DISABILITY

Challenging myths and presenting realities

National Trust :: www.thenationaltrust.in :: nationaltrust@nic.in

National Trust
For the welfare of persons with Autism, Cerebral Palsy, Mental Retardation & Multiple Disabilities
(Ministry of Social Justice & Empowerment, Govt. of India)

Objectives of the Trust

(a) to enable and empower persons with disability to
live as independently and as fully as possible within
and as close to the community to which they
belong;
(b) to strengthen facilities to provide support to
persons with disability to live within their own
families;
(c) to extend support to registered organisations to
provide need based services during period of crisis
in the family of persons with disability;
(d) to deal with problems of persons with disability
who do not have family support;
(e) to promote measures for the care and protection
of persons with disability in the event of death of
their parents or guardians;
(f) to evolve procedure for the appointment of
guardians and trustees for persons with disability
requiring such protection;
(g) to facilitate the realisation of equal opportunities,
protection of rights and full participation of
persons with disability; and
(h) to do any other act which is incidental to the
aforesaid objects.

National Trust :: www.thenationaltrust.in :: nationaltrust@nic.in

FOREWORD
This booklet is for families and for anyone else who supports
people with disabilities to study, work and become part of
the community.
This booklet was written because we found many people
believed in "myths" and this attitude led to people with
disabilities being isolated, and not being given enough
opportunities to develop themselves.
We introduce "Pavithra", a positive thinker, a motivated and
happy person, who has broken many barriers. Pavithra will
be with you in this booklet. She is our icon, your companion
as you read, discuss, debate and think of what the "Reality" is.
We also hope many many people read this book. Do pass it
around. Do use it in any group work and awareness
programmes. Every family should have one, so that they can
sensitize all around them.
For developmental disabilities such as
Autism, Cerebral palsy, Mental
Retardation and Multiple disabilities,
there is no medical cure - but many
things are possible through training
opportunities and community support.
It is important to remember that in a person with
disability, we see:
The person first - then the Disability
Strength first - then the area needing special support
Fun first - then work at other challenges
Self esteem first - and always!
This all leads to Inclusion and Community Participation
Poonam Natarajan, Chairperson

New Delhi-2009

National Trust
For the welfare of persons with Autism
Cerebral Palsy, Mental Retardation & Multiple Disabilities
(Ministry of Social Justice & Empowerment, Govt. of India)

National Trust :: www.thenationaltrust.in :: nationaltrust@nic.in

Myth
Developmental disabilities can
be cured by doctors, specialists,
quacks, sadhus, tantriks,
ojhas

People Say

Reality
Developmental disabilities are neurological
impairments for which there is no cure.
The condition is permanent and can be managed better
using appropriate management and early intervention
Wasting time in searching for a cure will only be a
setback in the child's learning the skills she is capable of.
Focus should be on making individuals more
independent in activities and becoming contributing
members of the family & society

Pavithra Says

National Trust :: www.thenationaltrust.in :: nationaltrust@nic.in

Myth
. I have done something
wrong. It is my past
karmas that I have to suffer..

Parents Say

Reality
No one can be blamed. It can happen to
anyone
One should accept and look at the child with
disability as a child first and provide
encouragement as you would any other child

Pavithra Says
Several parents have taken on the
challenge and lived fuller lives
themselves.
Pinki Rani, a parent herself, developed a
vibrant group of parents of children with
deafblindness, across several states. The
group shares experiences, and learns
from each other.
4

National Trust :: www.thenationaltrust.in :: nationaltrust@nic.in

Myth
It is best to keep your child at
home. Do not tell anybody about
the child. All they need is
protection and care.

People Say

Reality
There is nothing to be ashamed of, the child
with disability is like any other person.
The child needs to learn by communicating
with her environment
She cannot be just locked up for a lifetime

Pavithra Says

Assessments should be used to guide

interventions. The way forward is by
identifying the strengths and abilities of
the child.

