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 Alan Toy: The Voice of Polio Past and Future

He's the old-fashioned kind of polio gimp: one of the last in this country to get the disease; a former poster child and fund-raiser for the March of Dimes; appreciative of what was done for him as a child and eager to keep the money and goodwill flowing; the final flowering of the charity model.

He's a thoroughly modern crip: an actor, activist and organizer; a writer, teacher and community leader; serves on the board of almost every disability-concerned organization in Southern California; has been called a disabled urban professional, a careerist; a champion for the human rights model.

Alan Toy got polio in 1953 at the age of 3. "By the time I was 5," he says, "I was involved in fund-raising activities from being skipper-for-a-day on U.S. destroyers to drag racing to bake sales to interviews. I was the poster boy for polio in my area of the world."
That was in Key West, Fla., then a string of places until his Navy family adopted a more settled life in Winston-Salem, N.C.

Like most polio survivors, Toy felt pressure to look anything but disabled. He walked with crutches and two braces, then only one. Always less equipment, not more. Walk, don't ride.

He remembers being devastated by something his mother once said. "She looked at my legs and suggested that, since my right one didn't work, why didn't I think about getting it amputated? I was horrified. The idea was, 'Don't make just the equipment go away; make the limb itself disappear.' This from the person who did the most to teach me to be independent."

Paternalistic medicine delivered its own message. "In the early years," says Toy, "it was a lot of therapy, a lot of surgery -- straighten this, replace that, move this over there. I think now, was that all necessary?"

And all the time he was growing up, he was beating the bushes for the March of Dimes. "As a teenager," he says, "I didn't have any problem whatsoever about going out on the street corner and being the disabled guy collecting for the March of Dimes. I look back now, and I wonder, 'Why didn't that humiliate the hell out of me?' I guess it was because I recognized that they had helped me and my family.

"We've all turned our backs on the charity model now, but at the time, that was the way people gave. That's what helped polio survivors get through. Maybe in the great cosmic balance, putting myself on the street corner and collecting money wasn't such a horrible thing."

By the time he was 15, Toy had spent three years in England and been an exchange student in Colombia. As his major evolved from political science to theater direction, he bounced from American University to the North Carolina School of the Arts to the California Institute of the Arts. Acting was never an option, he says; directing was his goal.

Life, as always, worked in strange ways. "I was applying to be the stage manager of a production," he recalls, "but the director made me audition as an actor. To my chagrin, he cast me." The play had nothing to do with disability, so why should he play a part? "I thought, 'I can't do this, the audiences will freak out. The critics will slaughter me.' The audiences took about 30 seconds to get over it and the critics gave me some great reviews."

The play, he says, quickly croaked. His acting career did not, and has led to roles in M*A*S*H, Matlock, Born on the Fourth of July, In the Line of Fire and Beverly Hills 90210, among many other productions.

In true polio survivor fashion, he had disdained a wheelchair until that time. "I told people here that they should hire people with disabilities because they know how to use the equipment, for one thing. Having said that, I thought I'd better learn myself." It was one of the most liberating things he's ever done, Toy says, but it had repercussions. "When I told my mom I was learning how to use a wheelchair, she cried. She said, 'We worked so hard to get you to walk again.'"

In true polio survivor fashion, he had disdained a wheelchair until that time. "I told people here that they should hire people with disabilities because they know how to use the equipment, for one thing. Having said that, I thought I'd better learn myself." It was one of the most liberating things he's ever done, Toy says, but it had repercussions. "When I told my mom I was learning how to use a wheelchair, she cried. She said, 'We worked so hard to get you to walk again.'"

The parents of Toy's era had priorities that may seem quaint today, but they had everything to do with the disability rights agenda of the present. "It's ironic," says Toy. "Our parents based their premise on the charity model, but at the same time they were shoving their kids into the mainstream. They were saying, 'Great, we'll take the help, but my child, by God, is going to the same school as everybody else, he's going to get married and he's going to have a job and kids.'"

And when we got to a certain age, we were the movers and shakers who were living the expectations that our parents had given us. We weren't going to take anything less."

That battle, he says, goes on. "When my wife and I go out and something is inaccessible, as soon as I ask to see the manager, she just walks away. She's thinking, 'Not again. Couldn't we just go out once without the crusade?'"

Today, Toy's crusade is to promote the implementation of the ADA's Title I. "To me, that's the whole reason the ADA exists, and the rest of it is only an adjunct, an enabling process. The first title is about working, the next three are about making the playing surface level, and the fifth says: 'Thou shalt do everything that ye can to reconcile without bloodshed these problems amongst you.' The bottom line," Toy says, "is that once we've got the curb cuts and signage and transportation, then let's get people involved in the society they live in."

Today, at 45, Toy knows he's equally the voice of disability past and disability future. "I like to look for how you can provide a payback," he says. "If you get what you want, then how can you make it possible for the next person to get what they want? That's the crux of what I try to do, whether it's with the ACLU, with Paratransit Services or my work to get organized labor involved in the ADA. I try to put it out there that, if you let us get to the table, we won't just eat, we'll help you set it and do the dishes afterwards."
by Barry Corbet

STANDOUT STORIES FROM PREVIOUS ISSUES (source: New Mobility, March 1996)

last update: 04-08-06
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