Owning Up to the Pecking Order and Prejudice Within the Disability Community

BY VICTORIA MEDGYESI

What's "better?" A pumping para-body or one that's cerebral-palsy spastic?

Skin that's light black or dark black?

What's "better?" A facial deformity or a missing limb?

A fat, soft body or a trim, hard one?

What's "better?" A mind tagged mentally retarded or one labeled gifted?

A hook nose or one that's small and "refined?"

What's usually a given is this: Human judgments concerning what's hot and what's not cross all racial, economic, gender, religious, age and ability lines.

What's a little harder to get people to admit, let alone talk about for publication, is that great unspoken sea of discrimination--the internalized ranking found within each human subgroup, disability included--that often keeps the house divided as much as or more than any external political, historical or economic forces.

After all, most of us aren't comfortable admitting that we frequently rate ourselves in some way over other human beings. You know, the kind of smug assessment one makes while standing in line at the grocery store eyeing that much-fatter-person-with-the-Oreos-in-his-cart.

Or the calculated once-over given to fellow job applicants knowing full well that--all other things being reasonably equal--the most attractively normal person will probably get the job, especially if it's not one covered by affirmative action.

It's the same king-of-the-hill behavior kids with subtle disabilities sometimes indulge in when they come up against another "special" kid, maybe the one who drools over the front of her shirt. The one they call "retard" at lunch.

It's also the kind of nasty private ranking a friend and I took to extremes when we played a game of politically incorrect truth or dare: "Would you rather have acid thrown in your face or have to use a wheelchair?" We took the wheelchair. As women, we knew the gender score. With a chair, we'd still rank.

As in the world at-large, not all is equal within the disability community.

Crip Zen Revisited

At his best, Lorenzo Milam is a writer with a true gonzo spirit.

Now in his 60s, Milam--the author of Crip Zen, The Cripple Liberation Front Marching Band Blues and The Blob That Ate Oaxaca, as well as dozens of other books and articles on sex, disability and small "p" politics--takes on controversial subjects the way a matador takes on a bull.

As a thinker, he seems to have few boundaries. As a writer, no topic is too sacrosanct for disclosure or comment. As a humorist, he jokes that he's now a member of the "geezer caste." But as a man, Milam held tight to his secret sense of superiority for 15 years after becoming disabled by polio in his late teens; held tight to his "glamour boy" post-polio identity, a condition President Franklin Roosevelt had given a certain social cachet.

From the beginning, Milam's status taught him about the "entitlement" of those who inhabit the top tier; it taught him the value of being--or at least pretending to be--"better than" all others whose disability was more apparent or "less noble."

But once he reached his 30s and the effects of post-polio syndrome took hold, that same top-tier position brought him to his emotional knees and to terms with what his privilege cost both personally and politically. He says today with reluctant but searing honesty, "What all that privilege meant was intolerable suffering for others, so I didn't have to acknowledge those parts of myself of which I am most afraid."

Milam says years of therapy and personal exploration have allowed him to be more accepting of those very human thoughts, and to claim his place in the disability community. Finally, Milam says, he can relate to others whose condition is seen by both disabled and nondisabled people as less acceptable.

Even so, Milam admits he isn't entirely comfortable contemplating the subject of caste, especially when he considers the pain such disclosure could bring to some of his friends. Progress aside, Milam says he occasionally catches himself automatically sizing-up others, then silently calculating how their public behavior might reflect on him.

"Being honest about this makes me feel cruel, crass, more inhuman than I am. It makes me sound as if I'm standing on the corpses of the lower caste." Forty-five years into his disability, Milam says he's surprised there's a subject left that can make him flinch.

By Trust Betrayed

Hugh Gallagher is no stranger to the cost of crip caste as defined by the nondisabled world.

As the author of By Trust Betrayed: Patients, Physicians and the License to Kill in the Third Reich, Gallagher chronicled the extermination of the disabled by Hitler's medical henchmen. With chilling clarity, he told the story of German physicians who provided "final medial assistance" to anyone they deemed "unworthy of life."

Yet Gallagher, also the author of FDR's Splendid Deception and the in-press Black Bird Fly Away, is less sure about the existence of a caste system within the disability community today. "If there is an internal caste system, it doesn't leap forward at me," he says. "That's one of the things that attracted me to the disability rights movement. I see most people working together."

It wasn't always so for Gallagher. He says his acceptance level has evolved over the last 45 years as he adjusted--like his long-time friend Lorenzo Milam--to the realities of post-polio and life in a wheelchair. Gallagher admits that until 10 years ago he felt uncomfortable with, and often went out of his way to avoid, people with disabilities dissimilar to his own--especially those with cognitive disabilities.

"As I've come to know people from different strains of disability, I've gotten to know them as people and not as labels," he says. "We are a disparate group that comes in all shapes and sizes, but, based on my own education and evolution, I'd say I'm optimistic that many of these artificial boundaries are disappearing."

Editors on Caste

"If someone denies the existence of a caste system within the disability community," says Lucy Gwin, "they're flat out lying."

