.

Similarly, several of these informants told stories about the lack of equipment in their

home countries, as in the case o f Ayella learning how to use a computer without a

computer. After moving to the States, they were exposed not only to positive attitudes

about blindness, but also to some of the best assistive technology for blind and visually

impaired people in the world. In the next chapter, you will see how some of this

equipment is being used in the everyday lives of the informants in their homes and in the

community.

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CHAPTER 9

EVERYDAY LITERACIES OF THE BLIND:

HOME AND COMMUNITY

When making waffles in her kitchen, Sarah uses the recipe that has been handed
down from her grandmother to her mother. Before starting, she accesses her
Email account, opens the file from her sister, downloads it to her computer, and
saves it on her notetaker, as she does not want to run back and forth between her
kitchen and her bedroom where she keeps her computer. With the notetaker on
the counter and a headphone bug in one ear, she scrolls down through the list o f
ingredients, one at a time. She measures the ingredients by first feeling the sizes
of the various measuring cups and spoons in her baking drawer, determining the
ones she needs by touch. When she finishes adding all the ingredients, she goes
through the list one more time, just to make sure she has not forgotten anything.

When all the ingredients are in the mixing bowl, she turns on her Kitchenaid and
listens for the speed she wants. She turns the mixer off and on, each time
checking the consistency of the waffle batter with a spoon. When she feels it is
right, she scoops the batter with a measuring cup and pours it in the heated waffle
maker, spreading it with a spatula. Because she cannot see the light that goes off
to let her know when the waffles are done, she estimates the time and sets her
talking timer for eight minutes. When the timer goes off, she lifts the lid and feels
the top of the waffles with her finger. Setting the lid back down, she says, "Two
more minutes."

Previous chapters primarily have focused on past literacy practices in the lives of

the 30 informants. In Chapter 4 , 1 traced literacy in the lives of four informants,

illustrating some o f the ways technology changed or did not change their political,

economic, social, and/or personal positions, particularly paying attention to access to

information. In Chapters 5, 6, and 7, the focus shifted to sponsors of literacy of the

informants, including family members, teachers, and rehabilitation professionals. The

previous chapter described the ways the lack o f literacy sponsors, including special

education and rehabilitation services, in other countries and immigration to the United

States influenced literacy in the lives of nine informants. Finally, this chapter focuses on

the everyday literacies in the lives o f all 30 informants.

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193

In this chapter I draw on the work of Barton and Hamilton (1998, 2000), whose

work focuses on everyday literacies, which they refer to as vernacular literacies, or

literacies that are learned informally and put into practical use in people's daily lives, as

in the above example of Sarah. In this one literacy activity, Sarah connected with a

written text (the recipe), social (communication with her sister), and history (grandmother

and mother passing down the recipe), in a particular domain (kitchen in the home).

While Barton and Hamilton make a distinction between informal and formal literacy

learning, they argue that often the literacies overlap in the various domains. They write,

"Domains.. .are not clear-cut, however: there are questions o f the permeability of

boundaries, o f leakages and movement between boundaries, and of overlap between

domains" (Barton & Hamilton, 1998, p. 10). Each section of this chapter will explore the

practices and the literacy tools that are being used in two domains, the private and public,

home and community. While I do not include sections on school or work, at times

literacies from other domains will merge, like work or school for the informants who are

attending college.

While previous chapters have touched on these domains and the equipment being

used, this chapter will compare what methods the informants are using in their everyday

lives today and the reasons why they choose particular mediums for reading and writing

and equipment for accessing print. Also, this chapter will reveal the ways the past

literacy practices and the social situations of the informants inform their present

literacies. Each section will provide general information on the literacies being used in

the particular spaces and occasionally focus in on individuals to provide more concrete

examples.

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194

Literacy at Home

"At home, it's all Internet, email and stuff like that to send stuff out to clients. I

still use NLS. I'd rather read Stephen King with a voice. Yeah, The Shining still sends

shivers up me. I finally read it about a year ago. You know, I use a scanner for mail and

stuff like that on Open Book. You know, my girlfriend's trying to beat me into

submission about newer technology, but a lot o f it seems kind of superfluous to me. Still

don't know Braille. Yeah, I guess when I think literacy, I think access to information,

and, you know, I have a satellite dish and I watch three hours o f TV a week, but it's

usually CNN or 60 Minutes, and I listen to a lot of radio just to kind of stay current. It's

on now and I just heard the Michael Jackson verdict. I have satellite radio as well. I hire

readers and stuff like that, and a lot of my friends are pretty well educated, so that's part

of it too, is just sitting around talking with people.

In the above quote, Jeffrey provides a list of the literacy equipment he has in his

home today and discusses some of the tasks he does with those tools. For example, he

said that he uses the Internet and the computer to correspond with clients, the radio and

television to access the news, the scanner to read his mail, and tapes to read for

enjoyment, all social practices. In this section, I discuss the literacy activities that are

being performed with the various literacy tools in the homes of the informants.

All of the informants who learned Braille as children use Braille in their homes

today, primarily for organization. After writing Braille on Braille tape, they put the

labels on items, such as appliances, exercise equipment, CDs, books, file folders, clothes,

shoes, cleaning products, pill bottles, spice jars, and canned vegetables with magnetic

labels that can be reused. For example, in David's home, Braille can be found on the

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195

kitchen appliances, including the stove, microwave, and dishwasher, the treadmill, the

cleaning supplies beneath the kitchen sink, and every book, CD, and DVD in the small

house that he rents. According to David, who likes to search through his collection so he

can recommend and lend books and CDs to his friends, "I'd go nuts without Braille on my

stuff.”

While David doesn't know what he would do without the Braille labels on his

books and CDs, Ayella likes to cook and worries more about her appliances being

marked so that she will know that she has the right temperature so she can make the

recipes that have been handed down to her from relatives in the Philippines.

PRISCILLA: So like in your home, do you have things marked in Braille?


AYELLA: Yeah. My microwave, I was the one who brailled it and of course PG
and E came for ovens and stoves and dishwashers.
PRISCILLA: PG and E came? What do you mean?
AYELLA: PG and E come to your house if you need something to be labeled.
They make dots so that they won't rub off.

Besides labeling, a few of the informants use Braille for keeping financial records

and reading for pleasure. Smoky uses a Braillewriter to keep track of his bills and

checking and savings accounts. Bobbi wants to "see" what she is reading. She said, "I

have some cassette books, but they're secondary. I want to see things. Remember I was

an English teacher, so I want to see how things are spelled, punctuation, paragraphs and

the whole deal." The most unusual use o f Braille came from Gloria. While she uses

Braille for everyday organization, like taking down phone numbers and reading recipes,

at one time she found a very different use for Braille. She explained:

In one o f my college dorms I really didn't like the ugly pea green walls in my
room, so I would take old Braille magazines and put it up as wallpaper and then I
would put just regular things on top o f that so kind of the backdrop was Braille.
People would walk in and feel my walls, and whenever I was really bored, I
would walk over to my walls and read something really random.

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O f the five informants who have children, three have read Braille books to them,

including Smoky, Jean, and Maria. While Smoky and Jean no longer have young

children, Maria understands the importance of emergent literacy and regularly reads to

hers, all under the age of six. She said, "I purchase books from like Seedlings and

National Braille Press and I have people read me books and I Braille them out myself,

that kind o f thing." On the other hand, Luis and Claire claim the lack o f proficient Braille

skills have prevented them from reading to their kids. Luis said that it is important,

though, and that his blind wife plans to order children's picture books from Seedlings and

download children's books from WebBraille and other sites so she can read to their son.

Still, Luis enjoys time telling stories and singing songs to his child. He said:

Last night before he go to sleep, I put him in his crib and I started singing. We
sing to him a lot too, but I was kind of like story to him, like little piggies, cause I
know that one in Spanish. I was doing it in Spanish do he can learn the language.
English he's going to learn no matter what. Spanish is going to b e.. .it's crazy for
kids. Sometimes they don't want to speak Spanish cause they know the English
and they want to develop English and English and English. He's going to learn
Spanish.

O f the 30 informants, 10 use human readers on a regular basis for personal

business and finances, such as reading mail and paying bills. O f those 10, 9 use paid

readers and one uses a volunteer reader from the Lighthouse for the Blind in San

Francisco. (Five other informants say that sighted family members take care of the

personal business and finances in their homes.) All of the informants over 65 use readers

for the majority of their business. Adelle, Bobbi, Jean, and Smoky have been using

readers for years, as they did not have scanners and other accessible technology when

they were younger. Smoky has been using the same reader once a week for more than 20

years. While Bobbi keeps a list of at least three readers on hand all the time so she can

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197

find one when she needs one, she said she mostly uses her sighted husband. Jonathan

uses his live-in caretakers for much of his reading and hires a reader for the rest, as he has

no way of reading and writing himself.

With the introduction of computer scanners in the 1990s, many blind and visually

impaired people have tried using scanners rather than human readers for accessing print

materials, both reading for pleasure and reading as a means to an end, like paying bills.

However, Many informants prefer readers over scanners for various tasks, such as going

through their commercial mail. Jean and Ayella hire readers who come to their homes

once a week, as both believe human readers are better than scanners that won't read

various fonts or photographs. Similarly, Simran uses readers for her mail. She

explained:

I actually think it's far more effective to go through [the mail] with a reader cause
she'll say, “Bank of America,” and I'll say, “Just file it here,” or she'll say, “This is
the electric bill,” and I'll say, “Okay, just give me the number,” you know, just the
amount and the phone number that's on the bill or I even have the phone number
now on my computer so I just pull it from that and it's just faster, I think, to go
through some o f that with a reader, cause you can do a lot with a computer, but I
think that there will never be a time when a blind person will not use a human
reader completely, and I disagree with the total techies.

While most o f the informants who use readers want their readers for sorting mail,

Abdul uses a reader to proofread all o f his writing. He said, "People who never had any

vision tend to be atrocious spellers, which is why I have a reader review all of my written

work for spelling and punctuation and format and things like that.” In fact, many of the

informants said they have poor spelling from using Grade 2 Braille, which is based on

contractions. Still, some informants, especially younger informants, said they have never

used readers and may never use readers, like Emma. Emma said that the technology has

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made her more independent, implying that using readers is a form of dependence, as

illustrated in the following dialogue:

EMMA: I think the technology has made me a lot more independent than I
otherwise would be.
PRISCILLA: In what sense?
EMMA: In the sense that I can access most things either electronically or by
scanning. I very rarely use a reader which people find unusual, a lot of people. I
realize there may be times when I do need to use a reader, so in that sense, there's
still some dependence but I think I use a reader less than a lot of other blind
people.

Twenty-four o f the informants own scanners, but only eight use their scanners

regularly. As mentioned earlier, many informants argue that the scanners do not work

very well for mail, especially for glossy envelops. In fact, a few informants

automatically throw away glossy envelops when they feel them, assuming they contained

junk mail. On the other hand, some informants want to get books from libraries or

bookstores and scan them onto their computers. While Adelle doesn't scan very often,

she said, "The scanner has enable me to read some books that I otherwise wouldn't have,

so I have enjoyed being able to go and buy a print book and read it."

