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

by Alice Wong

Internalized ableism—the insidious belief that I would be a better person if I were not disabled—makes me feel like an imposter as a mother.

My rage is supposed to be small. Manageable. Pretty. I am supposed to fold it down, make it something to consume—like an origami crane or a perfectly hand-dipped candle. 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 a deafblind woman. And I am angry at the world.

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.

Society paints my rage as a tantrum. It tries to label me a little girl who should go play with her dollies if she can’t keep up with the big boys and get a thicker skin.

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.

I burn brightly with my rage and I show it to the world when it suits me, when it’s appropriate. When the world needs to know that I am angry.

my rage isn’t a fire stoked by those who would harm me—it’s a fire fed by social discrimination, by a society not built to sustain me.

What I’ve learned is that it is more comfortable for able-bodied people to call a disabled person’s valid concern and fear a tantrum or a petty fit, because to agree with or to acknowledge the rage would require abled people to introspectively recognize their privilege. It would require them to understand that a disabled person has a right to be angry, not just at the specific blockade in their way but at a society that creates those blockades.

Give them no option but to consider your humanity.

Fatigue and an ungodly exhaustion are a part of many chronic illnesses. When energy becomes a limited resource, one must become adept at budgeting it wisely—using “spoons,” a metaphor writer Christine Miserandino came up with to explain living with lupus, to use energy when you have chronic illness.

Internalized ableism is so hard to overcome partially because those beliefs are so often reinforced in society. It’s not just in our heads. It’s in our daily lives and experiences…and then it gets in our heads.

We need more disabled voices not just because disabled people are brilliant and talented and have so much to offer and say but also because disabled people face an incredible amount of dehumanizing ableism that shapes and destroys their lives. And one of the best ways to combat that is through stories.

The disability community is not a football to be punted for the sake of political points, but it has indeed been relegated to that role by both Republicans and Democrats.

“rather than bend disabled bodies and minds to meet the clock, crip time bends the clock to meet disabled bodies and minds.”

I wish to be both myself and not-myself, a state of paradoxical longing that I think every person with chronic pain occupies at some point or another. I wish for time to split and allow two paths for my life and that I could move back and forth between them at will.

Crip time means listening to the broken languages of our bodies, translating them, honoring their words.

I moved from being someone who kept getting sick, over and over, to someone who was sick all the time, whose inner clock was attuned to my own physical state rather than the external routines of a society ordered around bodies that were not like mine.

I look twenty-five, feel eighty-five, and just want to live like the other fortysomethings I know.

I want to be aligned, synchronous, part of the regular order of the world.

You can spend a lot of time with someone who both others and adores you.

even when allied against a common enemy, we are considered separate. We are left in the water.

I understand why #TimesUp initially forgot about disabled people, I do. We are not there. We are not visible on the carpet, in movies, in the workplace. Our bodies are not sexualized or understood as rapeable, and even those closest to us do not understand our pay.

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

As disabled people, we are often both hypervisible and invisible at the same time.