National Trust :: www.thenationaltrust.in :: nationaltrust@nic.in

Myth
.Disability is a huge burden on
the family they will always be sad
and weary Now you can never
be happy
People Say

Reality
Many families have overcome and accepted
the disability making it a part of the identity of
the child
The human experience of disability can either
make you stronger and more joyful or take
you along the road of depression, the choice
is yours.

Pavithra Says
Eashwari, from a village in Tamilnadu, got
married at a very early age before she could
even finish her schooling. She has 2 children
with cerebral palsy. She managed them at
home with inputs from an NGO. She went on to
set up an institution to help such children in her
district. She has been awarded as the 'Best
woman acheiver' by the District Administration
and is now appearing for her school final exams
to equip herself better as a professional.

National Trust :: www.thenationaltrust.in :: nationaltrust@nic.in

Myth
.Everyone is responsible for
my child being disabled they are
all to be blamed

People Say

Reality
Trying to find out whom to put the blame on is
a waste of time and energy
It is best to accept the situation and find ways
to live independently and spiritedly

Pavithra Says
Disability is a human experience which
takes one on a special journey. All people
become a part of the journey at some
stage in life, because all of us are only
temporarily able bodied and have some
need for special support as we go on.

National Trust :: www.thenationaltrust.in :: nationaltrust@nic.in

Myth
Nothing can be done! This
child will be like this all his
life

People Say

Reality
A lot can be done with early intervention,
appropriate therapy and skill training.
Every human being has evolving capacities,
the environment and human experiences
help evolve the capacities

Pavithra Says
Dhanashekhar has cerebral palsy. With
concentrated efforts and appropriate physio
and speech therapy, he is now independent
in moving. He is a graduate, a disability
activist and married.
Ten year old Sonali, born deafblind in a
village in UP, benefitted from the early
intervention by an NGO. Her systematic
training has enabled her to attend a
mainstream school, making her the pride of
her village and school.

National Trust :: www.thenationaltrust.in :: nationaltrust@nic.in

Myth
Poor things, the child with
disability is to be pitied. So is
the parent!

People Say

Reality
Pity and sympathy do not help anyone
People can rise to the demands of any
situation, when moulded in a positive
environment
The greatest help is to include them in all areas
of life

Pavithra Says

People with disabilities should be

encouraged to participate in all events,
celebrations, functions and work. They
need education, work and social
interaction like all of us.

National Trust :: www.thenationaltrust.in :: nationaltrust@nic.in

Myth
Children with disabilities have
limited capacities. Their
capacity does not grow.

People Say

Reality
Not at all!
The capacity of a person with disabilities
evolves with time, exposure, education,
interaction, participation, acceptance and
empowerment.

Pavithra Says

Daya was born deafblind and was dependent

on others for all her needs as a toddler.
However her zest for life and spirit made her
independent. She communicates through
signs, picture cards and gestures. She has an
inherent aptitude to lead and play. Assisted by
a pair of glasses and hearing aids at age 11,
she is discovering the exciting world of
numbers. Daya is a standing example of
evolving capacities.
Bharat Vinayak Chavan, 25, from village
Vajnapur, block Gangapur, has intellectual
disability install. Five years ago, proper
counseling helped his parents to discover
Bharat's strengths and has made him a
contributing member of his family of limited
means.

10

National Trust :: www.thenationaltrust.in :: nationaltrust@nic.in

Myth
The child with disability is
different from other children and
needs 'special' education

People Say

Reality

Every child is different. It is impossible to find a class

of students, all with similar skills, talents, interests and
academic abilities
Children with disabilities have the right to go to
mainstream schools, where teachers can receive
training regarding the different teaching techniques,
aids and adaptations which can be provided.
Child-centric teaching methods and classroom
organization will help all children and promote
inclusion.

Pavithra Says

11

National Trust :: www.thenationaltrust.in :: nationaltrust@nic.in

Myth
My child will learn odd
mannerisms from a child with
disability.

