Today Lois Curtis passed away. She along with Elaine Wilson were the plaintiffs in the landmark 1999 Olmstead v. L.C case, which jumpstarted de-segregation and de-institutionalization of the disabled. It paved the way for community based supports for the disabled.
Over the summer I also had the opportunity to be part of a White House panel discussion on the occasion of the anniversary of the Olmstead Act. The Olmstead Act is more significant than we can even think. Imagine, just a few decades ago, people with more significant disabilities (which would have included "higher-support" autistics like me) were simply put into institutions.
Problem solved for society with the disabled tucked out of sight!! Case closed!!
In fact, when I was young, families were still being advised to send their autistic child away before they grew too attached to that child.
Folks like Lois did not get to choose. She had to fight to get out of an institution.
What if you did not even have a "voice" (like many "higher-support" autistics) to protest even as your family was told that this was what was "best" for you by all the "well-meaning" professionals.
Thank you Lois for speaking up.
As a child I don't think I quite understood what institutions were. The closest I came to seeing a visual was was whatever was shown briefly in the movie, Rainman.
It was not until I got into college and began my Disability Studies courses, that I began to understand how horrifying institutions and the idea of institutionalization was for the disabled. My very first disability studies course had been with Victor Pineda.
On the very first day of class he screened a documentary called "Lives Worth Living" on the disability rights movement. One of the most shocking and horrifying scenes in that documentary had been Willowbrook, one such institution in New York housing the disabled. It showed the disabled children living in degrading and filthy conditions. The doctors at Willowbrook themselves had grown so alarmed that they had invited reporter Geraldo Rivera's to do an expose which shocked the world.
I used to think my low expectation special education classrooms were degrading enough, but I shudder to think of what living in those inhumane institutions would have been like. In fact, in the 2020 documentary Crip Camp, there is a mention of a camper from Willowbrook "who would stuff himself with food till he got sick" as he would not get adequate food at Willowbrook.
Such history makes the Olmstead Act all that more significant, and meaningful to folks like me.
"The Olmstead decision has led the government to make more opportunities for people with disabilities to get services outside of institutions. Advocates and the government use the Olmstead decision to fight for disabled students’ rights to learn in the same classroom as non-disabled students. Advocates and the government use Olmstead to fight for disabled workers’ rights to work in the same workplace as non-disabled workers, and earn a competitive wage." (
ASAN Remembers Lois Curtis)
Though we still have miles to go on disability rights on multiple fronts, I am so deeply appreciative of such disability rights icons who have hewn out the path that many of us now almost take for granted.
Thank you Lois
