In the winter of 1990, the Congressional legislation to turn a proposed Americans with Disabilities Act into law had stalled in the House Committee on Public Works and Transportation. A lot of the systemic oppression that disabled people faced then (and still in many ways face today) is neglect rather than outright discrimination. If you (or society in general) don’t take action to make a space accessible, we can’t be there. If you block or cut the funding for programs that people need to survive, you just get people who kind of “fall by the wayside,” in the words of Dr. Anthony Fauci.
So hundreds of concerned disability rights activists descended on Washington, DC. On March 12, 1990 dozens of these protestors at the Capitol abandoned their mobility devices (wheelchairs, scooters, walkers, crutches, braces, and so on) and began to climb, crawl, and edge up the 83 stone steps of the west Capitol entrance on the National Mall as lawmakers and the general public were forced to watch the often undignified struggles people with disabilities face every day, made all the more poignant by the fact that the protesters were simply trying to access the most public symbol of our nation: the Capitol.
I was not disabled then. I am now. In the last 18 years I have learned what that means – what it means to go from having every advantage this country offers to a white, middle-class, educated professional with a career and a relationship and a luxury car and a nice apartment in a great neighborhood and really everything but a full head of hair to being what we used to call, I’m ashamed to say, a ‘short busser,’ which was what we called the disabled kids when I was in elementary school who were bussed in on these shortened school busses the size of a van to attend classes in the special bungalows which circled the playground because their disabilities meant they could not access the three story school building.
Breaking out of denial was the first step in a long journey, and that meant coming to understand, and really believe in, a non-utilitarian concept of being. As human beings, we are not defined by what we can and can’t do. But society not only says that we are, it reinforces that notion by discriminating against those who cannot do certain things, like walk. Oh, nobody was/is shouting “hey short busser” at me as I’m ashamed to say we did as children in school to the kids in the bungalows, but every building with stairs and no ramp is discrimination. So is every door without an automatic opener; you try opening a door with one hand while propelling yourself forward in a wheelchair or holding on to a cane or a walker to remain upright with the other! The first thing I had to do was realize and then accept the bungalows were now for me.
That acceptance slowly turns into anger – anger at the injustice of being denied something that is not only available to most everyone else but which they take for granted. Some people with disabilities can and do become stuck in this stage; they are very bitter. Others, and I’d like to think I am one, move past the anger to become reluctant activists, advocating for disability rights as a matter of self-care and of social justice. For me, I had to become educated in this new world I now inhabited, and I am a reader. My reading list included:
- Disability Theory (Corporealities: Discourses Of Disability)
by Tobin Siebers - Care Work: Dreaming Disability Justice
by Leah Lakshmi Piepzna-Samarasinha - The Future Is Disabled: Prophecies, Love Notes and Mourning Songs
by Leah Lakshmi Piepzna-Samarasinha - Sitting Pretty: The View from My Ordinary Resilient Disabled Body
by Rebekah Taussig - Disability Intimacy: Essays on Love, Care, and Desire
by Alice Wong
It was while reading Rebekah Taussig’s book that I first experienced access intimacy, where because someone is dealing (or has dealt) with the same thing you are, you feel validated. Moreover, not having to ask for every single thing I need because someone else understands (intuitively, intellectually, or experientially) is a way of being seen that is truly beautiful and life-affirming. But empathy alone is not enough without actions of solidarity.
Back at the Capitol, about 1,000 onlookers watched as members of ADAPT (Americans Disabled for Accessible Public Transit, now known as American Disabled for Attendant Programs Today) threw themselves out of their chairs, jettisoned their assistive devices, and began to crawl, slowly, painfully, with great effort up the steps. Some did the “butt scoot,” where you use whatever strength and function you have in your arms to propel you, sitting on your ass and dragging it along while facing the opposite direction, onward or upward; some did the “crab,” where you fold your arms at the elbows and use your forearms to pull the rest of your body forward in a kindof sliding motion. I’ve done both, privately, on the floor, shaking my head in disgust and thinking ‘so this is what it has come to.’ That was in private; I can only imagine how humiliating, how dehumanizing it must have felt that day to people like then 6 year-old Jennifer Keelan, who crawled up the steps in public to represent herself and everyone else who couldn’t be there:
“For me at age six, this was the first time that I ever had seen people with disabilities like myself fighting for their rights,” says Keelan-Chaffins, who continued her activist work and helped develop the children’s book All the Way to the Top about that day. “I realized these people with disabilities are fighting for their right to be acknowledged and accepted…and I can too, and I want to be a part of that.”
“It’s a dramatic event,” says Lennard J. Davis, a professor of disability studies and medical education at the University of Illinois at Chicago and author of Enabling Acts: The Hidden Story of How the Americans with Disabilities Act Gave the Largest US Minority Its Rights. “You can’t watch that without being well aware of the difficulties of people with disabilities when they confront obstacles like stairs.”
This event, which forced Congress and America to see us, came to be known as the Capitol Crawl. The Americans with Disabilities Act (ADA) was passed by Congress that summer and signed into law by President George H.W. Bush on July 26, 1990. The Capitol Crawl is considered an iconic event in US civil rights history and a watershed moment in the disability rights movement. It also stands as a reminder of the importance of fighting for equal rights for everyone and the power of citizen activism in our country.