By Ben Mattlin
The Americans with Disabilities Act turns thirty-three this year! Journalist and essayist Ben Mattlin has been keeping tabs on how the social landscape has changed (and hasn’t) for the disability community since it was signed into law. As he reports in this excerpt from Disability Pride: Dispatches from a Post-ADA World, it gave a big push to the Disability Pride movement that’s been blossoming.
When you’ve grown up in a world not quite made for you or are forced into one from an accident or illness, and when you feel you should be able to do what everybody else seems to do, when you feel as if you’ve been inexplicably singled out for punishment, it can be utterly, achingly soul sinking. Worse still, it’s hard to shake. “Internalized ableism” is believing the prejudicial assumptions and expectations thrust on you by society, believing you’re inferior, undesirable, burdensome, don’t fit in, and/or in need of repairing or healing or fixing or curing. “Internalized oppression is not the cause of our mistreatment; it is the result of our mistreatment,” says the British disability scholar Deborah Marks. “It would not exist without the real external oppression that forms the social climate in which we exist. Once oppression has been internalized, little force is needed to keep us submissive.”
Another way to look at it is disability shame. “A great deal of my disabled friends hold onto the idea that we are fundamentally different from non-disabled [people],” says an unsigned 2013 post at the blog Disability Rights Bastard, which is subtitled “musings of yet another bitter cripple.” “By refusing to see ourselves simply as people, we are implying that we do not deserve to be treated as equals.” Many disability blogs focus on this. On Crutches and Spice, the activist Imani Barbarin—who “writes from the perspective of a Black woman with cerebral palsy”—observes, “Discrimination from the outside world we can recognize, but the discrimination we are taught to apply to ourselves is harder to identify.” She goes on to list some self-hating messages we tell ourselves, tagging them as symptoms of internalized ableism, such as This person is only with me because they want to be seen as a hero, or I need to make other people feel at ease about my disability.
In 2021, the vlogger and author Shane Burcaw posted a video to YouTube titled “I was ashamed of my body.” Because of his spinal muscular atrophy, he has severe scoliosis and reed-thin limbs. “Ten years ago,” he explains, shirtless, to his hundreds of thousands of subscribers, “I would go to the beach and not take my shirt or my pants off because I was programmed by society to be ashamed of the way I look.” Now, he continues, he enjoys posting photos and clips of himself in the pool or shower wearing nothing but a bathing suit. Still, even today, he braces himself for negative reactions and feels surprised when they don’t come. It isn’t easy, he says, to “overcome the belief that my body was shameful.”
As Burcaw’s story makes clear, this kind of self-doubt can happen even when you know better. You may say it doesn’t matter what other people think. You may try to bolster your self-esteem by recalling your accomplishments, the people who love and respect you. You may count the advantages your disability gives you. (No, not just the parking spaces!) You’re a creative problem solver. You know how to cope, how to be sedentary, to be patient. If you’ve had to rely on regular personal—care help—what disability columnist Mike Irvin calls his “pit crew”—you know a bit about employee management, too. Recognizing the value in such experiences—the expertise they afford—is one way of boosting self-confidence.
But it only goes so far.
In her 2019 memoir, Such a Pretty Girl: A Story of Struggle, Empowerment, and Disability Pride, New York–based activist Nadina LaSpina, a polio survivor, describes her emotional battle with society’s low expectations, how she learned from other disabled people to recognize prejudice and fight it. She participated in one of the first “disability independence” marches in New York in 1992, on the second anniversary of the ADA. (Bragging rights to the first march are a matter of some dispute. It may have been in Boston in 1990, with guest speaker Karen Thompson, the brain-injured coauthor of the 1989 memoir Why Can’t Sharon Kowalski Come Home?, which was about one couple’s fight against ableism, sexism, and homophobia.) LaSpina was one of the organizers of the 1992 New York march. Groups such as Disabled in Action, the grassroots advocacy team cofounded by Judy Heumann, had been mounting protests for years—first for the Section 504 regulations mandating accessibility in federally funded institutions and programs, then for the ADA. But once their goals had largely been met, they still had energy. They weren’t done organizing. So they began focusing that momentum into a kind of victory celebration. “The first march, though small, kindled feelings of disability pride,” LaSpina writes.
The next year’s parade grew to an estimated three thousand participants. They filled the streets of lower Manhattan in giddy celebration, and a version of the march has been repeated almost every summer since, on or near the anniversary of the ADA. There’s a clip, a montage, of the 1993 event available online. People proceed on foot, with crutches, in wheelchairs, singing and shouting and laughing. A float rolls by with a huge banner reading PRIDE. Toward the end, a succession of speakers riles up the crowd. A demonstrator named Eric von Schmetterling declares, “It’s so important for our people to show the world we are proud of who and what we are.”
Passage of the ADA may not have been the starting point for what would come to be known as disability pride, but it certainly gave it a big push. By 2015, the Disability Independence March had morphed into the Disability Pride Parade. New York mayor Bill de Blasio kicked off events by announcing he was proud that his city was “a national leader in supporting rights for disabled people,” notwithstanding the ongoing lawsuits against the city for access violations. A more recent celebration boasted some seven thousand revelers who gathered at Madison Square Park in lower Manhattan shortly after 10 a.m. and proceeded slowly to Union Square Park through early evening. Major corporate sponsors such as New York Life and T-Mobile joined in. Even in 2020, when the parade was scrubbed because of the COVID pandemic—like many other public gatherings—the significance of “ADA day” wasn’t forsaken. Some people took to calling the entire month of July Disability Awareness Month or Disability Pride Month.
About the Author
Ben Mattlin is a journalist, essayist, and author. Born with spinal muscular atrophy, a congenital muscle weakness, he has been a lifelong wheelchair user. His books include Miracle Boy Grows Up and In Sickness and In Health. His work has appeared in the New York Times, Los Angeles Times, Washington Post, Chicago Tribune, USA Today, and Vox, and on NPR. He lives in Los Angeles, California. Follow him on Twitter (@benmattlin).