Join us July 30 for Story Circle: Outside of ADA 30 – Impact, Intersection and Reflection Forward. This live-stream discussion will bring together disabled supporters in the DC region to reflect the current landscape of the disabled community and the road ahead in the post-epidemic world. Real-time captions and ASL explanations will be provided.
Spending time with curator Katherine Ott at the Smithsonian National Museum of American History is one of my favorite activities. I took different teams that I had worked with on a “field trip” there for a few years to meet Katherine and check what was in the archives. We have seen signs from Capitol Crawl, Talkcase from Sanitarium, ACT UP Swag, Lobotomy Needle, Polio, Disability Campaign Swag orthotics for children. This collection is for people with disabilities throughout the centuries of this nation’s history.
Now I have to think, sitting in my queued house for five months social distance: what will be added to the archives from the coronavirus epidemic?
The history of disability is the history of America. People with disabilities have existed on this continent since before the colonists, before the founding fathers. We’ve always been here, and, yes, even with the genetic science designed to eradicate us, we’ll still be here. My lifelong history of the rights movement has been the same: buried in the archives, bound with shame, charity and exploitation.
The most common representation of disability is the ubiquitous international symbol of access: the literal white man in a wheelchair. However, I think it’s important to remember that the power of Americans with Disabilities Act – passed thirty years ago on July 2, 2020 – was not a checklist for when it was counted and who was not counted as disabled. The law was written in 1990 after the outbreak of HIV / AIDS, after Vietnam when many people returned after decades of physical and mental trauma from the war and the polio epidemic.
This makes the ADA look like the very future. In 1990, policymakers and veterans who drafted the law probably would not have predicted the children of Flint, Michigan, who came into contact with contaminated water, Compton, California, whose students sued for access housing, citing a link between disability and poverty. , Or the emergence of chronic illnesses that are often diagnosed in women and have been largely unbelievable for decades, such as fibromyalgia, myelogenous encephalomyelitis, or migraine. But those who experience all of these widely varied conditions and symptoms count as part of the 61 million adults with disabilities in the United States.
Coronavirus is showing us in real time what a broad potential of a disabled community can be. Although we do not yet know the long-term effects of the virus, there is evidence that survivors may see changes in their cardiac or respiratory health and may even experience isolation or paralysis. Multiple generations exist between the polio generation and the coronavirus generation, and it is important to note that laws such as Section 504 of the Rehabilitation Act and the ADA were won by those who survived polio. They were among the workers who fought for the right of children with disabilities to attend public schools alongside their peers. Although we are seeing an expansion of the community, we do not see a parallel expansion of the rights and supports that we are entitled to by law as disabled.
The Disability Education Act (IDEA), formerly known as the Disability Child Education Act, is a law that provides free and appropriate public education to our youth in the least restricted environment. First passed in 1975, the law changed expectations for both students and schools. Although this law and the principles behind it focus on inclusion and have made significant progress for students with disabilities, the coronavirus is having a real impact.
At the moment, national and local governments are deciding whether or not to open school buildings and will focus on online education and what it will look like. There are very real world concerns that students with disabilities who benefit in multiple ways from being in a physical school building with personal contact will be negatively affected by online learning. Beyond the discussion of the lack of accessibility to educational hardware and software, there are concerns that students with disabilities will lack additional access to support, including speech and language therapy, personal care support, and other services provided at the school.
There is a more realistic fear that students with disabilities who are low-income students and in need of additional support such as English language learning may feel a Covid-related achievement gap that will fight for remediation after schools reopen. The idea is that while wealthy families can hire online tutors and create learning pods with like-minded people, or send their children to private schools that can help them with high quality technology, marginalized students will be left behind by language, poverty or disability and, basically , Never catch. The gains in the education of our youth by IDEA and ADA must not be lost by viruses and physical isolation.
In many cases the workplace has become virtual since the initial outbreak. Ironically, some groups in the disabled community have called for years of remote work, only to be told that this is not reasonable accommodation under the ADA. What happens, if and when things return to normal? Will employers still support employees who want to work from home, or want to work?
ADA also limits what employers can ask employees about their medical history. At a time when we are beginning to see discrimination against survivors of the coronavirus, there are serious concerns that it could open the door to even bigger rollbacks for a community that already faces an unemployment rate of about seventy percent. The long-term effects of social stigma experienced by those who have been infected with the virus are still seen, but this is exactly why the ADA did not include a clear checklist of people with mental or physical disabilities.
It is important to remember that while the ADA is in place and progress has been made, not all people with disabilities in this country have the freedom to move in society. People with disabilities are still institutionally established, the traditional theological model institutions of old schools, psychiatric institutions and prisons and jails. The healthcare system of this nation often forces people with disabilities and their families to choose between healthcare and employment, or healthcare and poverty, and none of these choices are easy for our society. Due to the widespread prevalence of coronavirus in nursing homes and community environments, we need to increase investment in home and community based services, especially now.
The future of disability in America depends on lessons learned from the past. Our seniors, who have passed the ADA, have spent their lives fighting to get out of society, get into school, get a job, fall in love and have a family. The reality of this virus is that due to the lack of application and adequate funding to support the disabled community, a massive increase in our numbers without increasing our rights and resources could delay the last century of progress. We can’t let that happen.
Rebecca Cockley is the director of the Disability Justice Initiative Center for American Progress. She is an alumnus of the University of California, Santa Cruz, an adult fan of Lego and a proud mother of three, and she is working on her first book.