Currently, scanners work well for books and letters in plain text, and the market

has been expanding into other areas, such as bar code scanners, which would allow blind

and visually impaired individuals to scan food labels. According to Jean, one of the most

frustrating things for blind people has been lack of access to household items like labels

on pill bottles, especially for newly blinded individuals. She explained:

You can tell them all about the books and the library but the immediacy o f being
able to read, like I'll get a bottle of something from the store and since the opening
and stuff has been so changed, I can't figure out how to get the stupid thing open,
and it says on it, it says something on it that tells a sighted person how to get it
open, but it just makes me so mad that I can't tell how to get that thing open, and
you can understand how a newly blinded person is just crushed by this. All their
lives they've been able to look at this bottle and see how to open it and all o f a

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sudden they can't do something as simple as figuring out how to get this damn
thing open.

All 30 informants have access to a computer at home, and 28 of them use

accessible technology to access the print on the screen. Those 28 have screen reading

programs, either Jaws or Window-eyes, and five of them use Zoomtext as well. Most use

the computer for writing letters, keeping address books and other lists, and downloading

and storing documents, including audible and other accessible books. Jean and Bobbi

both write articles for newsletters on blindness. Adelle writes political letters on human

and animal rights. While Akiko uses the computer to keep in contact with her parents in

Japan, occasionally she writes letters to them in Japanese.

PRISCILLA: So you can still sit down and write a letter in Japanese?
AKIKO: Yeah, I could write longer sentences.
PRISCILLA: But how can you.
AKIKO: Using like a guide, like template.
PRISCILLA: Right, but with all the characters, there are so many characters, how
can you?
AKIKO: Well, I still have kind of memory.
PRISCILLA: Have you ever asked your parents if they could read your
handwriting?
AKIKO: Yeah, they can.
PRISCILLA: Really. That's pretty amazing.
AKIKO: Yeah, if you have basic idea o f characters, cause I used to able to see
and I thought, I learned enough characters.

While Akiko occasionally uses a pen and paper to write letters to her parents in

Japan, the other informants use their computers for all correspondence, as well as other

activities. All have Email accounts and several subscribe to Email lists on various topics,

including animal rights, antique cars, the arts, books, blindness, children, coffee, law,

music, networking, politics, religion, and science. O f the informants, 14 download

audible books, 8 download news articles, 7 download recipes, 11 pay bills online, and 16

order products online, including 6 for grocery deliveries. Seven use the Internet for

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immediate virtual communication, like playing interactive games and chatting. Daniel,

Joseph, and Luis play blind-friendly computer games with other blind people in other

parts of the country. Maria met her husband "through like personal ads online." Still, she

would rather use Braille for small tasks. She explained,

I take my notes for bills, phone numbers, I put that in Braille, cause sometimes it's
just like too much to turn on the computer. It's a blindness thing. Like I don't
have that kind o f time. You know, if I can just go look it up really quick, okay I'll
make the phone call, but if I've gotta go you know through all these hoops just to
get the phone number, I'll put it off till another day, so Braille's a lot more quicker
than the computer.

Jonathan and August do not have screen reading programs. Jonathan uses his

live-in caretakers to sort through his email, which primarily consists of personal letters

from his son, and August uses screen enlargements to access documents, but this has not

proven very effective as the following passage demonstrates:

AUGUST: Some computers you can like blow stuff up, so we just blow it up as
much as we can and just have to bare with it.
PRISCILLA: So you do have a computer but you use regular enlargement. So
can you read the print on the computer?
AUGUST: Sometimes, but it's hard. We tried enlarging my aunt's computer and
we actually ended up flipping the screen around like the computer was set on the
desk and we pressed enlarge and the whole screen flipped upside down so we had
to turn the whole thing upside down.

Sixteen of the informants use their computers to download texts to other portable

devices, including laptops, notetakers, MP3 players, Bookports, and Book couriers.

Recently Book Share has started scanning and uploading the best sellers listed in The

New York Times. Within a month of being added to the list, blind and visually impaired

individuals can download these books. Sarah calls her older sighted sisters and gets lists

o f the books they have read and then goes to Book Share and downloads as many titles as

are available. She starts listening to mysteries late at night and often continues to read

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until she finishes, many times at four in the morning, skimming through as fast as she can

listen to the electronic voice on her Book Courier. Michael and David often correspond

about various podcasts and available books on history and politics. David also scans

political books and sends the print copies to his sister, mother, or father, as he has no use

for them once he has scanned them in his computer.

Most of the informants use Newsline for the Blind, the Internet, and/or the radio

as their main sources for accessing the news. Five individuals download newspapers

from Book Share or listen over the phone to Newsline for the Blind on a daily basis,

including Anthony, David, Dawn, George, and Michael. David downloads The New York

Times every morning and listens to it on his Book Courier on his way to work. Adelle

listens to NPR on the radio all day. Michael falls asleep to news on the radio every night.

Only a few o f the informants watch the news on television, including Jeffrey.

Currently, four of the informants attend college and use their computers at home

for most o f their work; however, they access the print using different methods. O f the

four, only Emma uses Braille for both reading books and taking notes for her major

(English and French) and minor (Classics) course requirements. She said, "I read

practically everything in Braille in some form using a Braille display usually because it's

faster than printing it out, although I used to read hard copy Braille all the time before I

got a scanner and the notetakers and all that." The others, including Daniel, Akiko, and

Simran, listen to their texts for classes by downloading audible files or books that have

been scanned into their computers. Simran said, "I think I do 98 percent o f my reading

and writing for my law classes on the computer with Jaws." Because she can still see

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large fonts on the computer, Simran often checks to see "if the font is pretty" when she is

ready to print legal documents for classes.

According to all four college students, access to Email on their computers has

been very helpful in their education's. They can receive and send assignments to

professors, as well as receive handouts in advance. Emma discussed the ways technology

has changed her interactions in class.

EMMA: Obviously I think the technology is a great asset because now I can
pretty much access anything I want if I can take the time to scan it, whereas
before that wasn't the case and even if you know for school we get handouts or
whatever, I don't have to get them in advance, I can just scan them at home,
whereas in high school it was always like, okay am I going to get this handout or
not.
PRISCILLA: And then someone had to read it for you?
EMMA: Exactly. I really hate when you ask someone to read it and they start
reading it like really really loudly, and I'm like, "NO. Read it quietly.”
PRISCILLA: Yeah, there are other people in the room.
EMMA: Most o f my professors Email handouts to me, which is good, but I hate
those cards that we have to fill out on the first day with your name and blah blah
blah and they put it in their little seating chart thing and so I'm always like,
"Okay, I can't do this. Can I type this at home and and email it to you tonight?"

While most o f the informants welcome the new technology in their homes,

especially the college students, a few resist, including Jeffrey. He believes that a line

needs to be drawn when it comes to accessing documents, as explained in the following

dialogue:

JEFFREY: Are you a Star Trek fan? Do you know what a Borg is?
PRISCILLA: Not really.
JEFFREY: They're half human, half robot. Anyway, [my girlfriend] leaves the
house in the morning and it's like a damn borg. You know, it's like you have four
sets o f headphones and you know and that's a little too much for me. You know,
one o f the first rules of starting a new business is KISS, keep it simple stupid, and
I like that with regard to blindness and technology and stuff. It's like, “Hey if I go
to the Internet and I download this to this and then that goes to that and that goes
to that, then I can get an MP3 and then I can bum it to a ...” and I'm like, “Who
cares?”

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203

While Jeffrey has resisted new technologies, he can no longer read print at all and

has not learned Braille, which has caused some problems for him as a self-employed

lawyer and financial consultant who works out of his home. For example, when Jeffrey

is away from his home and meets with a potential client, he must get on his cell phone

and call his house with the contact information for this client, as he has no means of

taking down the client’s information. When he gets home, he listens to his messages and

types the information on his computer. Still, Jeffrey claims that he is very successful in

his job. He said reading one article when he was 21 years old got him where he is today.

He explained:

I read some article about the socio-economic status of, you know, blind people
and employment and all that stuff and that got me interested in finance and, you
know, I’ve been learning about it ever since then. I think if I didn’t have that kick
in the ass, I never would have sort of learned about that stuff And I might have
just been happy to spend the rest of my life being incredibly bored, but, you
know, that got me to start reading again through NLS, so Money Magazine was on
tape, Fortune was on tape, and I learned a lot about that stuff and that was really
important for sort of where I’ve gotten to now.

O f the 30 informants, eight have magnification technology like CCTVs to enlarge

print documents. Abdul has a device that plugs into his TV and projects images on the

screen, but he can no longer use it because of the decrease in his vision. As mentioned in

Chapter 7, Simran uses her CCTV for watching Indian soap operas but has only used it

for magnifying print five times in the last three years. Daniel uses his CCTV to read the

mail only if a sighted family member is not available. August and Anthony are the only

informants who can use a CCTV for reading for pleasure, but currently Anthony is

waiting to have his fourth cornea transplant and cannot see well enough to use it. He

said, "I'm actually being loaned a portable CCTV right now from a friend because I'm

thinking about getting one because unlike a pocket magnifier, it's able to invert, so I can

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put white text on a black background, which, you know, because o f my glare, I can see a

lot better."

While the technology has gotten better, blind people are unable to access many

off-the-shelf consumer products for their homes. For example, on screen displays for

TVs, DVD players, stoves, and other appliances have cause lack of access for blind and

visually impaired individuals. However, in recent years, companies for the blind, as well

as the sighted, have been making tactile household products, including Braille watches

and measuring tapes, and talking devices, including clocks, timers, watches,

thermometers, thermostats, caller Ids, blood pressure machines, glucometers, bathroom

scales, remote controls, money detectors, and color detectors. All 30 informants use one

or more o f these items on a daily basis. For example, Dawn has a Braille chess set, a

Braille spice rack, a computer with Jaws and Open Book, a Braille Light, a talking clock,

a talking calculator, a talking timer, a talking picture frame, a money detector, and two

color detectors, all of which she mentioned on the tour of her house on a podcast she put

on the Internet. When Heather and I talked about colors, she asked about my color

detector.

PRISCILLA: So do you remember colors or anything?


HEATHER: I can't picture them anymore. I understand them and I'm comfortable
with them, but I don't picture them, and if it's a really extreme color, I'm like I'm
lost, like someone has to break it down for me, so I remember really basic colors,
but somebody will have to break down and tell me the colors involved.
PRISCILLA: My color detector sort of breaks down the colors, like it will say red
blue instead of purple.
HEATHER: You have a color detector? Awsome.
PRISCILLA: Yeah, I got one for my birthday. It works pretty well, but it always
says my face is dark orange. Always, it's so funny. In fact, I moved from Walnut
Creek to El Cerrito last year. The movers were there and asking how I did things.
I said, "Listen to this," and I held the color detector up to my face and it said,
"Dark orange dark orange," and the guy who was in charge put it up to his face,
and it said, "Dark orange, dark orange," and he said to one o f the guys, he said,

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"Leo, come in here," and so this guy comes in, and he says, "Put this up to your
face, and it says, "Brown, brown, brown," and the guy says, "I'm not brown. I'm
Black and proud o f it." It was really funny.

