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

by Alice Wong

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.

We all should expect more. We all deserve more. 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.

Collectively, through our stories, our connections, and our actions, disabled people will continue to confront and transform the status quo. It’s who we are.

He insists he doesn’t want to kill me. He simply thinks it would have been better, all things considered, to have given my parents the option of killing the baby I once was and to let other parents kill similar babies as they come along and thereby avoid the suffering that comes with lives like mine and satisfy the reasonable preferences of parents for a different kind of child. It has nothing to do with me. I should not feel threatened.

He is the man who wants me dead. No, that’s not at all fair. He wants to legalize the killing of certain babies who might come to be like me if allowed to live. He also says he believes that it should be lawful under some circumstances to kill, at any age, individuals with cognitive impairments so severe that he doesn’t consider them “persons.” What does it take to be a person? Awareness of your own existence in time. The capacity to harbor preferences as to the future, including the preference for continuing to live.

I am the token cripple with an opposing view.

God didn’t put me on this street to provide disability awareness training to the likes of them. In fact, no god put anyone anywhere for any reason, if you want to know.

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

Are we “worse off”? I don’t think so. Not in any meaningful sense. There are too many variables. For those of us with congenital conditions, disability shapes all we are. Those disabled later in life adapt. 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.

Singer is easy to talk to, good company. Too bad he sees lives like mine as avoidable mistakes.

In the discussion that follows, I argue that choice is illusory in a context of pervasive inequality. Choices are structured by oppression. We shouldn’t offer assistance with suicide until we all have the assistance we need to get out of bed in the morning and live a good life. Common causes of suicidality—dependence, institutional confinement, being a burden—are entirely curable.

The peculiar drama of my life has placed me in a world that by and large thinks it would be better if people like me did not exist. My fight has been for accommodation, the world to me and me to the world.

As a disability pariah, I must struggle for a place, for kinship, for community, for connection.

Ki’tay is a revolutionary dreamer, leader, and lover. One who prized people, prioritized love, and propelled action by empowering all.

Advocacy is not just a task for charismatic individuals or high-profile community organizers. 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. While you and I may not have sole responsibility for these inequities, that does not alter its reality.

Ki’tay did not feign to know all of the answers to the problems of the world, but he prided himself on always learning and evolving to address injustices.

This was Ki’tay’s love language. Community-centered learning, growth, activism, and healing.

He understood that each individual group’s liberation was inextricably linked to the other—that justice and liberation could only be had if we all stand together and fight for the rights and liberties of the next individual or community.

He understood that we are free when we use our freedom to advance the rights of all members of our community; or as Nelson Mandela put it, “to be free is not just casting off one’s chains, but to live in a way that respects and enhances the freedom of others.”

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.

Solidarity for Ki’tay means active resistance to the status quo—letting all people know that they are respected, cherished, valued, and loved. Solidarity also means letting them know that despite our failures, we are committed to their cause because it is inextricably linked to each of our individual and collective causes. Ki’tay believed that the time is now to seek what is just.

Martin Luther King Jr.: Human progress is neither automatic nor inevitable….Every step toward the goal of justice requires sacrifice, suffering, and struggle; the tireless exertions and passionate concern of dedicated individuals.

“I don’t understand it,” I continued. “These things, they just keep happening, and I know it has to mean something. It has to. I want my suffering to mean something. I want this pain to matter.”

I was embarrassed or ashamed, and I found myself wondering how I ever could have thought someone would think I was special. I felt the weight of the world on my shoulders; it felt as though the whole world was laughing at a joke I wasn’t in on.

She told me that appearance, much like design aesthetics, is arbitrary and exists only to assign meaning and purpose for those seeking it, but that ultimately our unique attributes are our signatures. They’re the stamps on the world that only we can leave. They’re the things that set us apart and make us beautiful.

“Being compared to Picasso may seem like an insult, but it’s an honor,” she told me. “You are a masterpiece.”

we are all more than our bodies, more than the placement of and relationship between our facial features.

Art is supposed to make you feel something, and I began to realize my appearance was my art. My body, my face, my scars told a story—my story. But I guess that’s how life works sometimes—noticing beauty only in retrospect and poetry, in silence. Sometimes I catch my reflection in the mirror and I remember the words of my teacher, beauty is subjective, and suddenly the reflection I see doesn’t feel like such a stranger.

We’ve been turned into “Americans” to justify the theft of our lands and resources, and continuing to call us “Indian” reinforces the idea that we are loinclothed savages whom Columbus “discovered.” Then there is the “Other” box. This flattening ignores that Indigenous people are not a race but rather hundreds of distinct nations with tribal sovereignty. And even when I mark one of these categories, I am still listed as “white” in my medical records. Erasing my Indigeneity ensures that I never receive the medical care I deserve.

The only healthcare available to Native people living on reservations is provided by the Indian Health Service (IHS), an operating division within the U.S. Department of Health and Human Services that’s consistently rated as the worst healthcare provider in America.

Many of these health issues are a direct result of colonialism. Our lands and waters have been polluted due to resource extraction, toxic dumping, and nuclear testing.

When there are no jobs or fresh produce, and a gallon of milk can cost upward of $10 on our tribal lands, Native people face food insecurity and starvation at epidemic proportions.

When so many of our elders die early, we cannot learn and pass down our traditions. We become only a shadow of our former selves.

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.

That was the moment in which I learned that there was something permanently wrong with me. I was not a piece of clockwork waiting to be fixed. I had lost too many pieces and would never be fixed.

I received conflicting messages: God does not make mistakes; everything God creates is perfect; God corrects the things that are imperfect.

Saying that I had a disability felt like I was adding ink to a penciled truth. The label “disabled” was not one that I felt I could claim as my own; it was not rightfully mine. I had grown up surrounded by people who undermined the severity of my disability, and so for me to claim the label, when I didn’t feel “disabled enough,” felt disingenuous.

I had to practice forgiving myself.

I had never been given the opportunity to learn to live with my disability and move through the world on my own terms.

Prison is a dangerous place for everyone, but that’s especially true for deaf folks.

There is a cyborg hierarchy. They like us best with bionic arms and legs. They like us Deaf with hearing aids, though they prefer cochlear implants. 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.

The cyborg is the engineer’s dream. The engineer steers and manipulates the human to greater performance.

Maybe this feeling of trial and error, repetition and glitch, is part of the cyborg condition and, by extension, the disabled condition.

Disabled people who use tech to live are cyborgs. Our lives are not metaphors.

I’m told by the technicians to maintain an average amount of walking on a daily basis. Don’t go overboard, but don’t be lazy, either. Stay in the middle. The insurance company could pull my data and decide whether I have used my leg enough to justify the next one.

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.

Pushback to this idea often comes in the form of the social model of disability, which states that we are disabled by society and lack of access rather than by our bodies. 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. Tackling systemic ableism may feel like tilting at windmills, but it is still easier to address than some kind of failing within ourselves.

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 a side of agony we would gladly give up?