I Need Accessibility, Not A Cure

It’s not being disabled that sucks, it’s living in a world that isn’t built for us

I failed the first test I took. I was going on five years old, and about to enter kindergarten.

The doctor’s office was cold and sterile, that I remember well. A nice lady beckoned me into a cushioned room with stuffed animals.

Large headphones were placed on my head before the doctor started speaking into the microphone. I could see his lips moving through the window, and buttons being pushed, but only a few sounds reached my ears.

Sometime later, my mother brought me back to get my hearing aids fitted. She chose the color: neutral, so as not to draw attention to the foreign machinery looped around my ears.

From then on, outside of medical appointments, my family only brought up my hearing aids with a pregnant ellipse of shame before it.

My grade school peers suffered no such embarrassment in calling out my alien attachments. “What ARE those things??” was the first question asked, never followed up by asking my name.

On the other hand, the teachers played the same pretending game as all the other adults in my life. My hearing aids, and by consequence, my Deafness, was the Thing That Shall Not Be Named.

Social model vs. medical model

This dichotomy of the two different shame-based narratives I internalized surrounding my disability is the epitome of the medical model. According to the medical model, once those hearing aids were stuck into my ears, I was “fixed,” a.k.a no longer Deaf. The problem (my disability) was gone. This framework was perpetuated by my parents, adults around me, and my peers who listened to their parents.

Never mind that I was still very much Deaf and in dire need of accommodations. Until college, I didn’t think of myself as disabled, but rather as someone who just needed to try harder.

When I went to my first Deaf social at the age of 18, I saw the social model in play before my eyes. With the barriers of speech and lipreading removed, the signers communicated at lightning speed. Even as a beginner, I left feeling rejuvenated rather than tired — contrary to the utter exhaustion I normally felt after family gatherings.

Thinking back on my school years, I grew angry, realizing the access I missed out on.

Because I did not learn ASL or have an interpreter, I had to teach myself everything outside of the classroom. Since teachers didn’t put closed captions on movies, I had to copy my neighbor’s answers. If I had gone to a Deaf school rather than a hearing one, I could have gone to someone else’s birthday party (even if their mom didn’t make them invite me).

Under the medical model, I was a wayward dandelion head that fell through the cracks. Only because I am stubborn as a weed did I still grow, stunted as I was by inaccessibility.

Whereas the medical model says I am disabled by my disability, implying that being disabled in this inaccessible world is my cross to bear, the social model says that I am disabled by the inaccessible world, not by my disability.

The social model puts the blame on society for not meeting me where I’m at. The medical model assigns the blame to me if I am flailing.

Don’t get the semantics wrong. I’m aware that I cannot hear. My neurodivergence indeed prevents me from being able to do certain things, such as navigating around a new area. Being disabled is tough, but the pity towards disabled people is misplaced.

Shifting the burden

While I will always make space for other disabled people to be vulnerable and honest about the struggles of being disabled, many of those same struggles would not exist if the world were accessible.

If our current socioeconomic system took care of everyone regardless of their ability to contribute financially, disability would be seen in a neutral eye.

The problem is not my disabilities but the fact that non-disabled prejudice against disabled people continues to keep us from getting jobs, securing affordable housing, immigrating abroad, being able to retire, accessing healthcare, having children, traveling, and so much more.

I don’t want your sympathy; I want remote and flexible work for all. I don’t want your “acceptance;” I want disability benefits to pay a livable wage and not take years to receive. I don’t care if cochlear implants worked “really well” for your nephew; my Deafness is not the issue here.

Institutionalized ableism restricting our access impacts us far more negatively than our disabilities do.

Instead of writing someone off as a burden to society because they do not work, ask why they cannot work, and, more importantly, why they need to in order to live a decent life. A crucial part of eliminating internalized ableism is untangling people’s worth from their performance under capitalism.

The reality of being disabled by society

Being disabled in a world that isn’t built for you is like being caught in a rip current. You can come up for air for only a moment before being pulled back into the ruthless sea.

It is an endless cycle of trying to preserve yourself: your physical health, your mental health, your relationships, your finances — only for constant ableism to make maintaining all those simultaneously impossible.

I often question how much better my mental health would be, for one, if my rights weren’t being violated daily. If on my days off, I could relax instead of contacting lawyers.

When I or other disabled people share our stories, the appropriate response is not to peddle an essential oil MLM or flood the comments with disbelief. These things happen regularly for disabled people — but it doesn’t have to be this way.

Conversely, when I accomplish something, it is not despite my being disabled.

I do not deserve extra applause because I managed to learn a new language, run a race, or write an article even though I am disabled. This phenomenon of finding disabled people inspirational for doing ordinary things is referred to as inspiration porn — a media trope that disregards the very real barriers we face.

Our stories should serve as a wake-up call to how inaccessible and ableist our society is. You can feel bad for what I went through. You can admire my resilience.

But in the back of your mind, I want you to think about how much easier my life could have been not if I was not disabled, but if we lived in an equitable society that met the accommodation needs of disabled people.

I need accessibility, not a cure. We have got to move on from an understanding of disability that dates back to the 90s. Companies ought to prioritize accessibility before disabled people show up for an interview.

Frankly, I’m tired of advocating for such basic things.

Disabled people make up a quarter of the world’s population, depending on whether you include temporary disabilities such as pregnancy or recovering from surgery. We are the only minority population that one can move into at any time, and that all of us are guaranteed to move into as we age.

I’d say it’s about time for renovations to a world inaccessible to 25% of us.

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