In looking at the ways the informants are using literacy in their homes, it is clear

to see how their past literacy practices have shaped their literacy today, especially the

ways they use or do not use Braille. While many of the informants mark things around

the house in Braille in order to stay organized, everything from their dishwashers to their

shoes, some do not possess the skills to do this. Luis and Claire wish they could enjoy

the literacy activity o f reading to their children, but they cannot read Braille fast enough

to keep their children entertained. On the other hand, Maria reads to her children

regularly, as she learned Braille as a young child. Similarly, Jean reads to her

grandchildren when they visit her in San Francisco. They realized the importance of

reading, either because they were read to or not read to, and want to pass that literacy

practice on to others.

The majority of the older informants still insist on doing things the "old-fashioned

way," using human readers and keeping hard copy files in Braille, while many of the

younger participants use the most recent technologies for similar tasks. Those over 65

use readers for their mail, while younger informants view readers as a form of

dependence. Emma said her scanner meant independence whereas a reader would mean

dependence. Still others, like Jeffrey, seem to be caught between worlds.

While all 30 informants have computers in their homes, they use them for very

different tasks. All o f them use their computers for correspondence, such as writing and

printing letters to send to politicians or Emailing messages to their friends and families in

other countries. Many younger informants download books and newspapers, shop, play

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games, and chat online. They enjoy the technology in their homes. Similarly, many of

the informants enjoy having newer technologies in their community, as will be seen in

the next section.

Literacy in the Community

"Besides the job offer, what did attract me to the Bay Area, what initially attracted

me, I had this love of San Francisco and wanted to be up here well in advance, and I

figured well having a lot o f friends up here and the blind and disability community, being

a progressive town, and having excellent transportation. I think probably transportation

was among the number one pool that brought me up here and is keeping me up here for

the time being. It's easy to get around without having to have a car and being fine with

it." Anthony pauses to take a sip of water and then continues. "Let me kind of maybe

advance on it and say one more thing. I knew there were a lot of people who were blind

and disabled in the Bay Area, but I really was, and even outside of the consumer

community, consumer group community, I work with a lot o f blind people who are doing

it on their own, employed, self-employed or just living on their own and doing it and

doing well and I was really influenced by just the number of blind people."

As mentioned several times before, The San Francisco Bay Area, primarily

Berkeley, has been known as the place where the disability rights and independent living

movements began, paralleling other civil rights movements. As previously illustrated,

many of the informants moved to the Bay Area or have stayed in the Bay Area because of

the available services, including the public transportation. Sixteen of the informants said

that the transportation is one of the main reasons they are in the area. The public

transportation system includes BART, MUNI trains, CAL trains, street cars, cable cars,

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buses, and ferries, not to mention the private cab and limo services. The BART stations

are very accessible, so Michael, David, Gloria, Emma, or any o f the informants who

learned a little Braille can read the signs on the walls and discover which trains pull up to

certain platforms, and automated announcements can be heard through the loudspeakers

when trains are approaching, like "Nine car train for Richmond in two minutes."

Similarly, many of the buses in the Bay Area have started providing audible

announcements of the busstops. For example, when the bus stops to let Simran off so she

can get her favorite nutella chocolate gelato at the gelato shop, the automated voice says,

"Shattuck and University.” However, sometimes it is hard for individuals to know which

bus to get on, as they cannot read the signs on the sides of the bus, so they ask sighted

individuals to help by reading the bus schedules or announcing the buses that pull up to

the curb. While a few informants can occasionally make out the letters that spell out the

name of the bus, most ask for help. Anthony and August have found that carrying their

canes helps in awkward literacy moments.

ANTHONY: When I'm in crowds or in malls or at airports or even when I go to


the store, even though I know my surroundings, I still use my cane because
sometimes there's glare, there's cracks in the sidewalks, there's baskets that are
turned over, so it's more of a necessity than not a necessity.
PRISCILLA: Well, also for me when I still had a little sight, when I'd go into the
store and ask prices, they didn't know why.
ANTHONY: Right. Or the grand example is when you get on a bus and you ask,
“Hey, what number is it?” “Well, can't you see?” “Like no.” “Well, where's
your cane?” So it kind of makes things easier in that sense.

Like Anthony, August has had problems with being able to access signs in the

community. She has started carrying an identity cane so that people in the public will

know she cannot read. She explained:

It's just an ID cane so that they know that you have some kind o f disability
because a lot o f the times when I like get on the bus, I'm like, “What bus number

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is this?” Like this one time, I got on this bus and I had no clue where I was. I
was like downtown somewhere and I was like, "What bus number is this?" and
she was like, "Why do you want to know?" and I was like, "Cause I can't see.
Could you please tell me," and she was like, "Oh my gosh," and she told her sons
to tell me and it was so rude and I felt it wasn't my fault because I was blind cause
I'm someone who like blames everything on myself, so it just really sucked and it
was really amazing, but when I used the ID cane, I got so much attention for
being blind. I was just so amazed and shocked how people could appreciate you
for having a cane, but when you say that you’re visually impaired or something,
they won't give you the time o f day unless you have some kind of proof.

Besides sometimes being unable to navigate the transportation system, a few

informants feel as though they miss out on certain visual and cultural literacy

experiences. Yoko said she misses seeing store signs because they helped with her

English and spelling. Gloria said, "There's so many print words everywhere, on signs

and on the streets and even on the sidewalk comers. All these places, there's words

words words and if you don't see it, you don't know it's there." However, new

technologies are helping many of these blind informants feel as though they are more part

o f their community. Three of the informants own accessible Global Positioning Systems

(GPS) with more than 13,000,000 points already stored in the data base, much like the

systems used in automobiles. However, unlike those, blind individuals download the

GPS to portable notetakers, such as Voice Notes, and then program in their destinations

or the information they want to know about their community. The total cost o f a talking

GPS is around $3000, including the notetaker and the program, which may be one of the

reasons why only three of the informants own one. Michael thinks his GPS was worth

the money. He said:

I will know instantly 26 feet away from here there's a shoe store and then an AtT
store and then there's an ice cream shop, so you can set it to point out what's out
there and I discovered like I did last time that kiddy comer to us and just down
that street, Center Street, there's another cafe. I didn't know there was another
cafe. I like this cafe well enough, but maybe one day I'll want to change. For

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many blind people, if you're serious about wanting to be involved in your culture
and your community, you're always saying, "What's around here? What's around
here?" If you are in a car with a driver, you can have it announce points of
interest as you go by. All o f a sudden you'll see, oh there's a restaurant here.
There's a winery over there. There's a school there. There's a forrest wit a
campground there. It just announces and you start to put together in your brain
the best damn map o f your community you ever had, things that you never knew,
and the sense of time as you travel through the map is a really powerful way of
learning.

Many o f the informants use the technology that is available in the San Francisco

Bay Area. For example, several of the financial institutions now have ATMs with

speech. Blind people can go to a machine, plug in a pair of headphones, put their card in

the slot, and listen as the machine tells them what to do. Of the 30 informants, 16

regularly use talking ATMs. Marcus uses talking ATMs and teaches other blind and

visually impaired people how to use them, as he fears "they will disappear if we don't use

them." Gloria appreciates the talking ATMs, saying, "I have access to getting my own

money with not having to give my pin number to somebody." David and Yoko both use

talking ATMs, but they complain about the sound quality. David said that the ATM he

uses in downtown Berkeley is "so loud that everyone around can hear when I enter my

pin number." On the other hand, Yoko said, "The problem is that the volume is not big

enough or loud enough, but it's on San Pablo Avenue, so when a car is coming by, you

can't hear anything."

On the other side, 14 individuals would rather go into the bank and deal with

human tellers. Simran said, "I hate ATMs and so I try not to get money out of ATMs

when I can help it. I try to go inside the bank cause I don't trust them. Once I wanted

money from an ATM and I like asked for 60 bucks and it didn't give it to me and it

printed the receipt saying that it had, and I called up the bank about it and I knew this was

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the kind o f thing that happens at an ATM." Bobbi's explanation was simpler. She said,

"I'm so old that I like to go into the bank and make sure I’m getting the bills I want."

Only a few o f the informants use public libraries to check out books, though

several have library cards so they can access the online documents using their computers

at home. The San Francisco Public Library also has talking elevators and a special

section for blind and visually impaired people, which includes books on tape and CD and

movies with descriptive video. A few years ago, the library installed a talking sign

system for blind and visually impaired card holdres. Qualified individuals are supplied

with portable receivers that pick up details from transmitters that give directions and

provide information from print signs, such as "reference desk ahead.” O f the 30

informants, none use the talking signs, saying the system is not practical. Jean offered

her opinion in the following passage:

I think talking signs are the biggest bunch of nonsense. First o f all, they don't
work terribly well. The ones at the library for example where I volunteered a lot,
when the light comes in a certain way, they signal a place different from where it
is, but even the ones that work well, if you have normal movement with your cane
in your right hand and if you're not carrying anything at all, and you have
something in your left hand that you have to move back and forth, it's very
difficult to coordinate those two movements and get anywhere. I don't know a
single person in the O and M field who has tried to educated anyone to do that, so
they must think it doesn't work very well either. I think the talking signs are one
o f the things that are cities are talked into and everything because it makes them
feel good and they can say we've got all these talking signs for the blind.

As mentioned in the first section, six of the informants order their groceries

online. Several others buy groceries at the stores in the community. Akiko works with a

volunteer who drives her to the store and helps her shop for the items she needs. Eight of

the informants walk, take a bus, or take paratransit to a store and ask for help from

customer service. As mentioned in Chapter 4, Adelle creates a Braille grocery list and

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drags a cart to the store four blocks away from her apartment building. She said, "The

baggers are used to helping people who need help finding things on my list." Others hire

their own readers/drivers, as they don't trust that they will get a helper who speaks

English.

O f the 30 informants, 16 belong to blindness organizations and employ various

literacy skills to perform tasks. For example, Adelle takes minutes for the chapter of a

local blindness organization. She tape records the meetings, takes the tapes home,

transcribes them on her computer using the transcription machine she used in her job as a

medical transcriptionist, and brailles out the important points for the next meeting when

she reads the minutes. For another meeting, Heather takes notes on her Braille Light with

a refreshable Braille display and reads them back at the meeting the next month. Sam

sends out email reminders about meetings, while Jean writes newsletters for another

organization. Others have spent time writing articles, letters to legislators, and emails to

various blind lists. Daniel, upset with the way his own schooling turned out, keeps an

online journal that other blind people can read, including younger blind kids he worked

with at camps for blind children and teens. Jean, Bobbi, and Smoky have written articles

on the importance of Braille literacy. Even though Jean no longer works for pay, she

continues to design programs to teach parents of blind children how to teach Braille to

their blind kids.