As editor of Mouth, the less-than-timid Rochester, N.Y.-based magazine, Gwin says readers regularly comment on the publication's cross-disability perspective and the feedback's not always positive. "I hear it all the time: 'I'm not like them. Why are you saying I'm like them?' We're all trying to stay on top of our own little pile, but until all of us get and give respect, none of us will get any," Gwin says. "This internal caste system is so deeply ingrained in all of us that we'll go to any length to insist we're not retarded, we're not crazy, we don't drool."

Gwin's assessment of the cost of such polarization?

"Everything. We've been colonized by the charities, colonized by the agencies, colonized by our own behavior. How f---ing stupid. How f---ing stupid that we buy into it."

Gwin admits her own bigotry occasionally gets her into trouble and, when she manages to catch herself in the act, she says the behavior out loud. "Just bringing your own personal prejudice to light helps deal with it. As for our magazine, I know the fact that we don't deal with specific information on specific disabilities cuts into our circulation.

"Too bad," she says. "Mouth is about changing the world, and this internal ranking is part of all that, whether we like it or not."

Although somewhat less vehement in his approach, William G. Stothers, editor of the San Diego-based magazine Mainstream, echoes Gwin's basic philosophy.

"From a collective view, I'd say this internal ranking has denied us unity, power and influence," says Stothers. "From a personal point of view, it diminishes our own possibilities. From a disability press point of view, it probably costs us in terms of circulation and advertisers in so far as we don't cover other groups."

Stothers says he remembers learning the power of crip caste from early on. "When I was a kid at camp, I was definitely in a higher caste and I subconsciously exercised that power against others. When I was back in the nondisabled world, I was once again on the low end of the stick.

"Unfortunately, we do to others who share our condition of disability what we complain others do to us," says Stothers. "We in the disability press rationalize not dealing with these issues, but we have to challenge ourselves. At some point, it means you have to deal with your own discomfort."

Whether people are dealing with their discomfort or simply learning to be more sensitive to the political climate is a matter of conjecture for writer Mary Johnson. Editor of The Disability Rag for 15 years and now editor of its reincarnation, The Ragged Edge. Johnson says she's seen a change over the past 10 years. Before that, people with physical disabilities didn't hesitate to voice their displeasure at being in any way connected to people with cognitive disabilities. It's not something she hears so much today.

"I don't really know what [they] think inside, but my sense is that, within the disability community at large, there is a little tiny, tiny bit more solidarity," says Johnson. "At least most are willing to admit that the problem of ranking exists."

Separate, But Unequal

Changes in solidarity notwithstanding, crip caste is still alive and kicking when it comes to who's affiliated with what specific interest or action group.

Traditionally, legislative bodies and charity groups have both divided people with disabilities into separate funding streams. There were those labeled "developmentally disabled"; there were the blind and deaf (almost always lumped together in the early days). And then there were "the others"--mostly with mobility impairments--who were seen as higher in the government-defined caste system and not in need of quite so much service, quite so much accommodation, quite so much pity.

Since much of the money for early self-advocacy efforts came from such sources, the die was cast. Many labeled "DD" joined adviser-heavy (i.e., run by the nondisabled) advocacy groups such as People First; those with mobility impairments, deafness or blindness joined self-determining governor's groups or independent living councils. In the end, these artificial divisions increased the separation of people with all kinds of disabilities from society at-large; they also fueled disability-specific competition for money and power.

Writer Stephanie Thomas, editor of Incitement, ADAPT's in-house, politically radical, disability-inclusive newsletter, readily admitted to her ignorance and ultimate surprise after attending a 1992 People First convention. "Before I came to this conference," she said, "I didn't know much about people with mental retardation. What I learned is that having mental retardation certainly doesn't mean you're dumb."

Not everyone takes the opportunity to "get it." One conference planner, a lawyer who is blind, asked the committee at-large if a People First member who'd been asked to speak at a luncheon was "smart enough to know how to dress and take a bath." When the comment got back to the guest speaker, a college-educated man with cerebral palsy, he was not amused.

"They've got more money and they don't twitch," he says. "I grit my teeth every time I get around them. I can't tell you the number of times I've picked up on the unspoken attitude that it would just be better if I stayed at home so as not to embarrass the higher-ups." Still, he didn't say anything then and prefers to remain anonymous now. "You have to get along, you know," he says.

It's a dilemma that Larry Moss, an occasional columnist for the People First of Washington newsletter, knows well. "There's a big difference between people with spinal cord injuries and the greater population of People First," he says. "In how they grew up, how they maintain themselves, what they talk about and whom they get along with. As far as what we're trying to achieve, there's little difference. As far as how people respond to us, there's a big difference."

Moss, who uses crutches and has a mild speech impairment because of cerebral palsy, is one of the "new wave" of disabled People First group advisers. One of his biggest issues is the use of the phrase "mentally retarded," a label he hears used indiscriminately by the disabled and nondisabled alike. "Many people think I'm retarded because of the way I talk," says Moss. "If I say I'm not retarded, what does that say to my friends who are slow? What does it say about my belief in my abilities if I just let it pass?" It is, he says, a crip-caste Catch-22.

