By Sam Levin
By Sam Levin
By Sam Levin
By Jessica Lussenhop
By Sam Levin
By Timothy Lane
By Sam Levin
By Dennis Brown
I was diagnosed with cerebral palsy (specifically, the type called spastic diplegia) at fifteen months old. Cerebral palsy is a catchall term for a group of disorders that aren't progressive or contagious. In my case, we're not sure why I have it, although CP is common in premature babies, which I was.
As a toddler in Cleveland, Ohio, I had surgeries performed on my heel cords, hamstrings and hip flexors, to help loosen the spasticity in my muscles, which were like taut rubber bands — so tight they prevented me from walking.
I took my first unassisted steps at four years old. I didn't need a walker and didn't need a wheelchair, but in the early '80s, there wasn't really an alternative that fit my abiliities. To help me keep balanced, my physical therapist invented devices that we called "poles" — broomsticks wrapped in colorful stripes of electrical tape that were stabilized by crutch tips. (These colors changed by the season or occasion: brown-and-orange for Cleveland Browns season or white ribbon for my First Communion.)
My disability, while obvious, was mild. I couldn't walk long distances, but I could walk. Going up steps could be difficult, and many gym activities were out of the question — no rope-climbing for me! — but otherwise, I was just a precocious toddler. I attended nursery school and was taught to read. I watched Nickelodeon religiously, adored my Care Bears and Strawberry Shortcake toys and was a total brat to my younger brother.
Then came kindergarten.
When it came time for me to enter kindergarten in fall 1985, the logical next step was my neighborhood public primary school, a five-minute ride from my house. Although this was pre-ADA, it was after 1975's Education for All Handicapped Children Act, which required public schools to educate disabled children in the least restrictive environment.
Things weren't so simple, however: The neighborhood school had never had a physically disabled student attend classes there. In the past, students with disabilities who resided in my district — regardless of whether their disability was physical or cognitive — were bused to a separate school outside the neighborhood.
Before the ADA, segregating people with disabilities made it "much easier for people to solve the issues of disability," says Colleen Starkloff, cofounder of the St. Louis-based Starkloff Disability Institute. "Because then you can put all the disabled people in one place and take care of 'em. The problem with that is that you don't see people with disabilities as your equal; you see them as a group that needs to be cared for."
My story took a different turn. After visiting the school to which I would be bused, my parents didn't feel it was the best place for me. I was tested, to make sure my cognitive development was still progressing normally. After the district realized that the modifications I needed would be minor — such as, I required help on and off the school bus and extra time walking around — they accepted me into the neighborhood school.
I was lucky — I had stubborn parents for advocates and good test scores on my side. For many disabled students, access to education wasn't always a given in those pre-ADA days. (Even today, many parents will tell you the educational opportunities for disabled students are still far from ideal.)
David Newburger, a lawyer who's also the Commissioner on the Disabled at the City of St. Louis, had a very different experience when he started school in the '50s.
He contracted polio in 1944 as an infant and now uses power-assisted wheels. In first grade, he was sent to a so-called "crippled children's school," he recalls.
It wasn't much of an education. "I wasn't learning to read," he says today. "They were babysitting, which is what I think special school often does today."
Newburger's parents eventually moved closer to a one-story school. "And I had a third-grade teacher who realized I wasn't reading and taught me to read," he says.
"And if I hadn't run into her, I wouldn't have ever been a lawyer, much less everything else I do."
By the time I was about to enter fifth grade, my parents weren't the only ones challenging the status quo for people with disabilities: Congress passed the ADA right before I turned eleven years old.
Back then, the legislation wasn't on my radar. I was too busy listening to sports-talk radio, discovering boys and reading voraciously to realize it existed — much less that it would have great significance in my life.
The ADA inspired vehement responses, however. "When the law came out, law firms went into the business of consulting with companies on how to avoid the ADA," says Max Starkloff.
Starkloff, who became disabled at 21 after a car accident, cofounded the nonprofit disability advocacy organization Paraquad with his wife, Colleen, in 1970. (They've since left the organization to found the nonprofit Starkloff Disability Institute.) Now 73, he uses a power wheelchair and is on a ventilator.
He remembers maneuvering in public in the time before the ADA. "Getting off a curb, you had to go look for driveways," he says. "And if you look for driveways, you're looking for cars. You're dodging cars in the streets to get across the street. And transportation — you borrowed people's vans or you found other ways to deal with it. Or you didn't go anywhere."
Find everything you're looking for in your city
Find the best happy hour deals in your city
Get today's exclusive deals at savings of anywhere from 50-90%
Check out the hottest list of places and things to do around your city