Six of the informants do volunteer work at various places. Sava has participated

in several volunteer activities in the Bay Area. She has been to a farm where "chickens

chased [her] and it was awful." She has assembled Braille versions of Tibetan scriptures

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to send to refugees. Currently she is cataloging all the Braille books at the Lighthouse

for the Blind in San Francisco.

In a speech at the California Association of Blind Students (CABS), Sava

described Building with Books as "a national nonprofit organization that encourages

youth to make a positive difference in their communities and beyond." In her speech,

which she read using Braille, Sava talked of her trip to Mali where she woke every

morning to the sound o f "a rooster crowing, donkeys fighting, a dog barking, the

pounding of millet, or a child crying." During the day, Sava helped build the school. She

"sifted sand, mixed cement for the bricks, made the bricks, helped dig the latrine, and

drank lots o f water" in far above 100 degree temperatures.”

Several o f the informants have been active in Bay Area Organized Recreational

Programs (BAORP). Daniel, Gloria, Luis, and Marcus participate in goal ball, a game

originally designed in 1946 to help rehabilitate blinded veterans. The game uses a

rubber ball with bells and has six players on each team, all players must be blindfolded

so that no one has any sight. Similarly, several informants at one time or another have

been active in Connecting through Dance, including Akiko, Gloria, Marcus, and Michael.

After learning the five basic dance positions and the components of dancing, the blind

individuals are trained in Latin, ballroom, swing, and other partner dances.

Four informants said they try to stay away from activities with other blind people.

When I asked Jeffrey if he uses Newsline for the Blind, which is partly sponsored by the

National Federation of the Blind, he said, "As far as the whole community goes, like

nobody really knows who I am. I'm not part of NFB or ACB or any o f that. I just do my

own thing and I hate to be drawn into those conversations. It's like I don't know, I don't

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care. Leave me alone and go away.” Similarly Maria said she doesn't participate in

activities specifically for blind individuals, as illustrated in the following dialogue:

PRISCILLA: I got your name from Heather. Everybody seems to know


everybody here in the Bay Area.
MARIA: My husband says like that, "In that community they're so ruthless to
each other." I guess he was talking to his coworkers. "Oh my God. You'd think
they'd want to support each other and help everybody out, but not. It's like they're
out to get each other."
PRISCILLA: In the blindness community you mean?
MARIA: Yeah, cause you know I've told him like stories. I'm not really
connected in the community, so it's just like some of the stories and my husband's
like, "Oh my God," you know.

On the other hand, 26 of the informants describe a strong sense o f community

among the blind in the Bay Area. As already mentioned, 16 belong to blindness

organizations or groups and six participate in sponsored blindness activities, but many

more get together with other blind individuals and create their own entertainment, such as

parties and picnics at people's houses, hikes from San Francisco to Orinda “just for fun,”

organized dinners at Mel's in downtown Berkeley and The Fish Market on Fisherman's

Wharf, tours of Alcatraz and the Jelly Belly factory, shopping trips at the Powell Street

Mall and Hilltop in Richmond, and trips to one of the many movie or play theaters,

including the Orpheum to see the audible described version of Wicked. When I attended

Wicked with Simran and a few other blind individuals, Simran asked a lot of questions

before the show started, because she had moved to the United States at age seven and had

only seen the movie a couple of times before she knew English very well. How many

witches are there? Which one is the wicked witch? Half way through the play, I leaned

over and whispered in Simran's ear, "You do know what a Munchkin is, don't you?"

Simran leaned back to me and said, "Yeah, isn't that like a chipmunk?" At that moment, I

realized the difficulties that blind people have reading the cultural world.

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While the people who participate in the blindness community in the Bay Area can

have a lot of fun together, they also join forces in desperate times to help each other.

When Luis's wife had a baby, the child services agency told them that they could not take

their baby home with them unless they had a sighted person with them 24 hours a day.

Both Luis and his wife signed the agreement, not understanding what it meant. First, the

document was not available in Braille or another alternative format. Second, both parents

use English as their second language. Third, the couple had been without sleep for more

than 24 hours. While part of the problem stemmed from lack of sleep and lack of

accessible documents, this type of treatment was illegal. One newspaper article read,

“What should have been a joyous occasion for the parents turned into the worst

nightmare the parents could imagine.. .the father, frightened and angered by the actions

of Child Protective Services.. .turned to his friends in the blind community.” When the

word got out, it spread through the blindness community through phone calls and almost

every blind list serve in the country. Hundreds of blind and visually impaired individuals

from the Bay Area, as well as from other parts of the country, offered their help by

calling and sending letters to social services. A blind lawyer in the Bay Area offered her

legal advice, free of charge.

PRISCILLA: I'm just wondering if these people, as far as, do you think that if you
had been able to sit down and read the forms that this wouldn't have happened?
LUIS: I don’t know, but in the situation we went through, cause having an
induction for more than 24, maybe 30 hours, 35 hours, having a situation like that
and when they come and show their faces like, "Hey you. We want to do this."
Well, the first thought is why and did you get what I had to do now. Why it has to
be like this? And I think if they give us a chance to think about more and maybe
read those things without any preparation, anything like that, you know, I think I
can understand the letter a little bit more.
PRISCILLA: So they were basically saying that you had to have someone with
you to take care of the baby because o f your blindness, right?
LUIS: Uh huh.

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PRISCILLA: I read all the articles, but that lasted what. A week? A couple of
weeks?
LUIS: Yeah, we got it resolved.
PRISCILLA: Didn't they basically say they were wrong?
LUIS: Well, as far as I know, the next day, this meeting with the hospital and SSI,
and they declined the paper. They didn't tell me they were wrong. They never
said well we're wrong or things like that. The only thing I can remember is that
they declined the paper. They said, "You know what? We're going to start a new
meeting and we're going to decide from the meeting.” And we had an advocate.
She was tough. I think she was for us at that time and I think we should thinking
about that. Just our religion, we think she was our angel for us cause she helped
us a lot. The same day on Saturday, which was the fourth, she goes, “You know
what? We're going to leave with the baby. We have to get out o f the hospital
today with the baby,” and that's what we did. We took our baby home.

This section shows the ways that blind and visually impaired individuals function

in the San Francisco Bay Area, using the transportation and the services that are

available, but it also illustrates the ways these individuals join forces in times of crisis by

networking with others. While many of these informants did not know Luis or his wife,

they acted together out o f a network of support. People took on different roles. The

lawyer read the paper that Luis and his wife had signed and read documents on their legal

rights. Several informants in this study wrote letters to the Child Services Agency, while

a few Spanish speaking informants called to offer their support to Luis and his wife.

Others sent in letters to the editor in response to the newspaper articles. The community

joined together using various literacy skills and made a difference.

Summary

This chapter illustrates the ways these blind and visually impaired informants use

their literacy skills in their everyday lives. In their homes, they do a variety of activities.

David finds the CDs he wants to loan his friends because he has organized them with

Braille labels. Akiko corresponds with her parents in Japan using Email and written

letters with the help o f a template. Adelle writes political letters and Jean and Bobbi

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work on articles for newsletters. Dawn reads books for enjoyment, while Jeffrey reads

books and articles that can be used for his job as a financial consultant. Abdul, George,

David, Gloria, and others use the Braille signs in the BART stations. All the informants

have found ways to participate in everyday literacy practices in their homes and in the

community.

In spite o f the literacy activities the informants participate in, at times the lack of

access discouraged a few. For example, there is Jean, trying to open her bottle of pills,

something that most sighted people would take for granted. Others wish they had better

reading and writing skills. Claire has fond memories of being read to by her mother and

wants to be able to read to her son. Luis was not read to but knows the importance and

wishes he could read to his child. However, the lack of these skills do not define the

quality o f their existence, nor their identities as adults. Rather than reading, Luis tells

stories and sings songs to his son in Spanish. He has found ways to pass along his

literacy practices.

Perhaps the debate mentioned in Chapter 4 needs to be revisited. Like most of the

informants, I agree that Braille is important in the lives of blind and visually impaired

individuals. However, blind people reading Braille or listening to texts perhaps should

not be our main concern. Instead, we should be asking if blind and visually impaired

individuals are negotiating their way through life. If the examples of stories from the

informants in this chapter are any indication, I would have to say they are.

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CHAPTER 10

LITERACY IN THE LIVES OF THE BLIND:

CONCLUSIONS

I conducted this study o f 30 blind and visually impaired informants in the San

Francisco Bay Area in order to trace their literacy practices over time, as well as to

understand the ways literacy works in their everyday lives today, using the following

questions as a guide:

1. In what ways has literacy changed for these blind individuals over time,

especially with new technologies?

2. How did these blind individuals acquire the skills of literacy, from whom, at what

age, under what circumstances, and for what reasons?

3. How does literacy for these blind individuals vary with age, socio-economic class,

and culture?

4. Which literacy tools are used in specific settings, including home, community,

school, and work?

5. How have literacy experiences influenced the self-identity of these blind and

visually impaired individuals?

While I did not set out to look at this issue, the Braille/print debate came up again

and again in the interviews with the informants. This makes sense, for when discussing

literacy for the blind, Braille is at the front and center. However, while literacy was

viewed as the skills of reading and writing several times in the chapters, this study

attempted to move beyond that narrow definition of literacy as reading and writing to

discover the ways that blind individuals use literacy in their lives, as well as who decides

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when and what they are learning. Still, I must note once again that without prompting, 24

o f the informants said that Braille is extremely important for all blind individuals, even

though only 14 of 21 learned it as children and only 2 have learned it as adults. The other

eight claimed they know the importance because it is missing from their lives. Also,

when I asked people about their literacy experiences, most assumed I meant reading and

writing in school. They did not consider literacy at home, at work, or in the community

as important. Others automatically assumed that I meant the number and types of books

they read. A few either devalued the books or magazines they read or assumed that I

would devalue them. For example, Heather said that her family read “all the cheesy

trashy James Michener novels.”

This dissertation provided just a glimpse into the lives of the 30 blind individuals.

Rather than focusing on just a few informants, I wanted several profiles that would

provide not only a rich diversity but also the shared experiences. Chapter 4 historically

traced literacy in the lives o f four informants and illustrated the ways new technologies

altered literacy for these informants but did not alter the attitudes of the people around

them. The next three chapters explored the three main sponsors of literacy in the lives of

the blind, including family members, teachers, and rehabilitation professionals. Many of

the informants felt as though their literacy opportunities were hindered rather than helped

by these sponsors. Chapter 8 looked at the literacy sponsors, or lack of them, in the lives

o f the informants who immigrated to the United States. The last chapter jumped into the

present to see how literacy worked in the everyday lives of the blind at home and in the

community.

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In this chapter, I summarize the findings by looking at issues of access, control,

and power (Brandt, 2001) and expand on these ideas. The first section focuses on

literacy for these informants, past and present, mostly looking at access. In the next

section, I discuss literacy sponsors, or those who have some control over literacy for the

blind, and what needs to be done in order to encourage success for blind and visually

impaired individuals. Finally, I conclude with my reflections on this research.