People Say

Reality
Children may imitate one another initially,
but it can never be permanent
They learn from one another by playing
together and being together

Pavithra Says
Karan, 13, has Downs Syndrome. He
learns music in an inclusive class in Delhi
with peers from 8-14 years old. Initially
they were curious and would stare at him
and his manners. Today, after 2 years, all
the children share their duties equally in
the class. They help each other and wait
patiently if Karan takes time to learn and
sing his part.

12

National Trust :: www.thenationaltrust.in :: nationaltrust@nic.in

Myth
Children with disabilities cannot
be included in mainstream
schools. Impossible! What will
they do in the class?

People Say

Reality
We need to accept and promote diversity in
the classroom and community
With proper adaptations in the environment,
in the curriculum and in examination system,
we can have more participation from the
children in the learning

Pavithra Says

13

National Trust :: www.thenationaltrust.in :: nationaltrust@nic.in

Myth
Person with developmental
disability has a low IQ and
should be treated appropriate
to his mental age!...

People Say

Reality
NO! It is an insult to make an adult do childlike activities
Persons with disabilities should be treated
according to their chronological age
With age, the needs and aspirations change
for all of us!

Pavithra Says
Thirty year old Feroz, cannot name
colors or identify shapes. His intellectual
abilities are like that of a three year old.
He can however work well in gardening,
specially watering plants and mixing
manure.

14

National Trust :: www.thenationaltrust.in :: nationaltrust@nic.in

Myth
Children with intellectual
disability can study only in special
schools, not in mainstream
schools.
People Say

Reality
Children benefit from being and learning with peers
with diverse abilities
All children benefit from a relevant curriculum.
Children learn collaboration
Children learn that all people are not alike and they
should be prepared early in life to accept differences
Special schools and mainstream schools should ask
themselves:
Do we prepare the child for all situations in adult life?
Is there only one specific way to help a child?
Can a child benefit from different education systems
suitable for different ages of her life? For example
'Special School', can support Early Intervention, School
Readinese Programmes and also provide resources for
the mainstream school.

Pavithra Says

15

National Trust :: www.thenationaltrust.in :: nationaltrust@nic.in

Myth
Disabled persons need protection
and care. They cannot work and
contribute. They will always be a
burden.

People Say

Reality
Ramesh is a young man with mental retardation. After his
father's death, he and his mother lived with the elder brother.
However, his brother and his wife could not get along with them
and made Ramesh & the mother leave the home .
An NGO helped Ramesh to be trained and find a job in a
packaging factory. He now lives with his mother in a room close
to the factory. Thus he started supporting himself and his
mother.
People with disability can take on responsibility and contribute
productively when given an opportunity.

Pavithra Says

16

National Trust :: www.thenationaltrust.in :: nationaltrust@nic.in

Myth
Persons with disabilities can never
get married. They have no sexual
needs. Girls with should have a
hysterectomy to save them from
unwanted pregnancy...
People Say

Reality
NO two persons are alike. We should not label
people like we do bottles and jars.
Each person is born unique and has his own
strengths and needs. It is best to respect the
person's needs.

Pavithra Says

Prabhakar is a front office executive with an

NGO in Chennai. He is married and has a
daughter. He has Cerebral Palsy and is a
wheel chair user.
Achytanal Guha works in Administration with
a Delhi based NGO. He is married. He has
Autism.
Bharati has multiple disability. He is married
and has a daughter and works as a gardener
in Madurai.
Rajbala lives in Delhi with her husband and
daughter. She loves to cook and watch TV.
She has Cerebral Palsy.
Zamir Dhale is the Public Relations Officer
for Sense International. He is married and
has a daughter. He is deafblind.

17

National Trust :: www.thenationaltrust.in :: nationaltrust@nic.in

Myth
People with disabilities need a
legal guardian but no one will take
on such a burden!

