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.

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.

Disabled people have always existed, whether the word disability is used or not.

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.

I proceed to the heart of my argument: that 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.

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.

“My heart is so small…it’s almost invisible. How can you place such big sorrows in it?” “Look,” he answered, “your eyes are even smaller, yet they behold the world.”

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.

In those moments, love appears and says: “You think you’re heading toward a specific point, but the whole justification for the goal’s existence lies in your love for it. Rest a little, but as soon as you can, get up and carry on. Because ever since your goal found out that you were traveling toward it, it has been running to meet you.”

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. I will still take a cure if it’s presented to me, but I am so tired of trying to bargain with the universe for some kind of cure. 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.

We can’t go back. We can’t go back to a time when people are moved against their will to places where they have no opportunities to learn, grow, and contribute. We need to keep moving forward.

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.

I am a disabled woman. I have learned to suppress, to fold, to disappear. When I fold down my rage, I fold down myself. I make myself smaller, prettier, easier to consume. But I am not easy to consume.

I am angry because I live in a world that does not see me as capable. I am angry because I live in a world where I am expected to keep up or sit down.

I am angry because this world? It wants me to sit back and let someone else take the wheel, and I’ve never been that kind of girl.

There’s something really horrifying about realizing people don’t see you as an adult when you are in fact an adult. There’s something angering about it, too, that people assume based on the kind of body that you live in, or the sort of marginalization you carry within yourself, that you can be an adult only if someone helps you.

This world, this society, wants to destroy me. It wants me to be small; it wants me to cower in a corner, afraid to see the light. It offers me locked doors, closed windows, and rejection at every turn.

With each closed door, with each insult, I fold. I crease. I twist. I bend. I make something out of the rage that wells up inside of my chest. It sits somewhere beneath my collarbone; I can feel it sometimes. I live in a world that doesn’t want me.

Being harassed because of my disability, being bullied for being smart, being told to be smaller because I was scaring people with my intelligence, to hide my eye because it made people uncomfortable, because my brains and my cataract weren’t ladylike enough…With each fold and crease I found poise and grace, and I found a weapon.

But disabled people don’t exist to make abled people feel better about their abledness.

“Disabled people caring for each other can be a place of deep healing,” says Leah Lakshmi Piepzna-Samarasinha in Care Work: Dreaming Disability Justice.

Independence is a fairy tale that late capitalism tells in order to shift the responsibility for care and support from community and state to individuals and families.

We also live in a country where Buck v. Bell—the 1927 U.S. Supreme Court case in which the sterilization of people with disabilities was ruled constitutional—has never been overturned.

Hannah Gadsby: “There is nothing stronger than a broken woman who has rebuilt herself.”

We will not be martyrs for a movement that denies our humanity.

We are not an afterthought. We are here. We are fighting for all of our lives. We are Black. We are Disabled. We are Deaf. We are Black. Our Black Disabled Lives Matter. Our Black Deaf Lives Matter.

You are still human no matter how much they treat you otherwise

disability is a broad sociocultural identity and experience, and not everyone thinks about disability in the same way.

In a time of destruction, create something. —Maxine Hong Kingston

We urgently need to bring to our communities the limitless capacity to love, serve, and create for and with each other. —Grace Lee Boggs