Looking Back and Ahead at Literacy

Throughout history, people have been denied access to texts, academics, and

written language, knowing that these things mean power and freedom (Luke, 1994;

Street, 1995). Two hundred years ago, slaves were not taught to read and write for fear

they would organize and over power their masters. In Chapter 7, Daniel compared his

own life to that o f Frederick Douglas, as a slave. He said, The way they kept slaves was

by not teaching them how to read and write. You’re a slave if you don’t know how to

read and write, a slave to the people who are around you.” However, one must question

this comparison, as several efforts have been made to teach the blind to read and write

since Valentin Hauy opened the first school for the blind in Paris where Louis Braille was

a student. Still, intentionally or unintentionally, the blind have been denied access to

literacy at times throughout history.

The informants in this study illustrated some of the changes that have occurred for

blind and visually impaired individuals over the last 80 years, especially regarding access

to literacy. From the time when Adelle learned Braille using a slate and stylus at a school

for the blind in the 1930s to the time when Beth sat in her public school classrooms with

her Braille Note with a refreshable Braille display, access to literacy has increased. For

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example, Adelle experienced an increase in access to books in Braille and on reel to reel

tapes after World War I when veteran’s pushed for books to read, since most would not

be going back to work. George attended a residential school just ten years after the

Brown versus the Board o f Education case when the schools for the blind were the first to

be integrated. He used Braille and books on tape. If he had attended school ten years

earlier, he would have struggled to read the used, worn-down Braille books the

residential schools for White children had thrown away. Beth began school during the

computer age and could download the most recent books on her computer. The literacy

practices o f these individuals reflected what was going on at the time when they were

using literacy (Barton & Hamilton, 1998, p. 259). However, while access to literacy

seemed to improve over time, some of the changes in technology brought about new

challenges (Brandt, 2001).

In the last 20 to 30 years, mainstreaming and computer technology have altered

the formal literacy learning experiences for the blind. Those who attended schools for

the blind learned Braille with slates and styluses, as in the cases of Adelle and George,

while those who attended public schools before the computer age learned to read using

Braille, as in the case of Jean, large print, as in the case o f David and Anthony, or nothing

at all, as in the case of Bobbi. In the last ten years, the students with some sight were

encouraged to read print with magnification programs and listen to audio texts, as in the

cases o f Daniel and August. On the other hand, students who had very limited or no sight

and learn Braille, like Sava, Beth, and Joseph, downloaded their texts to notetakers with

refreshable Braille displays and participated in their classes with their sighted peers.

These new technologies provided access to literacy and to spending more time in the

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regular classroom. As Joseph said, “Basically technology brought me where I am today,

a lot o f it has.” While Joseph, Sava, and Beth sat in the regular classrooms and read their

books with their Braille displays, August struggled to read large print, which often

resulted in headaches, causing her to leave the classroom and go to the Resource Room,

where she had to share one CCTV with three other visually impaired students.

Like in schools, changes took place in employment. With the introduction of


ft i
mass production in the first half of the 20 century, many trade-based jobs for the blind,

such as caning chairs and making brooms, were eliminated, which caused a shift from

schools teaching trades to schools teaching the skills of literacy. While Brandt (2001)

claims that most jobs today are literacy based, the unemployment rate for the blind has

not improved much in the last 80 years, not even in the last 10 years with new accessible

technologies that provide access to written documents, such as screen reading programs

and scanners. With the increase in jobs that rely on computer skills, one would think the

unemployment rate for the blind would decrease. All 12 of the informants who were

employed at the time of this study said they used computers for the majority o f their

work. All 30 informants owned computers and all but two were fairly proficient on them,

indicating that more than likely most blind people who are in school or clients of rehab

own computers. Still, at more than 70 percent, the unemployment rate for the blind

remains almost as low as it did in the first half of the 20th century, when it was estimated

that only 16.8 percent were gainfully employed, leaving 83.2 as unemployed (Best, 1919,

p. 80). The economic conditions for the blind have not improved much in the last 80

years, since the initiation of the Social Security Act of 1935. Similarly, the Americans

with Disabilities Act (ADA) of 1990, which coincides with the increase in accessible

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222

technology, did not result in an increase in the number of blind working. However, ADA

caused changes in the public sphere.

The Americans with Disabilities Act changed the political and social lives of

persons with disabilities, as it led to accessibility in the public arena. As illustrated in

Chapters 4 and 9, several o f the informants became very involved in their community.

As Jean said, “[ADA] certainly intensified the awareness of society that there are people

with disabilities around and that they have to have some kind of consideration and you

can’t just forget that they’re there.” Many of the informants have used the accessible

technology in the community, as well as in their homes. Dawn said she takes advantage

of all the literacy opportunities she can, including downloading whatever she can. She

said, “I love to read. I love Braille. I love listening to books. I feel like really powerful.

The information age has made me feel like so much more powerful as a citizen.”

Anthony said that with the technology, blind and visually impaired individuals

have moved ahead o f sighted people in reading materials. He explained:

I think my blindness has contributed to me being able to access more things today
in modem day by being more aware than most people who are sighted that there
are other ways of accessing media in just regular print besides newspapers or
newspaper stands or libraries ... I talk to people all the time who aren’t visually
impaired or have print disabilities who don’t know about that and say, “Wow. I
didn’t know you could do that on a PDA or other things,” and I think that speaks
to the last ten years.

While more books are available to the blind with new technologies, like

audible.com and Book Share, equipment for accessing the texts can cost a lot of money,

particularly if schools and rehabilitation agencies are not willing to help, as seen in the

case of David in Chapter 7. While the cost to use books on Book Share is minimal, the

cost o f the materials to access the documents, including a computer and a screen reading

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program, not to mention the extra cost of a portable notetaker or other device to listen to

books outside of the home, can be very expensive. While schools or rehabilitation

services may be willing to help with the costs, what happens if blind individuals are not

students or clients o f rehab, as in the case of Maria in chapter 7 who had to decide

between equipment to access print documents or shoes for her children? Many blind

people would not be able to afford the technology without financial support. Still,

technology has helped blind individuals access print materials

At home, at school, at work, and in the community. The blind informants have

been able to negotiate their ways through their everyday lives with their literacy

practices, as seen in Chapter 9. However, the changes in technology did not change the

attitudes of many people, including some parents, teachers, and rehabilitation

professionals, which is the focus of the next section.

Future Sponsors of Literacy

In addition to looking at the changes in literacy over time, it was important to look

at the sponsors of literacy for blind and visually impaired individuals, the people who

controlled access to literacy for these informants. Many of the informants for this study

did not have encouraging literacy sponsors during their childhoods, the parents and/or

teachers who should have been pushing them to reach their full potentials. Instead,

concepts of normalization (Foucault, 1977), often led to isolation and exclusion (Gore,

1998). The ideas of normalization were ever-present in the lives of blind and visually

impaired children, as seen in Chapter 5 and 6. Because society viewed blindness as

deviant from the norm, these informants spent a lot of time on the edge. Sometimes this

marginalization meant sitting watching television until age eight, rather than playing

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224

outside with friends, going to school, or living life. Other times, this marginalization

meant sitting off in a comer trying to read a book under a CCTV, one or two print letters

at a time.

With the ideas o f what is considered normal, some parents rejected Braille

because o f its connection to blindness, as seen in the case of Dawn’s mother. Sava

resisted using Braille at home and in school because she had been influenced by her

family’s attitudes o f blindness as a disease that needed to be cured. While Heather, Jean,

and Gloria learned Braille from tutors or itinerate teachers who came to their homes, only

Emma and Akiko learned Braille from their parents. The others learned print or nothing

at all.

Most of the informants who learned print from their parents or other family

members thought o f reading and writing as a frustration rather than as a freedom in their

lives. For example, Daniel remembered trying to read a children’s book at his

grandparents’ house and the feelings of frustration associated with that experience.

Jeffrey recalled the arguments over the way he should be taught to write. Even if parents

did not deliberately try to discourage their children from reading and writing, that often

happened. Only Emma and Akiko, whose parents got involved in their Braille education,

and Gloria and Anthony, whose parents encourage their literacy learning in school, one

for Braille and one for large print, felt accepted in their families, as though they were

equal to their sighted siblings and/or peers.

As indicated in Chapter 5, many of the informants knew that their parents had

lower expectations for them than for their sighted siblings. This was demonstrated in

several ways. Jean’s parents thought a blind music teacher was successful because she

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225

could dress herself. Heather's parents thought music would be a good career for her to

pursue. Simran's parents would have been happy if their daughter got a job and lived at

home with them for the rest o f her life. While Abdul succeeded in life, at least in my

view, his parents instilled in him the idea that a blind child was not a normal child, not a

wanted child.

In Chapter 6, even when blind students learned the most appropriate medium for

reading and writing, they were often excluded from literacy activities and events. Since

the time of mainstreaming, many researchers have tried to find explanations for why

blind children fall behind their sighted peers. While technology, such as notetakers with

speech or Braille, allows more active participation of blind children, Chapter 6 revealed

the ways blind and visually impaired kids are still being excluded, including August, who

still attends a public high school. Both in and out of the classroom, she felt left out.

Special Education services have been under attack from the public, as well as

parents, in the last decade, and the problem is growing. However, rather than attacking

and criticizing, we need to be looking for answers. What can be done when there are not

enough VI teachers to teach Braille to blind children? While Sava, Beth, and Joseph

learned Braille, what about the thousands of blind kids who live in rural areas where the

schools lack the resources and knowledge about teaching blind children, as in the case of

Dawn? And what about the parents who agree with the school administrators who tell

them their children have enough sight to read print, as in the case of Daniel?

Like parents and teachers, many rehabilitation professionals do not understand the

literacy needs o f the blind. Rehabilitation professionals will provide equipment and

tuition for school, but not incorporate good training and mentorship. As ten informants,

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including Anthony and Michael, said, the clients need a combination of the three.

Unfortunately, according to most of these informants, good training using nonvisual

techniques is not available in the Bay Area. Where would Michael be today if he hadn't

listened to the Braille Monitor tapes and found out that he deserved more than the

rehabilitation services were offering? Would he be spending his time working for less

than minimum wage in a sheltered workshop as most blind people did before the 1950s

and as some still do today? Or would he be sitting down by the Bay, a fishing pole in one

hand, a tape copy o f The Bible in the other, waiting for his Para transit ride to show up?

With blindness training using nonvisual techniques, appropriate equipment, and

mentorship from positive blind role models, Michael went back to work as a journalist

doing his job with much more ease. If rehabilitation professionals would look at these

three components as absolutely necessary in the rehabilitation process, perhaps more

blind people would be working today.

In Chapter 8, the narratives of the nine informants who immigrated to the United

States for better lives illustrate the ways their literacy changed, as well as the effect their

previous literacy experiences had on them. Emma, Akiko, Luis, and Claire went from

countries with no special education programs to a country with an abundance o f services.

Emma and Akiko learned Braille and believe the lack of special education services in

their home countries actually benefited them, as their parents took active roles in their

literacy education. Emma said that she learned advocacy skills through her experiences

in Ireland. She believes that aids in the classrooms do too much for blind children in the

United States and prevent them from learning the skills of advocacy. Akiko argued that

parents in the United States depend on the special education services to educate their

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227

blind children rather than working with the schools to ensure that the children succeed.

