DISABLED

ALWAYS
My Not-so-Simulation Experience

Caitlyn Hilton

Salt Lake City Community College | EDU-1400 Study of Disabilities

2020
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Disabled Always

In all honesty, I don’t like this assignment, and this isn’t the first time that I’ve done an

assignment like this. The kind where you are to pretend to have a disability in order to gain a

deeper understanding of what the disabled go through. Let’s be clear: one day silent,

blindfolded, or earplugged in no way gives you a proper look into the life of someone with a

lifelong disability. I have spent my life adjusting and learning how to live in a way that works for

and with my disabilities, one day bumbling around confused is not a simulation of a disability.

I think it’s important to remember that some of us with disabilities fall into groups that

consider our disabilities to be a part of our culture. Most would be offended to see someone

who is not a part of their culture, race, ethnicity or religion pretending to be a part of it just for

a day to “see how it feels”. I cannot express to you how distasteful it is to walk around with ear

plugs pretending that you are suddenly deaf. Ethically, how comfortable would you feel if

somebody asked you to act a different race or culture for a day? I also don’t like the implication

that those of us that have sensory disabilities sit and mourn our situations or wish we were

“normal” (I was born with my hearing loss, I don’t know any different). Rather, we just do what

we do and hope to be treated like everyone else (that being said, it would be absolutely

wonderful if I didn’t have to pay literally thousands out of pocket every 5 years for adjuncts to

level the playing field as I have yet to find an insurance that will cover them).

As we previously discussed in our essays about “Inspiration Porn”, disabled individuals

are not meant to be inspiration for the non-disabled. We are also not meant to be a social

experiment for you to realize how easy your life is, or how “difficult” ours is. My life is not

meant to be a simulation and my experience is not meant to be a learning tool, and it is not the

responsibility of the marginalized to educate those that aren’t.

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Disabled Always

All of this being said, I will be participating simply due to the fact that my grade is

important to me, but I won’t be pretending. I guess I could stop taking my medication and

force myself through a day dealing with my rehabilitating mental disability, or I could

technically just refuse to wear my hearing aids and detail it for you, (it’s super quiet and

mumbly by the way) but I think the best object lesson is to explain what it’s like for me, because

that really is the only person I can speak for isn’t it?

First off, society tends to lump all disabilities together. For example, when someone

asks me about my hearing (after they become brave enough even though I have noticed them

starting at my hearing aids for our entire conversation) and I tell them I’m hearing impaired, I

inevitably get the “You’re so brave”! or “Can I get you anything…” or “Do you need help

finding…” or “How can you drive?” This is followed by the I don’t know what I’d do if I didn’t

hear (your choice of hearing centric activity here) anymore. Then the pitiful glances…with the

occasional “I’m sorry”. It gets old, REALLY old.

Next you have people who don’t realize your deaf because you read lips. Then they tell

you how well you do at whatever it is you’re doing (like eating lunch). I’ve even had people

question my disability because of the fact that I read lips, telling me I don’t seem deaf or they

start to make really quiet noises and try to see if I can hear them or not. The amount of times

somebody has exaggeratedly mouthed something at me to try to test my lip reading, or asked

“Can you hear this? What about this?” are uncountable. Finally, and my favorite, when you

don’t answer someone because you weren’t facing them (therefore didn’t read their lips and

didn’t hear them) and they assume you’re a jerk. People often tell me that they thought I was

rude when they first met me. Why? Because they thought I was constantly ignoring them.
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Disabled Always

Then there is the public stigma that you simply can’t. My great grandmother was

labeled an “imbecile” due to her deafness and not allowed to go to school because she lacked

the understanding of a “functioning person” (quotes taken from her volumes of articulately

penned journals). Or my grandmother being told she could never be an educator (her dream)

because she “wouldn’t be able to communicate with normal children” (she worked for 25 years

in SLC school district in SPEC classrooms). Or my dad who had learned to “fake it” well enough

that he managed to get hired by the fire department despite their hearing requirement.

Unfortunately, when his pre-hire physical came back while he was in boot camp the

department tried to fire him for not meeting fitness standards due to hearing (It all worked out,

he advocated for himself and works as a Captain and has for the past 25 years). At one of my

first jobs I had a boss tell me that my hearing loss made me appear “ditzy”. She had never

complained about my work until after she found out about my hearing loss and then she tried

to change my duties completely, worried that my hearing loss might hurt my performance

despite the fact that I had it the entire time and it had never affected it before. You learn pretty

quickly not to talk to people at work about your hearing impairment as it automatically labels

you, stigmatizes you, and eradicates opportunities. My family has had to fight this sort of

discrimination constantly. Not one of us has ever sued, we just had to prove to the “normal

world” that we could “make it”. Now we have Physicians (two), Therapists (two), Educators

(two, and me on the way), a Firefighter, an Actor, Construction Contractors, and the list goes on

and on and here we are all walking around like regular people.

As I mentioned before, I am not a fan of assignments like these and I think there are

more appropriate ways to learn about this topic. I think an interview would be interesting with
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Disabled Always

someone who voluntarily shares their story. Reading and understanding the Americans with

Disabilities Act is incredibly useful. Talking about healthcare or different tools on the market

available for different disabilities might be an interesting topic as well. Even reading books by

those who choose to educate (Temple Grandin’s prose on Autism, “The Way I See It” is a great

example) can provide a better understanding.

What does not provide a better understanding of disabilities is asking a non-disabled

person to try to play pretend or imagine what life would be like if they were…. different. In my

experience all this leads to is people saying they have a “greater appreciation” for those that

are disabled. Here’s the thing, until I do something worth appreciating, I don’t want your

appreciation.