May/June 1992. Volume 13, Number 2 (On-Line Edition of America's Hard News Disability Magazine) Publisher: The Avocado Press, Inc. Editor: Mary Johnson Managing Editor: Sharon Kutz Mellem Fiction/Poetry Editor: Anne Finger Recording: Tom Denston Large Print: Ramona Shaw Circulation: Ann Johnson Administrative Support: Mary Anne Ostertag Copyright 1992 by The Avocado Press, Inc (I S S N 0749-9596) The Disability Rag cannot accept responsibility for unsolicited materials. Materials accepted for publication cannot be returned unless accompanied by a stamped, self-addressed envelope. The Rag reserves the right to edit all materials. Send submissions and letters to the editor to our editorial office. Direct subscriptions and circulation inquiries to our circulation office. Editorial Office: The Disability Rag, Box 145, Louisville, Kentucky 40201, United States of America. (502) 459-5343. Circulation and Subscription Office: The Disability Rag, 1962 Roanoke, Louisville, Kentucky 40205, United States of America. Indexed in the Alternative Press Index (Box 33190, Baltimore, Maryland, 21218-0401, United States of America.) Available on Microfilm in the Alternative Press Collection of University Microfilms, 300 North Zeeb Road, Ann Arbor, Michigan, 48106, United States of America. *************** Computer On-Line Edition: While the Disability Rag reserves rights to hardcopy print media, computer users are invited to spread The Disabiilty Rag throughout Cyberspace. Please do repost and retransmit The Disability Rag. This I understand I was told when I called The Disability Rag. Bill Scarborough System Operator, The Yellow Dream Machine B B S (512) 451-3222 300/1200/2400 N/8/1 *************** Directory: May/June, 1992 Disability Rag Part One: <01> Hate, by Barbara Faye Waxman <02> Report: Just when you thought it was safe to come out about the telethon <03> Report: ADAPT takes on Chicago and AMA in May <04> Poem: Petunias, by Laura Hershey Part Two: <05> What the Doctors Didn't Want to Hear, by Carol J. Gill, Ph.D. <06> Dual Citizenship and Conditional Acceptance, by Carol J. Gill, Ph.D. <07> What A Difference A Word Makes! by John Woodward with Michael Elliott <08> Mildly Retarded, story by Robert Perretz-Rosales <09> Upcoming HBO movie "irresponsibly stirs fear" of disabled people <10> Quadriplegia: Poem by Alan F. Troop Part Three: <11> Reading department: reviews of Here and Toxic Psychiatry <12> Ragtime department: By Any other Name <13> Rag and Avocado Press Ads Advertisement: alternative formats of Rag available Advertisement: Back issues of The Disability Rag Advertisement for book, "People with Disabilities Explain It All For You." <14> Ragland department <15> "What!" department Part Four: <16> Letters to the editor <17> Classified ads <18> "We wish we wouldn't see" Department <19> General Ads Advertisement: Health Pac Bulletin *************** Headline: Hate by Barbara Faye Waxman The following article is a shorter version of "Hatred: The Unacknowledged Dimension in Violence Against Disabled People" which appeared in the October/November, 1991 issue of the Journal of Sexuality and Disability. Waxman has sent a copy of her article to the Senate Subcommiteee on Disability Policy, whose staff director, Bobby Silverstein, sent it in turn to Senator Paul Simon who introduced the national Hate Crimes Statistics Act. Simon's staff forewarned Silverstein that Congress would probably not allow an amendment to include the disability community among its protected groups. Disabled people are facing the same barriers to inclusion in this bill as women, who were also left out. We must follow their lead and organize to fight for our right to be protected and counted under hate crimes legislation. To join this effort, write to Barbara Waxman at 8883 Pico BL #127, Los Angeles, CA 90035. Article starts now With passage of the Americans With Disabilities Act, the federal government affirmed "that disabled persons have been subjected to a history of purposeful unequl treatment" in our society. This monumental piece of civil rights legislation was the result of Congress's recognition of a history of discrimination toward disabled workers, tenants, consumers, students, passengers, patients and citizens in this country. Yet ironically the government has not acknowledged the presence of a deeper layer of harmful conduct which also violates the civil rights of disabled persons: violence springing from hate. While the Bush Administration and the 101st Congress were deliberating over the ADA, they were concurrently in the process of passing the national Hate Crimes Statistics Act, P.L. 101-275. The federal government and some state legislatures, including California, Connecticut, Idaho, Illinois, Maryland, Minnesota, New Jersey, Oklahoma, Pennsylvania and Virginia have begun to respond to reports of an increase in the incidence of "anti-minority hate crimes" by passing laws to collect and analyze information regarding crimes which are motivated by bigotry and bias. As required by the Hate Crimes Act, the U.S. Attorney General is to "acquire data for the calendar year 1990 and each of the succeeding 4 calendar years, about crimes that manifest evidence of prejudice based on race, religion, sexual orientation or ethnicity . . . " [italics added]. Hate violence, as defined in the act, includes crimes of murder, non-negligent manslaughter, forcible rape, assault, intimidation, arson and destruction, damage or vandalism of property. Disabled people were not included by Congress in the list of protected classes in this major piece of hate violence legislation. Congress apparently did not think disabled people comprised a "high risk" group facing personal violence. However, states which have passed hate crime data collection legislation -- California, Connecticut and Oklahoma -- did include disability as a characteristic which places individuals at risk for hate crimes. While crimes motivated by hatred toward groups specified in the federal law are treated by Congress as social injustices, when based on disability they are seen in a wholly different light. In various criminal statutes, such as dependent