On the other hand, Luis and Claire believe the lack of special education services in

Mexico not only motivated them to move to the United States but also made their

experiences more difficult once they had relocated. Luis not only had to learn English,

but he also had to learn the blindness skills that he missed in his home country of Mexico.

At age 18, he was learning skills that many blind children in the United States learn in

kindergarten.

This study revealed some of the ways sponsors can help or hinder literacy

learning. Often childhood literacy practices follow people into their futures, both good

and bad. Emma said her mother influenced her success in school and in life. Gloria

described her excitement for learning because of her supportive VI teacher. Beth’s

teacher pushed lots o f books and she became enthusiastic when she found books she

liked, including the Goosebump series during her childhood and the Harry Potter books

today. Smoky felt fortunate to have received the help he needed from rehabilitation

services in the 1960s when the services in the Bay Area were better and training was

based on nonvisual techniques. These informants had encouraging literacy sponsors and

seemed to move on with their lives. On the other hand, Daniel struggled with literacy

and still struggles with reading today.

Besides family members, teachers, and rehabilitation professionals, other literacy

sponsors existed in the lives of these informants. Gloria’s VI teacher entered her in the

Braille Readers are Leaders contest, sponsored by the National Federation of the Blind,

which motivated her to read 62 books in a month, starting alphabetically with the letter

A. Claire received letters from an aunt in Los Angeles that encouraged her to move to

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the United States in order to learn alternative skills o f reading and writing, including

computer skills, to regain her independence. The Hadley School for the Blind, which

Ayella found through a radio ad for the American Printing House for the Blind while she

was still living in the Philippines, helped her learn Braille and computer skills without a

computer. The National Library Services for the Blind became a literacy sponsor for

almost all o f these informants, as they provided books in Braille and on tape, including

for Adelle who spent long, boring summers at home, for George who hoped they would

mistakenly send him more books on sex, for Jeffrey who is still spooked by The Shining,

and so on. The American Consulate was perhaps Heather’s most prominent literacy

sponsor, as they sent hundreds of Braille books to her family in Saudi Arabia. After

Michael received training, a few blind people became sponsors by taking his calls late at

night and talking him through the steps o f using programs on his new computer with

speech.

In spite of some of the sponsors that positively influenced literacy for these

informants, many blind people lack sponsors in all areas of their lives. 7hose without

supportive parents or teachers or rehabilitation services have struggled, as in the case of

Luis whose father devalued education, especially an education for a blind person.

Because special education services did not exist in Mexico and his father sometimes did

not have the money for the private school for the blind, Luis’s literacy learning was

sparatic, and he cannot read or write very well today. At age 32, Luis has never held a

job. While he has found joys in being a parent, he believes he would be a better father if

only he could read to his son.

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Perhaps at times in this dissertation, especially in Chapter 5 on literacy at home, I

seemed to judge parents o f blind children. I do not wish to do so, as many of them do not

know what they can do for their children (Craig, 1996). Hopefully they will read this and

leam. On the other hand, teachers and rehabilitation professionals should know how they

can help blind and visually impaired children and adults. They should recognize that

print doesn't work for most blind individuals over the long term. They should realize that

blind individuals can succeed in school, in work, and in life if given opportunities,

including learning the most appropriate medium for reading and writing as children and

receiving training, equipment, and mentoring as adults. Parents and other family

members, teachers, and rehabilitation professionals need to push blind individuals to

control their own learning and therefore their own lives. Rather than controlling literacy

for the blind, they need to provide equal access, high expectations, and tools of

empowerment, which will lead to opportunities, so blind individuals can participate as

full members of society. They need to draw on Vygotsky (1993) who writes, “Social

education will conquer physical handicaps. When this occurs, probably no one will

understand us if we say a blind child is defective. Instead, they will say that a blind

person is blind and a deaf person is deaf and nothing more” (p. 84).

Personal Reflections on this Project

August 8, 2005—

Earlier today I met with Sava, a 17-year-old girl whose parents are originally from
Eritrea. Coincidentally I heard of Eritrea for the first time last week when I was
talking to a friend o f mine from Ethiopia. Apparently his wife is from Eritrea and
he told me that the two countries have always been in conflict. I was glad that I
had the conversation last week so I didn’t have to admit to Sava that I had never
heard of it before.

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Anyway, we met in the downtown Berkeley BART station, just outside o f the fare
gates. It was hard to find her, since neither of us can see and she has a very light
tap. Plus, I learned during the interview that she has a slight hearing disability.
Finally, the gate agent brought her over to me. When we got to the top o f the
escalator, Sava asked if she could take my arm to walk down the street to Mel’s,
as she said her travel skills aren’t that good. I didn’t mind, and she took my arm,
the blind leading the blind.

At my request, Sava and I sat in a booth in the back. I thought the music from the
jute boxes wouldn’t be as loud back there. I was wrong. Throughout the entire
interview, tunes from the 70s and 80s blared through the place, but I digress...

When the waiter came to our table, he asked if we wanted Braille menus. I told
him that I didn’t need a menu, as I knew the menu by heart. In part, this was true.
In part, I didn’t want to get the menu and have to pretend I could read Braille, and
I didn’t want to have to explain to Sava why I couldn’t read Braille. Why do I
always do this to myself? Why do I always feel like the bad blind person because
I can’t read Braille? Here I am, interviewing this girl about her literacy
experiences, and I’m worried about my Braille skills?

According to Barton and Hamilton (1998), people take on different identities in

different literacy events (p. 15). The literacy event in the above journal entry - reading,

or in my case not reading, a menu in a public restaurant —brought up the identity I have

claimed for myself in certain situations, the identity o f myself as a bad blind person, the

blind person who cannot read Braille. As a person who struggles with my own literacy,

and apparently sometimes with my identity as a blind person, the conversations with

these informants taught me a lot about literacy in my own life, as well as in their lives.

However, in reflecting on this project, I have to wonder if I can separate the two.

When I started this research, I felt as though I was hovering overhead, observing

this community from a close distance, not quite on the outside, not quite on the inside,

just sort of there. When I began the interviewing process, began corresponding with the

informants by phone and email, and began bonding with them at dinners and parties and

theater productions, I became an insider, a researcher looking at my own story, at my

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own life through the lives o f others. While the stories varied from person to person, there

was an overwhelming sense o f common identity —feeling inferior for not reading Braille,

feeling abnormal from family members and peers, feeling excluded by teachers in

classrooms, feeling forgotten by employers. All of the informants eagerly volunteered

for this project when they realized this was their chance to expose the problems with

literacy in the lives of the blind. They not only wanted to help themselves, but they also

wanted to help future generations of blind children. Through their several stories, I felt

as though I was telling one tale. While the informants came from very different

economic, educational, political, and social backgrounds, they shared common literacy

experiences.

Barton and Hamilton (1998) discuss the idea of "rehearse stories," which they

describe in the following passage:

These are the stories which it is apparent they have told before, and probably
many times. They may be repeated in different interviews, using similar words
and phrases. Rehearsed stories are important because they are part of an identity
and intrinsic to the way that person presents themselves to others. (Barton &
Hamilton, 1998, p. 71)

Sometimes when listening to the stories of the informants, I heard words and

phrases that I had heard before, another place, another time. The voices were different,

but the words were the same. Young, old, rich, poor, Black, White, employed or

unemployed, many of these informants were sending the same message. My hope is that

the ways these stories informed me might also inform others. For example, these stories

should challenge the parents, teachers, rehabilitation professionals, and even the blind

themselves to make change. I think back to Luis and the days following the birth of his

son. Blind people from all over the country used their literacy to send letters, to make

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calls, to initiate change. While the Child Protective Services would not admit they had

been wrong, they backed down and Luis and his wife took their baby home. That battle

lasted only two days, but still I believe this one example illustrates the power of the blind

and the prospect for hope. Like Luis, these informants want their stories to be heard, as

they believe as I do, that the blind are the experts but that not enough people are listening

to them. It’s the year 2006 and blind children are sitting in classrooms doing nothing

while their sighted peers work on literacy activities. It’s the year 2006 and 74 percent of

the blind are unemployed. It’s the year 2006 and some parents treat their children as

though they have a disease, as though they are less than their sighted siblings. It’s the

year 2006 and these informants believe, as I believe, that it is time for people to listen to

our stories, that it is time for change.

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APPENDIX A

INFORMANT INFORMATION

PSEUDONYM: Adelle

BACKGROUND: bom 1927 in New York, Caucasian, youngest o f 4 kids, father


carpenter when could find work, mother housewife, not happy childhood,
spent most time at school for the blind except summers and Christmas
PERSONAL: moved to SF to attend Zehn center, lives alone with 2 cats, never
married, other health issues including arthritis, belongs to blindness
organization and volunteers as secretary o f local chapter
EDUCATION: attended residential school for the blind in New York from age 6
to 20, bachelor's degree from Michigan State in music therapy
EMPLOYMENT: music therapist for two years, retired medical transcriptionist
but still looking for transcription jobs for money
VISION: totally blind since birth from what she calls microthalmia
LITERACY SKILLS: learned Braille at 6, slate and stylus, tapes, computer,
scanner

PSEUDONYM: Gloria

BACKGROUND: bom 1980 in North Carolina, Puerto Rican, spent first 3 years
in Puerto Rico, oldest o f 3 kids, father works in transportation, mother
housewife until kids older, both parents Spanish speakers
PERSONAL: lives with boyfriend, very active in the community and in blindness
groups, lots o f energy
EDUCATION: went to elementary and high school in southern California,
bachelor's degree in Social welfare, plans to go back for master's in rehab
EMPLOYMENT: employed in blindness field as an independent living instructor
VISION: Lost most sight at age five from Steven's Johnson syndrome but has
some now.
LITERACY SKILLS: learned Braille at age 5, some print with magnification,
tapes, computers, portable devices, everything she can use

PSEUDONYM: Daniel

BACKGROUND: bom 1981 in California, Caucasian, 5th of 7 kids, 2 siblings


blind, mother blind, father works in electronics but struggling since dot
com, mother works part-time at center for the blind
PERSONAL: lives with family, active in disability programs for kids, active in
blindness community
EDUCATION: attended public school in the Bay Area until high school, went to
school for the blind for three years in high school, student in community
college, 4th-year sophomore, studying rehab services

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EMPLOYMENT: not employed because of school, volunteers for camps for blind
in summers
VISION: Decreasing over time from congenital glaucoma
LITERACY SKILLS: learned print as child, struggled with print, learned a little
Braille at training center as adult, not proficient in either, uses tapes, audio
books, computer