People Say

Reality

If persons with disability are given the right

opportunity to go to school and learn skills, they
may be able to take care of themselves and also
contribute to the society
Some may not need a legal guardian and at most
may need support in specific areas.
To be a legal guardian should be viewed as a
privilege and an opportunity to support another
human being! It can be an enriching experience in
life! Not everyone gets such an opportunity like
this.

Pavithra Says

18

National Trust :: www.thenationaltrust.in :: nationaltrust@nic.in

Myth
A person with disability has to
be a hero else he is a zero

People Say

Reality
All people cannot be heroes in life.
Persons with disabilities have different
capacities and all cannot be heroes.
It is important to identify the specific potential
in a person, nurture it and provide an
opportunity to contribute to the family and
community.
Pavithra Says
Mira Janardhan Borade, 22, has intellectual
disability and lives in a village near
Aurangabad. For the 2-3 years, she
accompanies her mother to pick cotton,
green chillies, etc. from the fields.When they
work on another's field, Mira is paid the
same wages as her mother. She is also a
great help at home with her domestic skills
in washing clothes and cleaning vessels.
Firoz makes disposable leaf plates in Indore.
He is deafblind. He dreams of becoming
economically independent soon by starting
his own unit.

19

National Trust :: www.thenationaltrust.in :: nationaltrust@nic.in

In Sum : Include
People of diverse abilities have equal rights to
every opportunity
People are an integral part of the society
irrespective of their abilities
Nothing about us without us - let persons
with disability have their say
Think positive, accept, accommodate
Provide access to all amenities and facilities
Live life fully and happily.

Pavithra Says

20

National Trust :: www.thenationaltrust.in :: nationaltrust@nic.in

The Disability Paradigm Shift

The Human Rights

model

The Social
model

The Medical
model

21

National Trust :: www.thenationaltrust.in :: nationaltrust@nic.in

Medical Model of Disability

The traditional understanding of disabled people
being patients, they have an individual medical
problem
They need treatment and care
They need to be in the custody of non disabled
people
They cannot make decisions for themselves.
Until a cure is found they need to be at home.
They cannot participate in social events.
This has now changed.

Social Model of Disability

Disability is a community issue not an individual
problem
Disabled people learn to look at their abilities and
not their disabilities.
The environment needs to be modified, so that
people with disabilities can also participate fully e.g.
ramps and lips, adapted workplaces and adapted
curricula in schools.

22

National Trust :: www.thenationaltrust.in :: nationaltrust@nic.in

Guiding Principles of the UNRPD

Respect for inherent dignity, individual autonomy
including the freedom to make one's own choices,
and independence of persons with disabilities;
Non-discrimination;
Full and effective participation and inclusion in
society
Respect for differences and acceptance of disabled
people as part of human diversity and humanity;
Equality of opportunity;
Accessibility;
Equality between men and women;
Respect for the evolving capacities of children with
disabilities and respect for their right to preserve
their identities.

23

National Trust :: www.thenationaltrust.in :: nationaltrust@nic.in

Autism
Difficulty in sensory processing
Difficulty in using and understanding language
Difficulty in social understanding
Difficulty in imagining, thinking and organizing
Facilitated by adapting the environment

Cerebral Palsy
Essentially,
An intelligent mind locked in a disobedient body
Typified by motor dysfunction. Gross motor
(sitting, standing, walking), fine motor (writing,
sewing, painting) and speech are generally affected.
Need for early therapy to improve
motor function and speech

24

National Trust :: www.thenationaltrust.in :: nationaltrust@nic.in

Mental Retardation
A person with Mental Retardation has difficulty with
attending, understanding, reacting and acting as fast
and to the extent of others of the same age.
The cognitive area of the brain is affected, leading to
slow learning and responses.
The child will take long time to understand and may
need to be explained in simpler terms, one thing at a
time.
Persons with Mental Retardation should be given
appropriate opportunities to learn and work.
Multiple Disabilities
Essentially,
A combination of disabilities like

