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

by Alice Wong

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Hereabouts, the rule is that if you’re not prepared to shoot on sight, you have to be prepared to shake hands.

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.

I keep forgetting that even people who know me well don’t know much about my world.

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.

The Qur’an states clearly in Surah 2, Ayat 185 that those who have medical conditions are pardoned,

Muslims celebrate for three days, because after thirty days of fasting, one day simply isn’t enough.

Those who cannot fast during Ramadan get to make a donation that will feed a hungry person for the duration of the holy month. If you cannot afford to do so, you should instead perform any acts of charity within your capability.

It was a town of mostly white people, so having a black woman as a teacher felt almost cultural, in a way that only sheltered white upper-middle-class children would ignorantly understand.

Art isn’t about what you see, she would tell the class. It’s about what you feel. Show me what you feel.

I grew up having every flaw pointed out to me. I grew up believing I was wrong.

I was obsessed with symmetry, obsessed with bridging the gap between the person I was and the person I felt I should be.

“It’s like when you reread the same sentence over and over again without understanding what it means,” I said finally. “That’s how I feel about my life, about what I look like.”

I want my suffering to mean something. I want this pain to matter.”

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.

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.

my appearance was my art. My body, my face, my scars told a story—my story.

Native people are often asked to define ourselves with these white supremacist, settler-created racial categories like “American Indian.” I am not an “American Indian.” I am a citizen of the Cherokee Nation of Oklahoma. I am Tsalagi.

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.”

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.

IHS is also grossly underfunded: in 2016, Congress allotted $4.8 billion for IHS, which came out to approximately $1,297 per person. For comparison, each inmate in the federal prison system receives an average of about $6,973 in healthcare each year.

This is horrifying information

Approximately 84 percent of Native women are abused in our lifetimes. More than 50 percent of us have been raped at least once. On some reservations, Native women are murdered at ten times the national homicide rate.

in the 1970s, between 25 and 50 percent of people with wombs were sterilized against their will in IHS hospitals.

For a huge part of my childhood, I felt like I was a piece of clockwork waiting to 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 knew that the most important thing I had to learn—before I turned eighteen in June the next year—was to not be ashamed of who I was.

I had to practice forgiving myself.

I am not a mistake waiting to be fixed.

When I met with the prison doctor, I explained that I needed a sign language interpreter during the appointment. They told me no, we’d have to write back and forth. The doctor asked me to read his lips. But when I encounter a new person, I can’t really read their lips. And I don’t have a high literacy level, so it’s pretty difficult for me to write in English. I mean, my language is ASL. That’s how I communicate on a daily basis. Because I had no way to explain what was going on, I stopped going to the doctor.

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. They like exoskeletons, which none of us use. They don’t count as cyborgs those of us who wear pacemakers or go to dialysis. Nor do they count those of us kept alive by machines, those of us made ambulatory by wheelchairs, those of us on biologics or antidepressants. They want us shiny and metallic and in their image.

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.

Tackling systemic ableism may feel like tilting at windmills, but it is still easier to address than some kind of failing within ourselves.

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

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? How do we feel when abled people start advocating for “cures”—which may come in the form of eliminating our people entirely—rather than when the desire for a cure comes from disabled advocates?

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

Taking up space as a disabled person is always revolutionary. —Sandy Ho

Disabled and trans people have specific clothing needs that aren’t adequately served by mainstream designers.

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

In the face of what society tells us to hide, we are unapologetic individuals who want to celebrate and highlight our bodies. Instead of hiding the aspects of our identities that make us unique, we are Radically Visible.

Clothing is your second skin; it changes the way you hold yourself. I consider it armor because it has the power to give you the confidence and strength to feel comfortable in your first skin.

The reclamation of color is the celebration of disabled queers!

constantly confronting ableism is tiring work.

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

You can get used to anything if you live with it for long enough.

All the patient really wants is for you to listen to them. That’s what we all want, isn’t it? It’s one of our most fundamental drives. To be seen. To be heard. To be understood.

It wasn’t until the 1990s, for instance, that the Chinese characters used to refer to people with disabilities changed from canfei (useless) to canji (sickness or illness); the push to understand disability as a social construct has been under way for less than a decade.

I may not find joy every day. Some days will just be hard, and I will simply exist, and that’s okay, too. No one should have to be happy all the time—no one can be, with the ways in which life throws curveballs at us. On those days, it’s important not to mourn the lack of joy but to remember how it feels, to remember that to feel at all is one of the greatest gifts we have in life. When that doesn’t work, we can remind ourselves that the absence of joy isn’t permanent; it’s just the way life works sometimes. The reality of disability and joy means accepting that not every day is good but every day has openings for small pockets of joy.

My joy is my freedom—it allows me to live my life as I see fit. I won’t leave this earth without the world knowing that I chose to live a life that made me happy, made me think, made me whole. I won’t leave this earth without the world knowing that I chose to live.