PSEUDONYM: Dawn

BACKGROUND: bom in 1978 in Colorado, Caucasian, oldest of 3 kids, spent


most time in foster care, no information about father, mother does people's
nails, little communication with family now
PERSONAL: has apartment in SF but spends time with boyfriend, not active in
the blindness community, moved to Bay Area to get guide dog and liked it
so came back
EDUCATION: public schools in Colorado, some community college courses in
political science, plans to go back to finish bachelor's soon
EMPLOYMENT: employed in disability field, advocacy for persons with
disabilities, will be resigning soon to go back to school
VISION: Totally blind since very young, had both eyes removed from retinal
blastoma (cancer)
LITERACY SKILLS: learned Braille at age 11, nothing before that, uses
computers and downloads a lot of books and articles, reading all the time,
carries slate and stylus everywhere

PSEUDONYM: Jeffrey

BACKGROUND: bom in Illinois in 1965, Caucasian, middle of 3 kids, mother


teacher, father self-employed and got GED later, Irish Catholic family,
Caucasian
PERSONAL: divorced, lives alone but has girlfriend, not active in the blindness
community, not active in community, hangs out with friends mostly
EDUCATION: Catholic school in Chicago, 3 master's degrees in anthropology,
exercise physiology, and motor development, law degree from Berkeley
EMPLOYMENT: self-employed in finance and law
VISION: Decreasing over time from retinitis pigmentosa, almost no sight now
LITERACY SKILLS: learned print but couldn't read for long, never learned
Braille, Audio only with computer and tapes

PSEUDONYM: Smoky

BACKGROUND: bom in California in 1931, Caucasian, 1 half brother years


older, father cabinet maker, mother typist, adventurous mother who moved
from East to West coast on her own, lived on Walnut farm in Bay Area

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PERSONAL: first wife died from diabetes and was blind, current wife is blind
and teaches Braille, 2 sighted children in their 20s, very active in blindness
community, owns home in burbs, 2 pet dogs
EDUCATION: went to public schools in the Bay Area, bachelor's degree in
physics and other classes on his own later
EMPLOYMENT: retired physicist
VISION: Sighted until 30, now totally blind
LITERACY SKILLS: learned print as sighted child, learned Braille when lost
sight at 30, uses Braille for most, uses computer and tape player

PSEUDONYM: Bobbi

BACKGROUND: bom in California in 1939, Caucasian, only child before


mother died from polio, two half sisters when father remarried, father
worked in SF post office
PERSONAL: married, no children, owns home, active in the blindness
community, spends a lot o f time at cabin in country
EDUCATION: public schools in Bay Area while most in residential schools,
bachelor's degree in English with a minor in music
EMPLOYMENT: retired ESL instructor at nonprofits
VISION: Totally blind since birth
LITERACY SKILLS: nothing until age 16 when learned Braille, before that
family members read to her, mostly uses Braille today, uses computer for
some things including newsletter

PSEUDONYM: Sam

BACKGROUND: bom in Hong Kong in 1967, Chinese, one younger brother,


mother school teacher and father business
PERSONAL: lives with parents who moved to the U.S. in 1990, has been married
for 3 years, no kids, brother also lives with them in SF, member in
blindness organization
EDUCATION: attended boarding school in England after age 12, bachelor's
degree in computer science from SF college
EMPLOYMENT: employed as computer support specialist in a bank
VISION: Sighted until adult, now almost totally blind from glaucoma, sees only
light
LITERACY SKILLS: learned print as sighted child, learned a little Braille when
lost sight, mostly uses Audio on computer, a little Braille

PSEUDONYM: Emma

BACKGROUND: bom in Ireland in 1984, Caucasian, Irish, youngest of 3 kids,


father computer engineer and mother housewife, moved to U.S. in sixth
grade
PERSONAL: lives alone in apartment, active in the blindness community, active
in Irish music festivals, active in Catholic church

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EDUCATION: attended public schools in Ireland and the United States, first
blind child to go to public school in her district, will finish college in May
2006 with English and Classics, plans to attend law school after that
EMPLOYMENT: not employed cause o f school but has had internships in D.C.
VISION: Totally blind since birth, eyes removed
LITERACY SKILLS learned Braille at age 4 from mother, uses Braille for
mostly everything, uses computers, tapes, everything but print

PSEUDONYM: Heather

BACKGROUND: bom in West Virginia in 1973 but moved to Saudi Arabia with
her family for her father's job, Caucasian, 1 of 3 daughters, father educated
as geologist but worked as a science and math teacher in Saudi Arabia,
mother didn't work except volunteer
PERSONAL: lives alone in apartment with 2 cats, active in the blindness
community
EDUCATION: public schools in Saudi Arabia for elementary, 3 years residential
high school, bachelor's in anthropology, law degree
EMPLOYMENT: employed in blindness field, trying to find job in law for past 5
years, teaches computer skills and programs, found job in field at end of
data collection
VISION: Totally blind since age two, both eyes removed
LITERACY SKILLS: learned Braille at age 5, uses Braille mostly as doesn't like
listening, has opticon, computer, notetaker, tapes, uses all

PSEUDONYM: Jean

BACKGROUND: bom in Illinois in 1925, Caucasian, oldest of 3 kids, father


bookkeeper, mother housewife, watched money closely
PERSONAL: owns house in SF, has 4 adult children and several grandchildren,
was widowed when very young, left with 4 kids to raise on her own
EDUCATION: attended one of first schools to include disabilities, which was in
Chicago, bachelor's in education
EMPLOYMENT: retired from blindness field, mostly worked out of home
teaching Braille courses
VISION: Totally blind since age two from the black measles
LITERACY SKILLS: learned Braille at age 5, mostly uses Braille, uses
computers and tapes for some things, reads a lot

PSEUDONYM: Ayella

BACKGROUND: bom in the Philippines in 1949, Philippino, youngest of 5 kids,


mother and father 2nd grade education so could sign names, mother didn't
work, father manual labor, very poor
PERSONAL: moved to the States at age 40, married ten years to blind man, no
kids, lives in apartment

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237

EDUCATION: attended public schools in the Philippines as sighted child,


bachelor's in chemistry from Philippines while still sighted
EMPLOYMENT: worked as chemist for crime lab before lost sight, employed in
blindness field now, runs store that sells products for the blind
VISION: Sighted until age 30, now totally blind from explosion
LITERACY SKILLS: learned print as sighted child, learned Braille when lost
sight by paying for own classes, today uses some Braille, uses computer
most

PSEUDONYM: Anthony

BACKGROUND: bom in California in 1974, Mexican American, one brother,


father truck driver, mother part-time jobs, spoke English in home
PERSONAL: single, lives alone in apartment, involved in blindness community,
very quiet
EDUCATION: attended public schools as kid in southern California, master's
degree in rehabilitation
EMPLOYED: employed in blindness field as rehab counselor, did lots of
volunteer work with blind kids when younger
VISION: Legally blind 20/400 right now, wants to have a fourth cornea transplant
LITERACY SKILLS: learned print as blind kid, mostly uses audio and some print
depending on sight, tries to use CCTV, downloads and listens to most
things

PSEUDONYM: Sava

BACKGROUND: bom in California in 1987, Eritrean American (her words), 1 of


4 kids, has blind brother, mother nurse, father lab technician, extended
family still in Eritrea
PERSONAL: lives with family in the East Bay, also has hearing problem, very
active in volunteer organizations
EDUCATION: high school student in Bay Area, active in her school
EMPLOYMENT: not employed
VISION: Decreasing over time from optic nerve atrophy
LITERACY SKILLS: learned print as child, learned Braille in fourth grade, today
uses Braille for almost everything, uses some very large print, uses tapes
and computer, has Braille Note for school

PSEUDONYM: Jonathan

BACKGROUND: bom in New York in 1912, describes himself as American


Jewish liberal, 2 siblings, father worked in factory in New York City,
mother housewife, nonreaders
PERSONAL: very active in the Jewish community, widowed years ago, he and
wife had been very active in community, projects for children with

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238

disabilities and the arts, one son who lives in the Dominican Republic,
attends support meetings for blind
EDUCATION: went to school as sighted child and adult in New York City, Ph.D.
in psychology
EMPLOYMENT: retired psychologist, worked in disability and with prisons
VISION: Sighted until age 90, now almost totally blind from macular
degeneration
LITERACY SKILLS: learned print as sighted child, wrote books in his field, can't
read or write today, depends on live-in helpers

PSEUDONYM: Yoko

BACKGROUND: bom in Japan in 1971, Japanese, 1 brother who also lost sight
as adult but totally unrelated to her blindness, father French professor,
mother piano instructor in home
PERSONAL: moved to the States for school at 18, moved to Bay Area for
master's, today lives with sighted boyfriend, has guide dog, not very active
in blindness community except for work
EDUCATION: elementary and high school in Japan, bachelors in music in
Indiana and master's in piano performance in SF
EMPLOYMENT: concert pianist until lost sight at age 30, now employed in
blindness field teaching computer skills
VISION: Sighted until age 30, now totally blind
LITERACY SKILLS: learned print as sighted child, today uses mostly audio, a
little Braille, uses computers a lot at home and for job

PSEUDONYM: Maria

BACKGROUND: bom in California in 1968, Mexican American, 1 brother who


is also blind, mother housewife and now sells insurance, step father works
in warehouse, not much information on father
PERSONAL: married to an SF policeman, 4 children, own house in burbs, not
active in blindness community but no time with kids
EDUCATION: elementary at school for the blind and high school at public
school, bachelor's and master's in social work
EMPLOYMENT: Worked in social programs until married and had kids,
homemaker with four children
VISION: Decreased over time from retinitis pigmentosa
LITERACY SKILLS: learned print at first, learned Braille during elementary
school, today uses Braille for most, some computer skills, uses tapes

PSEUDONYM: Simran

BACKGROUND: bom in India in 1979, South Asian American from India,


oldest o f 2 kids, sister also legally blind, father in business and mother

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239

housewife, moved to States when she was 7 for better opportunities,


Moslem
PERSONAL: lives alone in apartment in Berkeley, not physically active in
blindness community but comes forward when people need help, fairly
active in the Moslem community
EDUCATION: attended public schools in southern California, bachelor's in poly
sci, minor in English, working on law degree
EMPLOYMENT: not employed but helps father with business
VISION: Decreasing over time from retinitis pigmentosa, still has some tunnel
vision
LITERACY SKILLS: learned print as blind child, learned a little Braille at
training center after high school, uses mostly audio, mostly uses computer
and readers

PSEUDONYM: George

BACKGROUND: bom in Harrisburg, Pennsylvania, in 1957, African American,


8th of 11 children, father off and on in construction, mother housewife,
very poor when growing up, felt like family strangers when came home
PERSONAL: lives with roommate for financial reasons, rents house, active in
blindness community, active in community, sings in chorus
EDUCATION: went to school for the blind for elementary and high school,
bachelor's in social work
EMPLOYMENT: employed in blindness field as rehab supervisor, worked in
Social Security for years before that
VISION: Totally blind since birth
LITERACY SKILLS: learned Braille at age 8 when went to school, uses lots of
audio including the computers, lots of electronics but likes Braille most