adult legislation, disability-biased crimes are seen as random acts of passion rather than violence -- the presumption being that disabled people provoke and invite abuse due to their behavior or attributes. (This double standard is the same as that evident in criminal laws dealing with presumption of rape: that women tempt men and then cry, "rape.") But the truth is that anti-disability violence is produced by a whole series of ideological structures that legitimatize oppressive behavior. Disabled people face a pattern of oppressive societal treatment and hatred, much as women face misogyny, gay men and lesbians face homophobia, Jews face anti-Semitism and people of color face racism. The crimes which the Act focuses on seem to be overt and organized violent acts such as gay bashing, the Howard Beach incident, cross burnings and vandalism of Jewish synagogues and cemeteries. Sandra Lambert, a disabled feminist writer, thinks of disability-related violence as a less explicitly violent form of oppresssion. "Disabled people aren't shot down in the streets of South Africa or the urban United States. They aren't killed as they go camping with their lesbian lover. There are never TV images of disabled people being beaten, shot or set on by dogs. " Yet data about rape, child sexual abuse, incest, sexual harrassment, battery, neglect, defamation and other forms of violence directed at disabled people indicates that they are much more likely to be targeted for violence than their nondisabled cohorts. Though FBI statistics and state-collected disability- related child abuse data do not reveal the scope of violence against disabled people, other studies show appalling rates of victimization. Ongoing research estimates that sexual violence directed at disabled people is one and a half times that directed at nondisabled people of the same sex and age. Moreover, the literature on the incidence of intentional harm inflicted on disabled children shows that any factor which adances the parent's perception of the child as "different" or "difficult" greatly increases the likelihood of abuse. Studies on abused children found that as many as 70 percent of that group showed evidence of physical or mental disabilities prior to the actual abuse. There are reports that mental retardation increased by eightfold the probability of an abusive attack. Many violent acts against disabled people are overt: the vandalism and fire bombing of a community-based home inhabited by disabled adults who were threatened and beaten; the murder a few years ago of Cary Dickenson, a multiply disabled man found stuffed into the trash can of a Southern California library 9an incident deemed by authorities a cruel prank turned tragic); the abuse of a 9- year-old Northern California student with multiple developmental disabilities who was repeatedly thrown into a cold pool by the teaching staff until she went through the required swimming motion -- an instruction technnique which included forcibly pouring hot pepper sauce into the student's mouth numerous times to force her to "keep quiet;" the arson two years ago of a 40-foot wooden wheelchair ramp belonging to James Lundvall, a paraplegic who is in a coma as a result of smoke inhalation (the Denver police, who called this a "random" act, were surprised when the arson occurred again 48 hours later); and the shooting death of two-and-a-half- year-old Eric Bernstein by his mother, who contended that she did so because the boy was not responding to treatment for his multiple disabilities, and as a result had her sentence reduced from first- to third-degree murder. It has not yet occurred to the authorities that these overt acts were hate crimes. When violent crimes against disabled persons are exposed, federal resources such as the "Protection and Advocacy" system, set up to focus on institutional abuse and neglect, are supposed to help. In 1986, the Subcommittee on the Handicapped of the Senate Labor and Human Resources Committee, together with the Senate Appropriations Subcommitteee on Labor, Health and Human Services, Education and Related Agencies held three-day hearings on the treatment of institutionalized persons who are "developmentally disabled and mentally ill." The hearings were the culmination of a 9- month Senate staff investigation of conditions in state-operated facilities. "During the three days of testimony," Senator Lowell Weicker, former Chair of the Subcommittee, wrote, "Subcommittee members heard example after example of mistreatment of the nation's mentally disabled citizens. We heard from parents, advocates, administrators, journalists, employees and residents themselves. We heard of physical violence, rape, unexplained deaths and filthy living conditions. We heard of young people tied naked to the floor in four-point restraints for days, as well as other instances of inappropriate uses of restraint and seclusion. And we heard that these conditions existed in public facilities that were receiving substantial amounts of federal funding and were certified to be providing active treatment to residents." Violence toward disabled people has thus been part of the federal record for many years, and P and A's have continued to uncover abuse throughout the institutional system. Why was this evidence not utilized to ensure that disabled people were among the protected classes in the Hate Crimes Statistics Act? Why has Congress, after hearing numerous descriptions of abusive treatment tantamount to a pattern of violence, continued to treat this violence as situation-based, rather than bias based? A major reason for the consistent denial of hatred as a motivation for violence against disabled people is that we are not perceived as constituting a viable, separate group in society. A recent Louis Harris survey of disabled Americans reported that 74 percent of us feel some common identity with each other and that 45 percent see ourselves as a minority, in the same sense as people who are black or Hispanic. When hate crime policymakers exclude the disability community from the Hate Crimes Statistics Act, they ignore the evidence that disabled people in