It was the summer of 1990. I was three years old and transitioning from the Early Intervention program where I received services because of a genetic condition called Spinal Muscular Atrophy (SMA). When I was diagnosed two years earlier, doctors had told my parents that I wouldn’t live to see kindergarten. They were told to put me in an institution, but my parents refused to send me away to die. They were committed to giving me a typical life for as much time as I had, even though the world wasn’t built to include me.
So there we were touring a classroom that was for, in the terminology of the time, “severe and profound” special education. Mom knew immediately that this was not the place for me. Like most preschoolers, I was going to school to develop social-emotional skills, but my here there were no abled peers and my classmates would have significant intellectual disabilities and developmental delays.
My mother expressed her concerns.
The district’s response: “This is the only special ed preschool we have.”
Because they couldn’t conceive of a reality where a child needing special education services might benefit from or even be welcomed in an integrated setting.
But attitudes were starting to change. A lot of attention had been drawn to the emerging concept of disability rights with public actions like the San Francisco 504 Sit-In, the Gang of 19 public transit demonstration in Denver, the Deaf President Now protest at Gallaudet University, and the Capitol Crawl in Washington, DC.
That very summer lawmakers in Washington were debating the controversial and landmark Americans with Disabilities Act (ADA). President George H.W. Bush would sign the ADA into law on July 26, 1990. When it passed, a lot of people remained skeptical. Even my own grandfather initially believed that it unfairly forced the public to include people with disabilities in events and venues that we should have accepted we just weren't capable of accessing.
He used the example of his town’s Grange Hall. My mother asked him how he’d tell me that I couldn’t attend events with my family, but at that point, I was tiny and portable, and the stairs at the Grange didn’t seem like much of an inconvenience. Five years later, he and I (and my 300-pound power wheelchair) took a hair-raising trip down those same stairs on a sheet of plywood. My three-year-old daredevil of a sister thought the stunt was the most amazing thing ever—he and I, not so much.
My grandfather would become one of the most vocal advocates for accessibility among the Grange leadership. Today, that building has a ramp and an elevator.
Aimed to ensure rights and access for people with disabilities, the ADA has profoundly influenced the lives of millions of people like me. I have been privileged to grow up in the first generation that did not know a life without ADA. I have experienced its evolution as I myself grew to accept and live well with my disability.
I’ll post a new segment in this series each day as we approach the 34th anniversary of ADA. Check back tomorrow for more about the transformation of education and the slow rollout of meaningful change in public places.