Disability Visibility : First-Person Stories from the Twenty-first Century

by Alice Wong

To my younger self and all the disabled kids today who can’t imagine their futures. The world is ours, and this is for all of us.

Disability is not a brave struggle or “courage in the face of adversity.” Disability is an art. It’s an ingenious way to live. —Neil Marcus

Stories are the closest we can come to shared experience….Like

Staying alive is a lot of work for a disabled person in an ableist society,

These stories do not seek to explain the meaning of disability or to inspire or elicit empathy. Rather, they show disabled people simply being in our own words, by our own accounts. Disability Visibility is also one part of a larger arc in my own story as a human being.

There must be depth, range, nuance to disability representation in media. This is the current challenge and opportunity for the publishing industry and popular culture at large.

Disabled people have always existed, whether the word disability is used or not. To me, disability is not a monolith, nor is it a clear-cut binary of disabled and nondisabled.

Disability is mutable and ever-evolving. Disability is both apparent and nonapparent. Disability is pain, struggle, brilliance, abundance, and joy. Disability is sociopolitical, cultural, and biological. Being visible and claiming a disabled identity brings risks as much as it brings pride.

“God bless you! I’ll pray for you.” “You don’t let the pain hold you back, do you?” “If I had to live like you, I think I’d kill myself.”

God didn’t put me on this street to provide disability awareness training to the likes of them.

They think they know everything there is to know, just by looking at me. That’s how stereotypes work.

the presence or absence of a disability doesn’t predict quality of life.

We take constraints that no one would choose and build rich and satisfying lives within them. We enjoy pleasures other people enjoy and pleasures peculiarly our own. We have something the world needs.

The case for assisted suicide rests on stereotypes that our lives are inherently so bad that it is entirely rational if we want to die.

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Common causes of suicidality—dependence, institutional confinement, being a burden—are entirely curable.

Advocacy is for all of us; advocacy is a way of life. It is a natural response to the injustices and inequality in the world.

Man surprises me most about humanity. Because he sacrifices his health in order to make money. Then he sacrifices money to recuperate his health. And then he is so anxious about the future that he does not enjoy the present; the result being that he does not live in the present or the future; he lives as if he is never going to die, and then dies having never really lived.

These are battles that I shouldn’t have to fight. But since the U.S. government was designed to kill us, literally and metaphorically, the medical industry is continuing to fulfill that mission.

I was praying a lot, asking God to heal me so that I could have some sort of normality. When it looked like healing was not going to happen, I worked on compromises instead.

The label “disabled” was not one that I felt I could claim as my own; it was not rightfully mine.

Claiming that label felt like lauding myself with an extra unnecessary burden.

The truth, for many years, sat at the entrance of my throat—a lump so large that I could start breathing and living in my body only when I was finally able to swallow and accept it.

It felt like every time I asked for a service, they were like, “Fuck you, no, you can’t have that.”

It would be an affront to ask the Hearing to learn sign language. Instead they wish for us to lose our language, abandon our culture, and consider ourselves cured.

There is a persistent belief amongst abled people that a cure is what disabled people should want. To abandon our disabled selves and bodies and assimilate into a perhaps unachievable abled skin.

For many, the social model can be liberating: by locating the cause of our problems outside our bodies, we can begin to love ourselves again.

There is a danger in the cure mentality, as it can be a slippery slope toward eugenics when it is applied by abled people.

Many in the Deaf and autistic communities do not want a cure and feel that those who advocate for a cure are advocating that they not exist anymore.

Sometimes it comes down to how we see our individual disabilities: Are they an intrinsic part of who we are? Or are they an identity that comes with...

If only I don’t say I have fibromyalgia, perhaps I won’t have it.

I felt that I should simply be able to overcome them if I tried hard enough. If only I tried hard enough, disability would not be a problem.

I spend many more years hating myself for not being able to overcome my disability.

What I want to try is acceptance. I want to see what happens if I can simply accept myself for who I am: battered, broken, hoping for relief, still enduring somehow.

The price is simply too high to live chasing cures, because in doing so, I’m missing living my life.

I know only that in chasing to achieve the person I once was, I will miss the person I have become.

People need to have high expectations for people with disabilities because then they’ll give them opportunities to learn and grow.

Anyone can become disabled at any time. We are people just like everyone else.

There’s no such thing as a good institution.

(It wasn’t until 2013 that the American Psychiatric Association removed gender identity disorder [GID] from the pages of the Diagnostic and Statistical Manual of Mental Disorders [DSM].

Even if you are sick, wearing clothing that makes you look sicker is dehumanizing.

Feeling confident in one’s appearance can revolutionize one’s emotional and political reality.

People seem to have an innate ability to say the worst possible things at exactly the wrong time where illness is concerned.

The more I talked about the cancer and the stroke, the more comfortable I became with my body.

I wanted nothing so much as to tell someone all of it, every ugly, frightening thing, and for them to see me, to know me, and to comfort me.

The erasure of disabled people is one of the most common international crimes against humanity.

To have a name is to be given the right to occupy space, but people like me don’t move easily through our society, and more often than not survive along its outermost edges.

It is a privilege to never have to consider the spaces you occupy.

Asking for my family to listen to me would offer only a temporary and partial resolution—it would not be enough.

Unfortunately, we live in a society that assumes joy is impossible for disabled people, associating disability with only sadness and shame.

The face of the disability community is very white.