Electric EDGE
Web Edition of The Ragged Edge
January/February 1997
Electric Edge

My Own Private Roosevelt

By Cass Irvin

FDR It is commonly believed that the purpose of Roosevelt's Warm Springs Foundation (which became known as the March of Dimes) was to find a cure for polio. Prevention was a goal. But treatment -- which Roosevelt often explained meant making people's lives better -- was really uppermost in the President's mind.

This became clear to me from reading his speeches connected with Warm Springs and the documents prepared under his supervision. And what 'treatment' meant also changed over the years. For Roosevelt, the goal of treatment seemed simply to be to make one as productive as one could be.

So what is "cure"?

What is it that a significant number of people with disabilities fervently seek? And that society still believes we so desperately need?

"Cure" can actually mean many different things. But we don't usually reflect on that. By the time I got polio in the 1950s, "cure" in almost everybody's mind meant only one thing: to eradicate the disease. To preserve normalcy.

But for me, even then, it meant something different than that. I remember lying in bed at night when I was little, trying to go to sleep, uncomfortable, having to go to the bathroom, and not wanting to call Mom -- not wanting to have to hear her sigh, hear her moan, "Oh no! Oh, my, I'll have to get up," -- not wanting to hear Daddy snap, "What's the matter? What is it? What is it?"

Instead of having all that happen, I'd try to occupy my mind so I wouldn't think about needing to go to the bathroom. I'd gone to Sunday school enough to have some idea that miracles sometimes did happen. If you prayed. So when I was awake trying not to think about calling Mom, sometimes I'd pray, too -- except for me it was more like making a wish. Did I wish to be cured? In my fashion.

I thought about the kids I knew from Warm Springs and what some of them could do. I thought about the things I could do and the things I couldn't do. And I thought about the things I really wanted to be able to do. Like get myself to the bathroom.

I knew people all over Warm Springs who didn't walk; to me, walking was no longer that important. I wasn't an adventurous kid; I didn't need to climb mountains, I'd reason. If I could just get around by myself, that would be OK. I saw kids at Warm Springs getting around fine in their wheelchairs, pushing themselves. Some of them seemed cool. A straight back, good arms and good breathing would be things to wish for. If you had those you could handle yourself, get yourself around, dress yourself. You could get yourself to the potty when you needed to. That was the most important thing.

Sometimes my wishing would cause me to fall asleep, and then I'd dream. In the dream there'd be an angel. The angel would tell me I could have one wish. I'd ask to not have polio -- that was expected, of course; but, as I knew would happen, the angel would tell me, "You can't have that. That's too big a wish. Ask for something smaller."

I'd be prepared for this. What I wanted, I'd say, was a straight back and good arms. But then the angel would tell me that was "too big a wish" too. I was to ask for something smaller still. In the dream, the back would quickly become expendable (I knew people with crooked backs who got around by themselves); I would scale back my wish to "just arms." That was all I wanted, I'd tell the angel.

Usually I'd wake up before I got to "one arm, just one arm." And when I realized I still had to go to the bathroom, I knew I hadn't gotten cured.

I n Cures: A Gay Man's Odyssey, Martin Duberman recounted his "pre-Stonewall liberation years." It reminded me a lot of where we are now in my own movement. "A few brave souls had publicly declared themselves and even banded together for limited political purposes," he wrote, "but the vast majority of gay people were locked away in painful isolation and fear, doing everything possible NOT to declare themselves. Many of us cursed our fate," Duberman continued. "[we] longed to be straight. And some of us had actively been seeking 'cure.'"

Disabled people today were like most gay people had been not too long ago, I thought. We were seeking "cure" for our differences, cure for that part of ourselves society found offensive. I wondered how many groups had been set up to cure homosexuality, how much money had been given over to the effort. I felt it wasn't coincidental that society had tried to cure us both. Society sees neither of us as our own identity. It sees us as "failed normals" and it wants us to return to being normal.

Do women want to get rid of that part of themselves that is not like men? Maybe at one time some women did; but the women's movement has been going a long time now and we've learned better. Do blacks want to be white? Before there was a civil rights movement, a black pride movement, many certainly did. Do gays and lesbians still want to become straight? Do they want to have taken from them that very thing that makes them unique, that makes them bond with their brothers and sisters? Not any longer they don't.

But all of these people have their own pride movements. We barely do.

Cure is certainly not the most efficient way to deal with society's "disability problem." If one thing is cured, then another thing will need curing next. And there are always things to cure; new problems, new diseases. Making society open to all of us is a far more efficient solution to the problem of disability.

