December 01, 2005

A Survivor's Manual

EDITOR'S NOTE: In January, 1980, a 4-page photocopied publication arrived in disability activists' mailboxes in Louisville, KY. It was the first issue of The Disability Rag. Two years later, The Rag -- 16 pages on newsprint -- would be nationally distributed. Three years after that, it would be featured on the front page of The Wall St. Journal.

As Frank Bowe writes in his article, The Time To Rise Will Come Again, in those days the country seemed poised for change, and many disabled activists were coalescing around the nation, forming a movement that would come together to get the Americans with Disabilities Act passed in 1990. The Rag, during the 1980s, was part of that ferment.

A quarter of a century later, some of the articles from that first year seem dated, but others seem prophetic. Many of the writers are now gone. In coming weeks, we'll be featuring a few of the more colorful early Rag writings. S. L. Rosen's "A Survivor's Manual," a multi-part series, began in the Nov., 1980 Rag.

by S. L. Rosen

In 1976, I "survived" an automobile accident. Some would say that I shouldn't have--meaning by that all sorts of curious things. Since then, I have spent all my waking hours learning the curious rituals set down by America for becoming a proper "survivor."

Some call me "handicapped"; others--at both ends of the spectrum (those who would view me only in terms of a Social Security statistic and those who would have me join the pseudo "disabled rights" movement)--called me disabled. And I read about the thinkers up at Michigan State who have thought up some new reasons why I should call myself a "handicapper."

Well, to me, all the terms are offensive. I am, first of all and always (unable to get away from the fact), a survivor. For me, and I imagine for most others like me, "survivor" is the real term that holds meaning. We are surviving, indeed; to the embarrassment of a society that can't figure out what to do with us, ghastly successes of that medical skill of patching together shards of people who, twenty years ago, wouldn't have survived at all.

What to do with us survivors has never been of much interest to anyone except the survivors themselves. And I don't care what is said about all this "handicapped rights" stuff. That's all very fine and good, but it's not doing much to change society's view of disability itself. And until that's changed, us survivors will continue to eke out an existence at the fringes of society, a society that nobody really wants us to join.

Arguments to the contrary notwithstanding, I do not believe a rights movement of any sort will help us survivors until we get our ideas together, ourselves, about what the real issues are.

The flurry over "legal" rights, the architectural barrier removal programs, the ridiculous "handicapped person of the year" awards and such, really only touch the tip of the iceberg. Until this country's consciousness is changed in regards to disability, architectural barriers will continue to exist. Laws will continue to be ineffectual; programs will continue to discriminate. To think otherwise, as a survivor, is to be either stupid, or naive, or both.

Survivors, most of us, living in nursing homes or cooped up with our birth families long after we should have begun our own households, live at the mercy of others. I live in a nursing home myself; live like a 90-year-old. Sometimes I can't believe this is happening to me; that my life is real. Most of the time, though, I am faced with living out the quiet desperation of knowing that it is only too real, and something about which I am powerless to change--until the consciousness of other survivors also begins to change --until we begin to see, collectively, what injustices we are forced to live by.

"Boy, he's bitter!" I hear you say to yourself as you read this.. And I say back to you, whoever you are (rehabilitation counselor, parent, or fellow survivor), "No, I am not bitter. I am full of hope--hope that you will listen, for once, and see what is really happening to us survivors, and cast off the Pollyanna interpretations we have all been taught to apply to survivor status. Stay with me awhile, and I will show you I am not bitter. Bitter, no; realistic, yes."

Overcoming a handicap

I want to look at this concept and examine it for what it is. In my opinion, it is one of the most damaging of all concepts taught about disability, taught to us survivors by society.

The teaching begins as soon as we begin the "rehabilitation" process. "It's important to learn to overcome your handicap as much as possible, " the therapists would tell me, so you'll be accepted, and so you'll be able to get a job and support yourself." Now, I don't know how these therapists got their training, but their training evidently didn't teach them about the doors we can't get through, the steps we can't get up, the cars we can't drive. Their training didn't deal with how we're supposed to overcome the handicap of houses we can't get into or out of, buses we can't ride. And why can't they teach us how to overcome the handicap of not having a job, not being able to even apply for a job or go to an interview in an inaccessible company? How, precisely, are we to overcome these handicaps? They haven't taught us how to do this in any, way that works.

After thinking about it a good long time, I've come to see through this "overcoming a handicap" stuff. I've come to the conclusion that my body doesn't handicap me at all compared to the handicapping created by society. I have overcome the problems I had at first with feeding myself, getting into bed, and learning to move about in a wheelchair. But I'll tell you what I can't overcome: I can't overcome society's barriers; this country's discriminatory practices, this country's apparent unconcern for getting to the root of this problem. And furthermore, I think it's a damn crime that we're expected to. But that is really what they mean when they expect us survivors to overcome our handicaps. I'll tell you what does handicap me: the lack of a job handicaps me; the lack of money handicaps me; the lack of adequate housing handicaps me; the lack of transportation handicaps me. And yet I'm supposed to "overcome my handicap." Would you look at how ridiculous this is?

Society is my real handicap. as it is for all us survivors. I'm still waiting for the rehab therapists to tell us how to overcome an unjust society.

The phrase is never seen for what it really is. "Overcoming a handicap" serves, simply, to place the burden of coping with out-and-out discrimination on the shoulders of the oppressed group--us survivors. It's as simple as that. It's a neat trick, if you think about it; it gets society off the hook quite nicely, and puts all the responsibility for society's poor behavior on the very people society is behaving poorly toward. In other minority movements, it's been called "blaming the victim." It will work as long as we survivors allow it to.

This article was originally published in the Nov. 1980 issue of The Disability Rag.

Posted on December 01, 2005