When my kid was eighteen months old, and we were still a year away from the diagnosis that would give a name to his speech delay, I got a head start on disability awareness through a work project.
In the spring of 2001, I was hired as the project historian for a multimedia theatre production based on the writings and reflections of Sam L., a local 56-year-old man with cerebral palsy.
Born in 1944, Sam grew up during an era of incredible transformation for those with disabilities in this country, and his stories reflected those changes. I was brought on to collect information, photographs, and video clips to provide key historical context for Sam’s story.
Sam’s life experiences revealed much about the struggles of living as a quadriplegic man at a time when it was extremely difficult for him to gain access to just about everything. But Sam smiled often, proud of his successes in beating down stereotypes. With humor and a bit of sarcasm, he reveled in telling stories of love and friendships, pets, travels, and family.
Just sitting with Sam, asking about his family photos and hearing his stories in his halting speech patterns or through the use of his keyboard device, he taught me so much that I didn’t even know I didn’t know. This was perhaps the first time I’d taken the opportunity to listen to someone who experienced life so differently from me.
I was enthralled too, during my supporting research, to learn about the development of the disability rights movement—events I’d never really thought about before, and the outcomes of which would ultimately have a direct impact on my son’s life.
Sam talked of how his father left when he was a baby. “See, some people can’t handle having a handicapped child. That’s no secret.” My research revealed that at this time in U.S. history, long-standing negative attitudes and lack of understanding about disability were beginning to be challenged by new advocacy groups, such as United Cerebral Palsy. These groups, established by parents, aimed to combat the fears that kept their loved ones with disabilities from being fully accepted in their communities. Sounds pretty familiar now.
When Sam told of his “homebound” schooling that was the only option for his education as a child, I brought in information about the obstacles to education in the years before the Education for All Handicapped Children Act (now the Individuals with Disabilities Education Act (IDEA)) passed in 1975. I didn’t know then how much of that law I would know by heart in the years to come.
I searched for photographs of the state institution that Sam’s grandparents helped him to avoid, and learned about the campaigns in the 1960s to expose the inhumane conditions at these horrific sites, where people with disabilities lived against their will often in squalor and neglect.
Sam joined the nationwide independent living movement in the 1970s as people with disabilities demanded the right to make their own choices about where they would live and work. Even as he moved from group homes into apartments and shared housing, Sam still had stories of abusive, negligent or outright thieving caregivers.
But, through it all, Sam was resilient:
“I accepted my disability when I was seventeen. A lot of people have something happen to them, end up in a wheelchair and they blame everybody else. But I don’t believe in that. Get off your wheels and do something. Some people have others around them to get them a home or a doctor. I had to do it all. I fought to be my own responsible person.” – Sam
As Sam described years of confronting inaccessible hotels and housing, and limited opportunities for work or career, I placed his experiences in the context of others like him who fought back—demonstrating in protest marches, on foot and on wheels, and literally hammering away at curbs to protest dangerous inaccessibility on community streets.
Sam was almost thirty years old by the time the first civil rights law for people with disabilities was passed in 1973. Section 504 of the Rehabilitation Act recognized that the segregation of people with disabilities was not an inherent consequence of their disability, but was due to discriminatory physical and attitudinal barriers created by society.
And, four years later, with that law still not put into practice, disability activists staged a dramatic 25-day sit-in in San Francisco to demand Section 504’s delayed implementation.
As I read about this “other” American civil rights movement, I couldn’t believe that I knew next to nothing about these important, life-changing events, most of which had taken place during my lifetime.
The ground-breaking Americans with Disabilities Act was signed in 1990, following years of battles against discrimination in housing, transportation, medical care, education and employment. The ADA mandates accessibility and “reasonable accommodation” on the federal, state and local levels.
This is truly a great American civil rights story. And, of course, the fight to ensure access, awareness, and acceptance for all people is still ongoing.
I didn’t yet understand that my son would be a direct beneficiary of this movement.
A year after Sam’s play was produced, the alphabet soup of acronyms that I learned about in my research (IDEA, FAPE, 504, ADA, IEP) began to appear in our family’s lexicon. Perhaps these terms felt a bit less intimidating because of this “preview” I had working on this project. By the time this cause became personal, I already understood something about the muscle and sweat it had taken to secure those rights for my son and others like him.
For more information on disability history, check out these sites:
To be continued…
***This is Part 3 of a 5-part series in honor of Autism Awareness Month. As the parent of an autistic teenager, it’s hard to remember a time when I wasn’t “aware” of autism, since it is such an integral part of our everyday life. But there was a time – in fact, the majority of my life – when I did not know anything about autism. Throughout April 2016, I’ll be sharing a few moments from the months and years just prior to my son’s diagnosis, when the pieces of the “awareness” puzzle were just clicking into place for me.***
Read Part 1 here: THE RIBBON
Read Part 2 here: WHEN HE’S READY