I received one of the biggest surprises of my life in July, on the 30th anniversary of the Americans with Disability Act, or ADA. I learned that I was to be featured in an Instagram campaign by none other than former president Barack Obama highlighting my activism around autism and disability. My natural reaction was one of both unexpected shock and awe.
Politics aside, it is a tremendous honor to be mentioned by a president of the United States. My brand of autism means that I am not only a minimally speaking autistic, but I also have other significant challenges and support needs that impact my life pretty much every waking moment. An acknowledgement from a president of the United States was almost like a validation that I may, in fact, be doing something right, and it made me feel that lives like mine are lives that have value to society and have worth.
Thirty years ago, in 1990, another president, George H.W. Bush, signed the ADA into law, declaring, “Let the shameful walls of exclusion come down!”
For disabled students like me on campus, the 30th anniversary is a momentous milestone, as we were born into the ADA generation. For many of us, the ADA is the very reason we are able to study at a top-notch university like UC Berkeley today.
Ironically, I did not know much about the ADA while growing up, even though the onset of my autism was in early childhood. Mine is a case of regressive autism, meaning I met all my developmental milestones till 18 months, including eye contact and speech, then lost the lot by age 2. Even during my later mainstream education years, I don’t remember more than a passing mention of the ADA in any of my high school textbooks. How can we expect our nondisabled peers to be our allies as adults if they are not exposed to educational materials that speak of disability during their school years? In order to change attitudes around inclusion, we need to change the quality and magnitude of narratives in school textbooks about us.
In order to change attitudes around inclusion, we need to change the quality and magnitude of narratives in school textbooks about us.
My childhood was dominated by overheard conversations about another law, IDEA, or the Individuals with Disabilities Education Act. IDEA guaranteed disabled individuals such as myself entry and education in the public school system in place of the earlier institutionalization. It was by no means perfect, judging from my ever-changing special classroom placements with low expectations from teachers who did not expect me to progress. There was also a constant state of tension for families who were advocating for access to services, better special education classrooms and most importantly, mainstreaming, or education in the same classroom as our nondisabled peers. While such laws are a giant step forward, there is much more that goes into achieving a fair and inclusive society.
In an email interview, I asked Ella Callow, ADA compliance officer here at UC Berkeley, to describe the ADA in layman’s terms for those who are not familiar with it. She explained that the ADA was a federal remedial civil rights law for people with disabilities. As a law, it’s both prohibitive – in the sense that it is against discrimination on the basis of disability – and prescriptive, in the sense that it acknowledges that society was not designed for people with disabilities. According to Callow, for the ADA to have the desired effects, governments, businesses and employers need to make accommodations so disabled people can participate in the life of the nation. “They are the frame on which we build access to education, employment, parenting, health care, transportation, voting,” Callow said.
“When we exclude and demean disabled people, our shared humanity is lessened,” Callow added. “When disabled people are free to live in society and have the same civil rights as nondisabled people, which the ADA supports, disabled people live fuller lives and we gain, as a society, all the intellectual, cultural, artistic and other gifts of the disability community.”
According to Callow, supporting disabled people also serves a basic self-interest. Though we may not think about it, disability is inevitable as we age, so everyone will end up disabled at some point in their lives. We all want a society that will make a fair space for you and yours, and the ADA was the best tool for shaping that fair space.
Even for an autistic like me, it was only in college and after I started pursuing my disability studies minor that I came to truly appreciate what such laws meant for us as a disabled community.
UC Berkeley has hallowed ground status in the annals of disability rights, specifically in the Independent Living Movement, a movement that, according to Callow, has been “one of the most breathtakingly successful human rights movements in recorded history.”
I mourn the fact that a majority of the nondisabled students here at Berkeley are blissfully unaware of all this.
Even for an autistic like me, it was only in college and after I started pursuing my disability studies minor that I came to truly appreciate what such laws meant for us as a disabled community. In class, I found out our shocking history of eugenics against people with disabilities, or the “feebleminded.” Another president’s sister, Rosemary Kennedy, was lobotomized and sterilized so she would not pass on “defective genes.”
Callow highlighted that our legacy of eugenics has left us with a legal structure that still “results in significantly disproportionate removals of children from disabled parents and parenting relatives based solely on disability, (moreso in) Black and Indigenous families already overrepresented in child welfare systems,” despite Department of Justice guidelines that the ADA applies to child welfare and family cases.
The ADA may have been a start, but it’s still very much a work in progress.
Berkeley’s deep impact on disability rights is all the more evident when you walk the streets of the city. I have seen professor Georgina Kleege, who is blind, deftly cross the Bancroft traffic signal with her white cane. Seeing a power wheelchair user or a blind cane user is not an uncommon occurrence. Berkeley was the first city to come up with curb cuts, or the yellow ramps you find at street corners, way before laws like the ADA made it mandatory. If you stop to think about it, many of the features made for the disability community are oftentimes used more by the nondisabled community — think of baby strollers at street corners, or the ramps you use when dragging the wheeled luggage to your dorms or the elevators you can use when you just don’t want to take the stairs.
Learning about what went into the making of laws like the ADA is an emotional experience for a disabled student like me, who really had no idea about its history.
Images from the widely televised “Capitol Crawl” in March 1990, when more than 1,000 people with mobility disabilities crawled up the steps of the Capitol building in Washington, D.C., were the final straws that brought about the signing of the ADA into law in July 1990.
But even prior to that had been the even more dramatic series of events leading to the signing of Section 504, which is considered to be the first anti-discrimiation civil rights legislation for disability. UC Berkeley alumna Judy Heuman, along with fellow disability rights activist Kitty Cone, led 150 people with disabilities on a 28-day sit-in, the longest in U.S. history, at the San Francisco federal building, where the offices of the U.S. Department of Health, Education and Welfare were located. Even as the activists camped inside, there was cross-sectional support for them from the outside, with the Black Panthers providing them with food.
As I read Heumann’s memoir, “Being Heumann: An Unrepentant Memoir of a Disability Rights Activist,” which was released in February of this year, one passage in particular really stood out to me.
“Part of the problem is that we tend to think that equality is about treating everyone the same, when it’s not. It’s about fairness. It’s about equity of access. And equity of access looks different for me and the hundreds of us who cannot do things the same way than it does for a majority of people who can. It involves ramps, sign language interpreters, captioning, accessible technology, personal assistants… when this is not understood, we get framed as complaining, even though we are asking for the same rights as everyone else.”
The understanding of this “equity of access” is a key issue in understanding accommodations when it comes to nontraditional disabilities like autism. As I learned in my disability studies class, removal of physical architectural barriers needed for traditional disabilities often face resistance due to the seeming dollar costs, but such measures are actually more tangible and concrete in terms of what needs to be done. Accommodations for developmental disabilities like autism, on the other hand, are more nebulous in terms of uniformity of application, as each person is unique in their level of support needs. What works for one may not for another; that is the conversation for our generation to work on.
Yes, the ADA badly needs an overhaul to suit our current times, range of disabilities, intersectionalities and technology. It also needs to incorporate more education, accountability and implementation. But, at the end of the day, it is the existence of laws like the ADA that help me understand disability justice and my autistic identity. It also allows me to not just demand a seat at the table so that individuals like me can be part of the conversations around change, but question if the table itself needs to be redefined.