PSEUDONYM: Akiko
BACKGROUND: bom in Japan in 1978, Japanese, only child, parents both
teachers
PERSONAL: rents room from another person in SF, very involved in dance and
other social events for the blind, just getting involved in blindness
organization
EDUCATION: attended public schools in Japan, bachelor's in English from
university in Japan, graduate student in special education in SF
EMPLOYMENT: not employed, has never held job
VISION: Totally blind since age nine
LITERACY SKILLS: learned print as sighted child, learned Braille at age 9,
today uses Braille for Japanese and audio for English, computer skills,
uses computer mostly

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240

PSEUDONYM: Beth

BACKGROUND: bom in the Philippines in 1987, Philippino, youngest of 3 kids


but they are much older by 12 and 15 years, mother died from heart attack
after volcano destroyed their house when she was 3 years old, moved to
States when she was 9 for surgery to restore sight, father works for
parking services in SF, step mother works for airlines
PERSONAL: not active in blindness community, chats on line for
communications
EDUCATION: started school at age 9, high school student in SF today
EMPLOYMENT: not employed
VISION: Almost totally blind since birth
LITERACY SKILLS: Braille, uses all SKILLS she has, like tapes, computer,
Braille Writer, notetaker

PSEUDONYM: Abdul

BACKGROUND: bom in Ohio in 1979, Arab America, only child, mother


professor of special education in Saudi Arabia today, didn’t work when he
was a kid, father executive in business
PERSONAL: single, lives alone, not active in blindness community but thinks
would like to be, at the end o f this study had arranged marriage to woman
from Saudi Arabia
EDUCATION: went to schools in Ohio and Virginia when kid, bachelor’s in
political and social thought, law degree
EMPLOYMENT: disability lawyer
VISION: Decreased over time from congenital glaucoma
LITERACY SKILLS: Audio, some Braille, computer mostly, tapes, digital

PSEUDONYM: August

BACKGROUND: bom in the Bay Area in California in 1989, Native American/


African American, middle o f almost 7 children, mother and step father
unemployed, mother and step father blind, two siblings blind,
grandparents on mother’s side blind
PERSONAL: not active in blindness community, not active in school activities
EDUCATION: public schools, current high school student
EMPLOYMENT: not employed
VISION: Legally blind from aniradea
LITERACY SKILLS: Large print, some audio, some computer skills

PSEUDONYM: Claire

BACKGROUND: bom in California in 1972, Mexican American, father died


when child so moved back to Mexico with her mother and 4 siblings
PERSONAL: 10-year-old son, single parent, rents apartment in Richmond

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241

EDUCATION: public schools in Mexico until age 17, working on GED


EMPLOYMENT: unemployed
VISION: Sighted until age 15, now totally blind
LITERACY SKILLS: learned print in schools in Mexico, Audio, just getting
computer skills now

PSEUDONYM: Sarah

BACKGROUND: bom in Missouri in 1971, Caucasian, youngest of 4 children,


father mechanic, mother housewife
PERSONAL: married, husband in business, not active in blindness organizations
EDUCATION: bachelor's degree in psychology, few graduate courses
EMPLOYMENT: worked in retail till started losing sight, now unemployed
VISION: Sighted until age 29, now limited vision from diabetic retinopathy
LITERACY SKILLS: Audio, uses computer with Jaws

PSEUDONYM: Joseph

BACKGROUND: bom in LA, California in 1986, African American, 2 older


brothers, no mention of father, mother doesn't work
PERSONAL: attended training, has roommate through training, has girlfriend,
stays home mostly, thiking about getting involved in Bay Area activities
but hasn't yet
EDUCATION: public schools in LA, recently graduated from high school
EMPLOYMENT: unemployed
VISION: Almost totally blind since birth
LITERACY SKILLS: Braille since childhood, uses computer technology mostly,
downloads books and articles

PSEUDONYM: Louis

BACKGROUND: bom in Mexico in 1973, Mexican, father farm work, no


mention o f mother, step mother unemployed, father left to move to States
PERSONAL: married, one young son, loves soccer and goes to all the games in
the area, loves sports, attends Catholic church
EDUCATION: attended schools for the blind in Mexico when father could afford
it, didn't learn much, high school diploma in Bay Area at age 22, would
some day like to take college courses
EMPLOYMENT: unemployed and has never held job
VISION: Totally blind since birth
LITERACY: Audio, some Braille, uses computer for most everything

PSEUDONYM: Marcus

BACKGROUND: bom in California in 1962, Mexican American, two siblings,


father migrant farm worker, mother didn't work

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242

PERSONAL: lives alone, single, somewhat active in the blindness community


EDUCATION: public schools as sighted child, master's in rehabilitation
counseling
EMPLOYMENT: employed in blindness field, three part-time jobs
VISION: Legally blind from diabetic retinopathy
LITERACY SKILLS: Audio, some print, some Braillem mostly computer

PSEUDONYM: David

BACKGROUND: bom in Michigan in 1967, Caucasian, one older sister, father


worked in airlines, mother didn't work when he was little but then got
master's in business, moved to California when he was kid
PERSONAL: active in the blindness community, married, no children,
EDUCATION: attended public schools in elementary and secondary, bachelor's
in political science, graduate degree in history
EMPLOYMENT: employed in disability field
VISION: Legally blind until age 21, now totally blind
LITERACY SKILLS: Audio, some Braille, uses computer for most things

PSEUDONYM: Michael

BACKGROUND: bom in California in 1955, Caucasian, Jewish heritage, has 2


sisters,
PERSONAL: single, lives alone in apartment, owns house in another community
which he rents out, active in the blindness community, participates in
Jewish holidays and celebrations, loves camping and doing things in the
community
EDUCATION: attended public schools in southern California, bachelor's in
journalism and history
EMPLOYMENT: employed in disability field until recently, now unemployed
VISION: lost sight at age 20 from Steven's Johnson syndrome, has been
Decreasing more over time
LITERACY SKILLS: Audio, some Braille, computer and portable players

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APPENDIX B

INITIAL INTERVIEW QUESTIONS

GENERAL BACKGROUND INFORMATION

1. When and where were you bom?


2. Where were you raised?
3. If you were not raised in the Bay Area, when and why did you move to the Bay
Area?
4. How would you describe your racial, ethnic and/or cultural background?
5. What is your first language and do you speak other languages?
6. How would you describe the economic environment in which you grew up?
7. Who did you live with before adulthood?
8. How would you describe your economic situation today?
9. Who do you live with today?
10. What do/did your grandparents do for a living?
11. What was your grandparents' educational background?
12. What do/did your parents do for a living?
13. What was your parents' educational background?
14. How long have you been blind or visually impaired?
15. What is the cause of your blindness?
16. What is your visual acuity?
17. In what ways has your visual acuity changed over time?
18. What tools do you use for mobility?
19. Are there other blind people in your family? If so, who?
20. Can you remember the first blind person you saw or met?
21. Who have been the blind role models over the course of your life?
22. What are your general attitudes about the abilities of blind people?
23. Have your attitudes changed over time?
24. What are your family's attitudes of blindness? In what ways did those attitudes
affect you?

LITERACY DEFINITIONS AND IDEAS

1. How do you define literacy?


2. With that in mind, how do you assess your own literacy skills?
3. Which literacy tasks can you do with ease?
4. Which literacy tasks pose a challenge?
5. In what ways do you feel your blindness positivelyand/or negatively influenced
your literacy experiences?
6. In what ways do you believe your literacy experiences differed from those of a
sighted person?
7. In what ways do you believe your literacy experiences differed from those of other
blind people?

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HOME LITERACIES

1. In what ways do you believe your family or others in your home influenced your
literacy experiences?
2. What are your earliest memories of seeing or hearing others read and write in your
home?
3. What memories do you have of being read to by others in your home?
4. What memories do you have of learning to read and write at home?
5. What memories do you have of reading and/or writing at home alone?
6. When you think of reading and writing as a child at home, what people do you
associate with those memories?
7. As a child at home, what materials were available to help in your reading and
writing?
8. Who provided the materials that you used for reading and writing at home?
9. O f the available materials, which ones did you use the most?
10. O f the literacy materials in your home, which ones were accessible to you as a blind
child?
11. Besides home, what other places did you find the materials for reading and writing?
12. At home, in what ways have your literacy experiences changed from your
childhood to now?
13. In what ways has technology influenced your literacy experiences at home?
14. Today, what reading and writing do you do for yourself?
15. In what ways does blindness affect your daily literacy at home?
16. (For example, reading for pleasure, reading the newspaper, reading the mail,
cooking, keeping a calendar, etc.)
17. In what ways does your blindness affect your relationships with family members
today?

SCHOOL LITERACIES

1. If you attended preschool, what literacy experiences did you have in the school?
2. What type of schools did you attend during your elementary and secondary
education?
3. If you attended both public and residential schools, what were the main differences
in your literacy experiences?
4. If you attended public school, what special education services were provided to
you?
5. What post-secondary schools have you attended?
6. What degrees do you hold? When did you receive these degrees?
7. What other types of formal education/training have you received during your life?
(For example, rehabilitation training.)
8. What materials have you used for literacy in school during your life?
9. Who decided which medium you would use for reading and writing?
10. If you weren't taught Braille, what reasons were given?
11. What memories do you have of reading and writing in school?
12. What memories do you have o f being taught how to read and write in school?

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2 45

13. What memories do you have o f being evaluated on your reading and writing?
14. What materials were available for reading and writing in school?
15. Of the available materials, which ones were accessible to you?
16. Which o f the materials did you use and why?
17. Did you do any extracurricular reading and writing?
18. What school organizations did you belong to that involved reading and writing?
19. In what ways do you feel you were included and/or excluded from literacy activities
in school?
20. How has technology influenced your school literacies?
21. If you have attended college, how did your literacy experiences differ from those in
primary and secondary school?

WORK LITERACIES

1. What job(s) have you held in the past?


2. What job(s) do you currently hold?
3. What are your job duties?
4. What work-related goals do you have in your life?
5. What literacy skills have you used for your job(s)?
6. In what ways have you been evaluated on your literacy skills at work?
7. What materials have been available for reading and writing at work?
8. Which of the materials did you use and why?
9. Who provided those materials?
10. What professional organizations have you belonged to that involved literacy?
11. In what ways do you use technology in your job?
12. Has technology influenced your job(s)?

COMMUNITY LITERACIES

1. In what ways do you believe your blindness has influenced your role in the
community?
2. In what ways do you believe your blindness has influenced your social life?
3. What connections do you have with other blind people in the Bay Area?
4. What connections do you have with sighted people in the Bay Area?
5. What literacy events do you enjoy in the Bay Area?
6. What literacy events or activities do you attend regularly?
7. In what ways do you use technology in the community?

CONCLUDING REMARKS

1. In looking over your life, what literacy experiences do you believe influenced you
the most?
2. What has motivated you to obtain literacy skills?
3. What has discouraged you from attaining literacy skills?
4. What value do you place on literacy?
5. What value do you place on technology?

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246

6. In what ways has learning certain literacies affected your life? (Braille, print, screen
readers, tape recorders, etc.)
7. If you were to give advice to others (parents, teachers, rehabilitation counselors)
about literacy for blind individuals, what would you say?

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