When Roosevelt sought cure for people, what he was seeking, I believe, were solutions. I am convinced he called himself a "cured cripple" with that understanding; for him cure meant the solution to the problem. For Roosevelt, the problem, as he perceived it, was being seen as a cripple; i.e., unable to walk. In society's eyes, he knew, that branded him as incapable. It was to get rid that stigma of being seen as incapable that Roosevelt appeared to walk. To be "cured," for Roosevelt, meant being on his feet. To accomplish this, he used leg braces and devised, with the help of his strong sons, a "walking" technique that gave the appearance of walking -- carrying in his mind the constant realization that, as a close friend once said, "if he loses his balance, he'll crash down like a tree." But people believed that he walked. For Roosevelt, that was all that mattered. That was the cure; it solved his problem.

Of course it was a solution that would have worked for almost no one else. Roosevelt was uniquely situated to have at his beck and call both his children and Secret Service men to arrange things to carry out this elaborate charade. Nonetheless, for Roosevelt, this deception was a solution -- a cure.

It is hard for nondisabled people to understand this simple truth: that we have pride in who we are. We have overcome, yes; overcome the feelings of inadequacy. We have earned our self-esteem. Nondisabled people just don't believe it.

Roosevelt family friend Bertie Hamlin's reaction to Roosevelt's own nonchalance about his disability was an example of how nondisabled people didn't understand how we feel about being disabled. In her memoirs, she wrote of an evening visit with FDR. Roosevelt "was carried into a seat at the dining-room table," the story began. "He told the [Secret Service men who had carried him in] not to return until 9:30. We wondered how he would spend the evening -- probably staying in the dining room," she continued, exhibiting that penchant of nondisabled people to wonder what a disabled person might do in a certain situation.

"[W]hen dinner was over," she continued, "Franklin pushed back his chair and said, 'See me get into the next room.' He dropped down on the floor and went in on his hands and knees and got up into another chair by himself." Instead of accepting this as normal for Roosevelt, Mrs. Hamlin had a typical reaction. It made her -- and her husband -- uncomfortable. "My husband was so overcome at such courage and seeing that superb young fellow so pleased at being able to do this," she finished, "that on the plea of hearing the telephone he went into his den for a while."

Disability does affect how you organize and shape your life. It's not necessarily a negative effect. But to other, nondisabled people, it invariably seems that it could be nothing except negative. That's what's meant by "stigma." And you can take that on; that's the effect other people's attitudes about the disability can have on you. That's negative, because it can keep you from being who you are. But it's not the disability itself that's doing that.

Do white people still believe in their hearts that a black person cannot be happy because she is not white like they are? Do men still believe that women aren't as good as men? Of course some do. Many people believe that a gay person inside must want to be cured and be normal again. Despite the gay rights movement.

Everyone wants something better out of life. We just have to convince the world that being disabled is not the worst-case scenario everyone thinks it is. I am not sure how to get this understanding across. I suspect that no matter how we put it, others not in our movement will refuse to believe that we can really have pride when we are not cured. No matter how we put it, people will insist that we are "just saying it" -- because we can't be cured.

Fewer and fewer people now believe this about gays, though. Why is that? It is because gay people have become a force to be reckoned with. Their movement seems to really be changing the way people think. Our movement has not done that nearly as well. Our movement doesn't have the passion that the gay rights movement has. That's because many of us are still trying to pass, holding fast to the gimp mystique. There are many of us for whom a "normal" body is crucially important.

Others of us have fashioned lives that no longer rely on bodily skill to bring satisfaction. For us, the choice to remain disabled should not carry with it a stigma. But it does.

W hat Roosevelt had found at Warm Springs was far more than the springs. He had found camaraderie with his fellows with polio, and he understood how that sense of community helped one. Nondisabled people didn't see that. People thought all Warm Springs was about was curing polio.

Warm Springs had at one time been "home" to me, too. I had been happy here. The kids I grew up with here, they were like me. They were my family, they were my "brothers and sisters." That's what I'd found here. Not cure. And I was sure that was what Roosevelt had found, too.

When my parents came to visit or to take me home, I didn't feel as though I'd belonged to them anymore. People who walked -- they were the Strangers.

Strangers saw this place as a hospital, an institution. They assumed (and they made me feel) that I couldn't be happy here -- because it was, of course, an institution -- and far away from home. But more than my parents' home, Warm Springs was "home" to me.

Yet when I came back for check-ups, I found I couldn't speak to my brothers and sisters here. That was because I came back with my parents, the Strangers, the people who didn't belong. When I was with them, I couldn't belong either.

I was happy at Warm Springs. But people kept taking it away from me.

Cass Irvin is a writer and director of
Access to the Arts, Inc. She is working on a book,
"The Gimp Mystique," from which this excerpt is taken.

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