Deafblind

Cerebral Palsy with Mental Retardation

Any of the above with sensory impairment

Need-specific adaptations to suit each persons

needs, will facilitate persons to become contributing
members

Some strategies for Teaching

Simple to complex.
Concrete to Abstract.
Known to Unknown.
25

National Trust :: www.thenationaltrust.in :: nationaltrust@nic.in

Some Simple Ideas for Sitting & moving

seat for child
with spasticity
who has knockknee contractures

strap for
keeping legs
apart (one
around each
leg and Eat
through holes
in sides of
seat)

holes for straps

A log or roll seat helps the
child with spasticity or poor
balance sit more securely
with legs spread. Log
should be as high as
the knees. Leave a
little room between
the cut-out circle in
the table and the
child's belly.

Tire seat
or swing
bends head,
body, and
shoulders
forward to
help control
spasticity

seat for a
child with
spasticity
whose body
stiffens
backward

NO
THANKS!

YES
PLEASE!

26

National Trust :: www.thenationaltrust.in :: nationaltrust@nic.in

Some Simple Ideas for Standing

Use angle
irons to
hold
boards
firmly

block to hold legs

apart (if needed)

straps
STAND-IN TABLE

OTHER IDEAS

clasp

hinges
(cloth or
leather)

padded knee
block

door
hollow log
(like people
large tile or use for bee
cement pipe hives)

adjustable foot
board for children
of different heights

plastic garbage
container (Faster
it to a Wide base
to keep it from
tipping over.)

STANDING BOARD
Sometimes a child who
does not have enough
control or strength
to hold his head up
when lying

Can hold his head up

better when sitting
or standing

A simple standing board can help

hold the child in a stable position.
This one leans against a table
holes for straps
A knee separator
can be added

hip straps

holes for feet (straps

may also be needed)

LEANING BOARD

from Don Caston

and AHRTAG
(See p. 774)

27

National Trust :: www.thenationaltrust.in :: nationaltrust@nic.in

Some Simple Ideas for bathing

The child who has

trouble sitting
because she stiffens
backward may need
some kind of back
support to sit while
bathing.

This is a good way to hold the

child who stiffens and bends
backward or throws open her
arms when you pick her up.

A baby that tends to

stiffen backward can
be held
bathing.

Then place the child on his

back, gently spreading the legs
as wide as possible to clean
between them. Also, lift arms
above the head. In this way,
bathing can be combined with
range-of-motion exercises.(see
chapter.43)

An older child can be seated

on his mother's feet supported
by the corner of the bathroom.

28

National Trust :: www.thenationaltrust.in :: nationaltrust@nic.in

Some Simple Ideas for toileting

Correct position of hands,

for lowering pants
Hook thumbs
inside
pants and
push down

For the child severely disabled

with cerebral palsy, the pot can be
placed between mother's knees.
This provides good back support,
Mother holds his houlders forward,
his hips bent and
his knees
separated.

for raising pants

Put hand
Inside
pants to
pull over
bottom.

Later it may be possible

to put the child on a
corner seat like this which also holds arms
and shoulders forward
and helps keep hips bent.

2 posts may
be needed to
keep knees
apart
bucket

29

For
training,
pin shirt
up out of
the wayor do not
wear one.

A cardboard
box can also
make a good
sitting frame.

National Trust :: www.thenationaltrust.in :: nationaltrust@nic.in

Some Simple Ideas for Education

AIDS FOR READING, WRITING, AND DRAWING

PENCIL HOLDER FOR A WEAK OR PARALYZED HAND
For children who have difficulty holding a pen, pencil, or brush, or turning the pages of
a book, you can think of all sorts of adaptations, Here are a few examples:

Place of leather
or still cloth
lastened to a
stick, with space
to force a pencil
through the hole

Velcro or
buckle

Velcro (sticks-to-itself strap)

SIMPLE
MODEL

strap
around
hand

Stick

long thin pocket

to hold pencil
sewed onto strap

AIDS FOR HOLDING PENCILS, PENS OR BRUSHES

A thick handhold gives better grip and control.

pencil-sized hole

place of
hose or
lubing

screw to
hold pencil
in place

rubber ball
hole slightly
smaller than
pencil-so
that it must
be forced
through it

place of a
tree branch

brush

For other ideas, see pages 264 and 402.

