"Rewriting the Myths, Redefining the Realities"
by Laura Hershey
By an admittedly unfair stereotype, Los Angeles seems an unlikely place to find someone like Marta Russell. After all, in this center of U.S. myth-making, the activist and author has become one of the disability rights movement’s most prominent truth-tellers. And while L.A.’s bland, media-defined accent has set the standard for “typical” American speech patterns, Russell still speaks in the thoughtful drawl of her Mississippi upbringing.
I met Russell not in L.A., but in Oakland, at a disability studies conference last June. She was there partly to promote her new book, Beyond Ramps: Disability at The End of The Social Contract. In her book, Russell challenges the disability rights movement to demand much more than access modifications. Until we attack the root causes of disabled people’s poverty, she argues, we may get our ramps, but we will never get all the way inside the door of full equality. As long as U.S. capitalism depends on exploiting the labor capacity of people’s bodies, those whose bodies are relatively “non-exploitable” will continue to be poor and marginalized.
Russell also hopes her book will challenge the progressive left to include disability rights in its agenda. She connects disability rights to issues as diverse as racism, welfare reform, health care economics, and militarism.
Beyond Ramps has already become something of a manifesto for grassroots disability community organizers. This book does
not try merely to “raise awareness.” Instead it’s a thoroughgoing political analysis, informed by keen economic literacy and a radical vision.
Q: In your book you’re very critical of the Americans with Disabilities Act, the ADA. You call it “a free-market civil rights bill.” You describe its numerous concessions to business interests and Republican ideology.
Russell: Yes, the ADA was signed in 1990, during a time when business had great control over the public agenda. The ADA was originally drafted by 13 politically conservative members of the National Council of the Handicapped, all of whom had been appointed by President Reagan. In concert with George Bush, they made certain that business had little to fear from the ADA.
Q: Given that conservative political environment, do you think a stronger bill was possible? What should our leaders have done differently?
Russell: Those in charge settled for less than what we needed to get the results that we hoped for. George Bush used the Republican leadership of the disability movement to quiet down the grassroots, who were really hurting at the bottom. He insisted on a weak law, and he got it! Bush only extended as many rights as necessary to extinguish the fire. Many compromises were made that should have been rejected.
Q: Such as?
Russell: I think the most insidious compromise had to do with health insurance company underwriting practices. The Republicans insisted that no health care reform provisions be included in the ADA. People with disabilities are painfully aware that employment is directly linked to health care. Unlike non-disabled people, many of us cannot forego health care. So if insurance companies can jack up the premiums of an employer who hires a disabled person, that makes a disabled person less appealing to an employer. I saw this [the ADA] as a great opportunity to challenge the insurance industry. But that was dropped.
Q: Can you give other examples of the ADA’s pro-business bias?
Russell: The ADA modified the job interview process, so that employers could not ask about the applicant’s disability; though they may ask if the applicant can do the job, with or without a reasonable accommodation. But the fact is, disability discrimination is as rampant as ever. After passage of the ADA, most personnel officers got enough training in the ADA to avoid making the kind of blatant mistakes that would land them in an ADA lawsuit. The burden of proof is on the applicant who’s been discriminated against. Employers have many ways to get around employing us.
Q: Do you think that most of the ADA’s weaknesses are in Title I, dealing with employment? The examples you just gave all relate to the workplace. What about Title III, public accommodations? Has greater progress been made in that area?
Russell: Public accommodations have definitely gotten better over the years. I focus on employment issues because to me, the success or failure of the ADA is linked with improving disabled people’s economic condition. We have the highest poverty rate of any minority. Our employment rate has actually declined since 1986, when one in three persons with a disability were employed. Now, only three in ten working-age adults with disabilities are employed, full or part time ,compared to eight in ten non-disabled adults. And seven out of ten say that they would prefer to be working. So it’s obvious that we didn’t get enough from the ADA to jolt us out of this historical unemployment predicament. The assumption that people with disabilities cannot do the job remains a huge obstacle.
Q: Given ADA’s weaknesses, what changes would you now advocate in order to give the ADA what you call “the power to fully deliver on its revolutionary promise”?
