Disability Visibility summary

Imagine having to spend your life convincing other people that you deserve to be alive – that your life is valuable and meaningful. That’s what disability rights lawyer Harriet McBryde Johnson had to do on a daily basis. She was disabled, and used a power wheelchair. She had a muscle-wasting disease for over 40 years, and was extremely thin. Her spine was twisted into an S-shape, and she held herself up by resting her elbows on her knees. She was also completely comfortable in her body.

But that’s not what other people saw when they looked at her. When she was out in public, people would stop her to tell her that she was brave for leaving the house, or that if they were in her position, they’d want to kill themselves.

The church was hot and filled with people dancing and singing. June Eric-Udorie’s grandmother instructed her to soak her communion wafer in wine and place it over her eyes. Her grandmother told her that if she prayed hard enough, God would restore her sight.

For as long as she could remember, Eric-Udorie had felt like she was a broken piece of machinery waiting to be fixed. She was born with an eye condition called nystagmus that gives her reduced vision. It’s incurable, but that didn’t stop her family from praying for a miracle.

People who have bodies that don’t conform to the cultural norm are told that they should try to hide or assimilate in order to look “normal.” Think of the woman who has had a mastectomy who’s told she should wear a prosthetic breast. Or transgender people who are told they need to “pass” as a certain gender to be accepted in society.

This push toward conformity and blending in is reflected in the clothing that’s available for disabled and gender-nonconforming people. Most clothing made specifically for disabled people is designed for those who are stationary. The designers don’t seem to conceive of the disabled as people who might want to dance, or navigate a city, or go to a lecture. Most of all, such clothing isn’t designed for disabled people who want to be striking, beautiful, or flamboyant.

Artists like Vincent Van Gogh are always cited as examples of creative geniuses whose anguish made their work possible. Shoshana Kessock felt, too, that her creativity as a writer was made possible in part because of the manic spells she experienced as someone with bipolar disorder. When she was in the grip of mania, she could write 12,000 words in a night, and map out a whole series of books.

But when she was first diagnosed and went to a psychiatrist at the age of 16, those spells of wild productivity were snuffed out. He prescribed her so many different medications that she walked around in a haze. She could barely feel her emotions, never mind create art. The medication destroyed her memory and caused her to gain a lot of weight. She even dropped out of high school at age 17.

Darnell T. Wicker was a deaf Black veteran living in Louisville, Kentucky. One night he was shot multiple times by police seconds after they’d issued a verbal warning – a warning that he couldn’t hear, or lip-read in the dark.

Sixty to 80 percent of people who are murdered by police are Deaf or disabled. Over half of all male prisoners and 73 percent of female prisoners have a disability. Structural racism means that Black people are vastly overrepresented in these numbers. And yet, activist organizations like the Movement for Black Lives ignore the experiences of disabled people in their activism.

When the astronomer Wanda Díaz-Merced lost her ability to see, she thought she’d lost her career as well. Díaz-Merced studied gamma-ray bursts in the sky, intense explosions that happen when stars reach the end of their fuel and become supernovas.

Astronomers study these events by looking at the light that’s emitted during gamma-ray bursts. They’re represented visually in a kind of graph. When Díaz-Merced became blind, she was no longer able to access that data. So how could she continue her work as a scientist?

Jen Deerinwater’s identity is erased as soon as she steps into a hospital and has to fill out an intake form. There, she’s forced to check a box indicating she’s “American Indian” or “Native American” or even just “other.”

But she’s not any of those things. She’s a citizen of the Cherokee Nation of Oklahoma, one of hundreds of autonomous nations in America. Being Native isn’t a racial identity that can fit in a box on a form. 

Ricardo Thornton spent his childhood and teenage years in institutions for people with intellectual disabilities, spending most of his time at a notorious institute called Forest Haven. Forest Haven was a kind of holding cell. Thornton had to obey the instructions of the staff at all times. He had no room to make his own decisions or have a say in how he lived his life.

Forest Haven was closed in 1991 after it was revealed that staff were routinely abusive to the people in their care. But the practice of segregating people with intellectual disabilities persists. Today, over 92,000 people live in institutions.

The lights dim in the hushed theater, and dancers Alice Sheppard and Laurel Lawson roll out onto the stage, weaving beautiful dances to music with lighting and projections.

This is no ordinary show. The audience is made up mainly of disabled people. It’s a crip space, a space designed for people in power chairs, people with canes, people who are Deaf, and people who are blind. In this space, it’s the nondisabled people who feel out of place – the bipedal people who come to see that their bodies could never accomplish the same kinds of movements as the dancers on stage.