PAGE TURNER
(Design for head)
metal rod attached
to headband
pencil upside down

wire to keep
pages straight

wood book
support
rubber eraser used for
'grip' to turn pages

For writing a
pencil or pen
can be laped
with the point
down

30

Tray table tills up for

reading and writing
and down for ealing

National Trust :: www.thenationaltrust.in :: nationaltrust@nic.in

Some Simple Ideas for adapting the

environment for persons with Autism
An environment that is comfortable, safe, predictable, organized,
keeping in mind the strengths and needs of all the students in class. In
order to provide a structured environment you need to be willing to
make adaptations in your class arrangement, routines and
expectations to accommodate the abilities as well as needs of all the
children in class.

Environment

Physical

Bus
Classes
Corridors
Lunchroom
Playground

Social Emotional
Security/confort
Interaction
(peers/Teachers)

31

Learning
Instruction
Activities/tasks
Teaching methods

National Trust :: www.thenationaltrust.in :: nationaltrust@nic.in

DOs

It is fine to shake hands with a person with disability shaking

the person's left hands is acceptable

Look at and speak directly to the person with disability, not

through an interpreter

Keep to eye-level when talking to a person using a wheelchair

Introduce yourself when entering or leaving a room, when you

are with a person with low vision

Offer assistance in a dignified manner with sensitivity and

respect

Allow a person with visual impairment to take your arm (at or

about the elbow)

Signal with a tap or a wave to get the attention of a person who

is hearing impaired

Speak to a person with disability as you would to anyone else

DON'Ts

Do not patronize by patting a person with disability on the head

or shoulder

Do not pretend to understand if you have trouble with what a

person is saying. Instead, ask the person to repeat

Do not lean on a wheelchair when addressing a personthe

wheelchair is the persons private space

Do not stare at a person with disability

Do not shush the child who is asking about a person with

disability. Rather, answer in simple, factual manner to help the
child understand

This primer is to be part of all Awareness

Programmes, which also should include the
following topics:
About Developmental Disabilities
International and Indian Legislation and State
support systems
National Trust schemes

March 2009

Illustrations in this booklet are from the book Disabled Village Children by
David Werner (Indian Edition)
32

Concieved, written and designed by:Chitra Vasudevan, Anindita Mukherji, 99and1 design

The National Trust Schemes

Aspiration (Day Care Centre Scheme) 0-6 yrs.
Early Intervention & School Readiness. 0-6
Gyan Prabha (Scholarship) Scheme
To encourage stakeholders to take training and professional
courses
Uddhyam Prabha (Incentive) Scheme
To promote vocational and economic activities through interest
subsidy
SamarthCentre-based Scheme
Long term and short term stay facility.
Gharaundalife long residential facility
Remote Area Funding Scheme
To encourage National Trust activities in unrepresented districts.
ARUNIMAssociation for Rehabilitation under National Trust
Initiative of Marketing
To build a Marketing federation by increasing the earning capacities
of persons with disabilities to earn atleast minimum wages.

National Trust
For the welfare of persons with Autism, Cerebral Palsy
Mental Retardation & Multiple Disabilities
(Ministry of Social Justice & Empowerment, Govt. of India)

16-B, Bada Bazar Road, Old Rajinder Nagar, New Delhi-110060

Tel.: 43187804, 93187878 Fax : 011-43187880, 43187881

Design and Printed by: Viba Press Pvt. Ltd. - 9810049515

Niramaya
To provide Health insurance for persons with developmental
disability.