ADA Past, Present, and Future, through the Lens of the Coronavirus
Join us on July 30 for Story Circle: Beyond ADA 30 – Impacts, Intersections & Reflecting Forward. This live-streamed discussion will bring together disability advocates in the D.C. region to reflect on the current landscape of the disability community and the road ahead in our post-pandemic world. Real-time captioning and ASL interpretation will be provided.
One of my favorite things to do is spend time at the Smithsonian’s National Museum of American History with curator Katherine Ott. I’ve taken various teams I’ve worked with over the years there on “field trips” to meet Katherine and check out what’s in the archives. We’ve looked at signs from the Capitol Crawl, tchotchkes from sanitariums, ACT UP swag, lobotomy needles, orthotics from kids with polio, disability campaign swag. This collection covers centuries of this nation’s history for people with disabilities.
Now I have to wonder, sitting at home in my rowhouse for month five of social distancing: what will be added to the archive from the coronavirus pandemic?
Disability history is America’s history. People with disabilities have existed on this continent since way before the colonizers, way before the Founding Fathers. We have always been here, and, yes, even with genetic science designed to eradicate us, we will still be here. The history of the rights movement I’ve belonged to for all my life was similar: buried in the archives, tied to shame, charity, and exploitation.
The most common representation of disability is the ubiquitous International Symbol of Access: a literal white man in a wheelchair. However, I think it’s important to note that the power of the Americans with Disabilities Act—passed thirty years ago on July 26, 2020—is that there never was a checklist for who counted and who didn’t count as disabled. The law was written in 1990, following the outbreak of HIV/AIDS, following Vietnam when so many came back with both the physical and mental trauma of war, and decades after the polio epidemic.
This allows the ADA to be very future-looking. Back in 1990, the policymakers and elders who crafted the law likely would not have predicted the kids in Flint, Michigan, who were exposed to contaminated water, the students in Compton, California, who sued for access accommodations citing the connection between disability and poverty, or the rise of chronic illnesses frequently diagnosed in women and largely disbelieved for decades like fibromyalgia, myalgic encephalomyelitis, or migraines. But people who experience all of these widely varied conditions and symptoms count as part of the 61 million adults with disabilities in the United States.
The coronavirus is showing us in real time what a massive expansion of the disability community could potentially look like. While we still don’t know the long-term impact of the virus, there is data that shows that people who survive may see changes to their cardiac or respiratory health and even face amputations or paralysis. Multiple generations lay between the polio generation and the coronavirus generation, and it is important to note that legislation like Section 504 of the Rehabilitation Act and the ADA was championed by those who survived polio. They were among the activists who fought for children with disabilities to have the right to attend public school alongside their peers. While we are seeing an expansion of the community, however, we are not seeing a parallel expansion of the rights and supports that we as disabled people are entitled to by law.
The Individuals with Disabilities Education Act (IDEA), formerly called the Education of Handicapped Children Act, is the law that provides our youth with a free and appropriate public education in the least restrictive environment. First passed in 1975, the law changed the expectations for both students and schools. While this law and the principles behind it centered on inclusion and made significant progress for disabled students, the coronavirus is having a real impact.
At this moment, national and local governments are deciding whether or not to open school buildings or to focus on online learning, and what that will look like. There are very real-world concerns that students with disabilities who benefit in multiple ways from being in the physical school building with in-person interactions will be negatively impacted by online learning. Beyond the discussions of lack of accessibility of educational hardware and software, there are concerns that disabled students will lack the additional access to support, including speech and language therapy, personal care support, and other services provided in school.
There is also the very real fear that students with disabilities—among others who need additional support, like low-income students and English language learners— may experience a COVID-related achievement gap that schools will struggle to remedy upon reopening. The thinking is that while affluent families can afford to hire online tutors and create pods of learning with like-minded folks, or send their kids to private schools which can support them with high-quality technology, students marginalized by language, poverty, or disability will fall behind and, essentially, never catch up. The gains by IDEA and the ADA in the education of our youth must not be lost by the virus and physical isolation.
Workplaces have gone virtual in many cases since the initial outbreak. The irony is, some groups within the disability community have asked for remote work for years, only to be told it was not a reasonable accommodation under the ADA. What will happen, if and when things do go back to the new normal? Will employers still support those employees who want to, or need to, work from home?
The ADA also limits what employers can ask employees about their medical history. At a time when we are just beginning to see discrimination against coronavirus survivors, there are grave concerns that this could open the door to greater rollbacks for a community that already faces an unemployment rate around seventy percent. The long-term impact of social stigma experienced by those who have contracted the virus is still to be seen, but this is exactly why the ADA did not include an explicit checklist of mental or physical impairments.
It’s critical to remember that while the ADA is in place and progress has been made, not all disabled people in this country have the freedom to move about society. Disabled people are still institutionalized, in old-school traditional model institutions, psychiatric institutions, and jails and prisons. The healthcare system in this nation often forces people with disabilities and their families to choose between healthcare and jobs, or healthcare and poverty, and neither of these choices is simple for our community. We need increased investment in home and community-based services, especially now, given the rampant outbreaks of coronavirus in nursing homes and congregate settings.
The future of disability in America depends on the lessons learned from the past. Our elders, those who passed the ADA, spent their lives fighting to get out into society, to get into school, to get jobs, to fall in love and have families. The reality of this virus is that given the lack of enforcement and sufficient funding to support the disability community, a mass increase in our numbers without an increase in our rights and resources could roll back the last century of progress. We cannot let that happen.
Rebecca Cokley is the director of the Disability Justice Initiative at the Center for American Progress. She is an alumnus of the University of California, Santa Cruz, an Adult Fan Of Lego, and the proud mother of three, and she is working on her first book.