It's not just a North American problem. Ralf Hotchkiss, a wheelchair designer and Third World community organizer, says attitudes among those with varying degrees of disability are basically the same in Kenya or Nicaragua. "I wouldn't say people look down as much as they simply look away," he says.

Cross-Disability Realities

"Believe me, there are moments when I think, 'Oh my God, what if ...,' and I'm not going to pretend otherwise," says Cheryl Marie Wade, a Berkeley, Calif.-based playwright and performance artist who turns personal experience and a flair for the dramatic into powerful theater filled with disability metaphor and history.

Known for her take-no-prisoners style, Wade says it would be less than honest not to admit she's grateful to be part of the "upper" caste. "From my rather privileged disabled position, I say 'yippity-do-ya-yeah' for at least one gift. Anybody who functions successfully in this half-ass system and says different is a goddamn liar. You'd be a fool to want to be otherwise."

Not that Wade approves of such bias, mind you; she's just a realist--a realist bent on social change. The first step on the road to "enlightenment," she says, is to fully admit your own prejudice. The second step is to accept that you have an obligation to recognize your privilege.

"Does it make me cringe knowing I have a level of privilege that allows me to survive in some level of comfort compared to other people? Yeah, but I'm not going to bleed too deeply," she says. "What I am going to do is use it in my work to help change along."

Wade is currently working on a new play, Gimp Moon, based in part on disability activist Sandra Jensen, a young woman who was initially denied a heart transplant because medical professionals declared Down syndrome made her "unsuitable" for such a life-saving measure. With the help of other advocates, Jensen fought back and eventually had the operation. She lived for one more year.

"Sandra was part of that ultimate untouchable caste," says Wade. "The truth is, most of us are afraid of this mental retardation shit; we're afraid of this mental illness shit; we're afraid of the gayness shit-and we're not willing to look at it because we're afraid to admit how vulnerable we are." Contemplating deeply ingrained prejudice and shame may not be easy. But given the history of people with disabilities, Wade believes, it's a dangerous luxury to ignore it.

"You may be at the top of the caste today, but with managed health care, there ain't a crip on this planet who's going to be cost-effective tomorrow. Go ahead, think you're an exception to the rule, but that suit-and-tie caste won't save you. When one of us goes down, we all go down.

"If we can recognize as a group that our issues are the same regardless of the kind of disability we have," says Wade, "we'll have the numbers we need to fight back."

Beyond Competition

"'Crip caste' rings a bell when you say it, but I can't say I've found it an influence in my own life," says Tucson, Ariz., writer Nancy Mairs, whose advancing multiple sclerosis fuels her personal essays. "On the other hand, I do know I mind being thought of as mildly deformed."

The author of Waist-High in the World: A Life Among the Non-Disabled, Mairs hits the nail on the head: Most know there's something happening, but they're not quite sure what it is.

Like many others, Mairs believes much of the problem is related to economic rank as much as it is to disability. "When I look at other people with disabilities who don't have my privileges, I don't look down, but I do feel sort of a twinge--a desire to make it possible to share the goodies that society is not quick to let go of."

"We are an enormously divided group," says NEW MOBILITY editor Barry Corbet, "especially when it comes to income. What we have in the disability community is a entire group of virtual untouchables, the people who can't in any way access what society offers." And when you throw in lavishly supported disabled vets and people who've received large liability settlements, Corbet notes, the class distinctions become even more obvious.

For those on the low end of the crip caste system, the economic/disability conundrum is a double whammy. Time and time again, studies have indicated that people labeled developmentally disabled or mentally ill are more likely than quads or paras to be poor, to have few social skills, to be living in a state institution or to be just getting out of one. Most don't have a $15,000 wheelchair, a $40,000 lift van, or equal access to education.

Apart from inciting cultural revolution--an idea some support--where does one go from here? Perhaps part of the answer can be found in writer Jamke Highwater's The Mythology of Transgression: "To achieve freedom from the constraints of someone else's notion of 'normalcy' is what turns the victim into a social threat."

Lorenzo Milam, however, sees it in more personal terms. "Eventually," he says, "what we can hope to learn is that one's greatest enemy isn't the fact of being a crip, but rather what one sees in the mirror." Milam still remembers the days he avoided others with disabilities, seeing their mere presence in his vicinity as something that could drag him down in the eyes of others.

Cheryl Marie Wade says she, too, spent years being "the exception to the rule," counting on her intellect to somehow lift her out of disability prejudice. It's an attitude she continues to confront. "It's a lifelong struggle to deal with these issues. Along the way, you might have moments of arrival, but there's no plateau, no linear progression to enlightenment. When you get those moments, just grab 'em and run with it.

"What it comes down to is basic survival," Wade says. "If you don't think we're expendable, think again. The history of people with disabilities isn't exactly a song and dance, you know."

Contributing editor Victoria Medgyesi writes from Seattle.

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