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.

Remember, you weren’t the one Who made you ashamed, But you are the one Who can make you proud.

The word special, as it is applied to disability, too often means “a bit shit.”

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.

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 2012, an ophthalmologist at a hospital in Oxford, England, asked if I’d considered registering as partially sighted. I was stunned. The implication—the idea that I could have a disability—was so momentous that I didn’t say anything for a while.

It was not huge, a trip to Bath, but it was important because throughout my teenage years, I had never been given the opportunity to learn to live with my disability and move through the world on my own terms. Everybody else around me was scared that something bad would happen. But nothing had happened, and I felt like a winner, sitting in that café and staring into the green park of nothingness.

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.

It’s important to have people believe in you and to expect that you’re going to succeed. People need to have high expectations for people with disabilities because then they’ll give them opportunities to learn and grow.

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. Many of my friends with disabilities worry that they should not be parents; those who already are parents fear that their physical capacities negatively affect their children.

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.

In order to value others, we have to know our own worth. In this historical moment, we have to fight for the valuable lives of butterflies and moss and elders. Because our lives—and all life—depend on this.

We must move beyond our cultural beliefs that tell us we are worth only as much as we can produce. Just as each component in Earth’s ecosystem plays a vital role in supporting everything around it, so do each of us have an essential role to play in sustaining our communities, our environment, our planet.

Strength isn’t just about momentary power to jump building to building; it is also the endurance to handle what is less than ideal. It’s the gritty persistence that disabled people embody every day.