Russell: Women and people of color have had some employment successes through affirmative action, particularly in getting government jobs. But disabled people do not have mandatory preferred group status under affirmative action. The free-marketeer elements in the disability movement decided that all we needed was an “equal opportunity,” as opposed to affirmative action to remedy past patterns of discrimination. I think that was a huge mistake. It would definitely be revolutionary to make corporations hire us, and to prevent corporations from firing employees upon disablement. Affirmative action may be only incrementalist reform - which admittedly does not solve the question of full employment - but it has gotten some results for other minorities.
Then I think that work needs to be de-linked from health care. We need a universal, single-payer health care system, where everyone is insured. It should be disability-sensitive in the sense that it deals with the kinds of things that disabled people need, like personal assistance services and power wheelchairs - things that are required to be independent, and to work - then disabled people would no longer have to fear the loss of Medicare or Medicaid when they take a job.
Q: Tell me about your background, and about your disability.
Russell: I was born with a disability [cerebral palsy]. I grew up in the heart of the Mississippi Delta, on a cotton farm. I wasn’t segregated in my schooling. I was able to get around on a little tricycle which they gave me to get from bus to bus. So I was integrated. I don’t know whether Mississippi was just too poor to provide [separate education] for disabled people, or whether someone made some conscious choice - probably some of both.
I came of age during the civil rights movement in the South, and was right in the middle of that. I did some volunteer work for the ACLU in Jackson when they enforced the desegregation laws. I was connected with the more progressive elements, who started an underground newspaper in Jackson. I witnessed my friends having their little paper destroyed by the Jackson police, and getting beat up and bloodied in the Jackson Police Department basement. In those days, if you were an advocate of civil rights, your life was in danger.
Q: When you were involved, back then, in the movement for African-American civil rights, did you see that as being related to yourself as a person with a disability?
Russell: I didn’t see it then. But I think that my understanding of people’s circumstances was definitely broadened by my disability. I think I had much more understanding of people who were considered “different.” Even though a lot of disabled people could “pass,” to some extent, there was always a residual there of being “different.”
Q: So at the time, you didn’t really see the connection between African-American civil rights and disability rights?
Russell: No, I didn’t. It wasn’t really until much later. I worked in the film industry for a long time; and I had a child. I was, for years, completely absorbed with making a living and raising my daughter. And then I had a progression of my disability. It started imposing many more limitations on my activities than I had been accustomed to. It was really out of having to deal with those limitations that I developed an interest in disabled people as a group, in what happens to disabled people in our culture. Slowly, I met other disabled people who began to make me aware of a whole way of looking at disability that I had never really experienced.
Q: What kinds of things do you think influenced how you saw your own disability?
Russell: I had a family that really didn’t put any limitations on me because of my disability. I was expected to do pretty much what everyone else did; and I think that was a good thing. I don’t know how it would have been if I had a more severe disability. I wore braces, and I went through several operations - you know, doctors trying to correct the “defect.” But somehow, my interest in my own pursuits allowed me to get past the separateness that I felt from my peers. For instance, all my friends went out for cheerleading, and I just knew that was something I couldn’t do - but thank God I couldn’t do it! It gave me a whole other way to start prioritizing what was important.
Q: Beyond being a writer, you’ve been an activist in the disability rights movement.
Russell: Yeah, I’ve been in tune with different issues, and participated in demonstrations. I’ve gone to some ADAPT things. I’ve participated in local activism. I’ve served on the County Commission on Disabilities. The Telethon was a big thing; I organized protests here in Los Angeles for several years. Before that we challenged various things related to access. One time, we organized a demonstration against the Academy of Motion Picture Arts and Sciences because that year, they had run a particularly bad stream of pictures about disability - stereotypical and unenlightened. So we had the “Golden Turkey Awards.”
Q: You’ve mentioned being active on a number of issues related to media and popular culture - movie images, the Telethon, and so on. Is that because you live in Los Angeles? Why are those issues important to the disability community?
Russell: Obviously, people in this country watch more TV than they read. A lot of people are learning about the culture that they live in through television. But the problems are still more systemic, from our economic system, than from the culture. I think the underlying problems of capitalism permeate the other areas. I don’t think our main problem is cultural. I think our main problems are power relations based on economics.
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Copyright 2002 A&H Publishing Corporation