the aggregate constitute a political entity. They ignore the fact that when a disabled person is targeted for violence, she is attacked not simply as an individual but as a member of a minority group. Nondisabled people are strongly inclined to deny the success of a disabled person. They perceive it as the disabled person "making the best of a bad job." This reaction is apparently required to safeguard the nondisabled person's belief that his own appearance and capacities are important and infallible. Disabled people who present positive personality and behavior traits such as being successful, outgoing and warm may not only be helped less, but may experience more covert anger from nondisabled people. These traits, considered desirable in nondisabled people, may not be held desirable in disabled people. Successful and assured disabled people violate their "stigma role requirements of suffering and acknowledged inadequacy" -- in other words, they refuse to "stay in their place" -- and nondisabled people feel their own status threatened. These realities are important for disability rights activists and independent living advocates to keep in mind now that the ADA is law. When we step out of place, by asserting our very presence (and refusal to take our presence elsewhere), when we proclaim that we are equal and deserve the same rights as the majority, we become targets for more overt acts of hate violence. Sociologists point out that economic conditions are an important factor in the emergence of racial hatred among young people. Indeed, police believed that young people were the offenders in the arson of the wheelchair ramp and the murder of the retarded man. Those who study and treat child abuse, victims of domestic violence, rape and other violent crimes are finding that disabled people are overrepresented as victims of these crimes compared to their numbers in the population. Why should violent crimes against disabled people be treated as hate-motivated crimes? Bias crimes merit special attention because of their effect on an entire group of people. The entire class of persons represented by the individual recipient of the volence is likely to feel victimized. Although there are no studies on disabled people's reaction to violence directed at disabled individuals, there is a significant amount of writing by members of our community which suggest the effect is great. These crimes deserve to have the attention of the federal criminal justice system as it attempts to understand hate-motivated violence. When disabled people are finally included in the Hate Crimes Statistics Act, as well as enjoying the protections of other hate crime laws, people who are tempted to express their hatred toward members of the disability community will finally be on notice. Until then, however, disabled people will not have the full and equal protection of the law, and will continue to feel in danger. end of article Headline: Just when you thought it was safe to come out about the telethon Article starts here It just keeps getting deeper. For Rag readers who haven't been following the sniping war between MDA head Jerry Lewis and EEOC Chair Evan Kemp, which erupts every month or so in places like Newsweek's "Periscope" and U.S. News and World Report's "Washington Whispers," here's what's happened since our last report: As This issue of The Rag goes to press, yet another attorney for the MDA crowd is yet again threatening to take "all legal avenues" against someone in the movement for saying something untoward about Jerry. This time the someones happen to be longtime activist Sharon Mistler and the Endependence Center of Northern Virginia, which Mistler heads, for sending out an "incorrect" action alert to the disabiliy community urging letters be sent to the white house in support of Evan Kemp, who was rumored to be in danger of losing the chairmanship of EEOC over "inadvisable" statements he's made recently about Jerry Lewis and his telethon (see "Telethon battle escalates," January/February.) Kemp took another swipe at Lewis's telethon on NBC's "A Closer Look" in February and set Lewis off again. A "Washington Whispers" brief in the March 2 U.S News & World Report said Lewis had then "fired off a furious letter" to the White House, asking Bush to "disavow" Kemp. On March 23, Newsweek's "Persicope" reported a Lewis letter to Bush accusing Kemp of "misuing the power of his governmental office." Both newsweeklies had fun with Lewis in the process, U.S. News with a cartoon face of Lewis brandishing a hateful letter, Newsweek by headlining its piece ""Jerry Lewis: Points of Spite" (Lewis had reminded Bush in his letter that "If ever there was a Point of Light, . . . I'm it!"). Newsweek quoted Administration sources saying Kemp would "likely lose the chairmanship" of the Commission. That set the disability commnunity to mounting a letterwriting campaign to the White House, to counter the letterwriting campaign Lewis had urged on his followers. Meanwhile, MDA issued almost-daily press releases to mainstream media about how bad and disrespectful Kemp and the movement were being to poor Jerry. An alert issued in late March from Mistler's ECNV noted that "Jerry Lewis is requesting Mr. Kemp's resignation" and called on people to write the White House in support of "the highest ranking disabled apointee" in the Administration. Less than 48 hours later, Mistler had heard by letter from MDA lawyers, pointing out that Lewis had never actually asked for Kemp's "resignation" and warning Mistler that if she didn't issue a "corrected alert" -- with a copy to the attorney to "verify the retraction" -- MDA would be "constrained to pursue all legal avenues against you and ECNV." Activists pointed out drily that even if the alert was "misconstrued" to say "what Lewis didn't say," it was "understandandable that such an impression could have been left" by Lewis, who, in addition to constant press releases, had also written Senators about the matter. As The Rag went to press, Mistler had gotten her own attorney for the fight, and she and others were still trying to identify the spy who had faxed the alert to MDA. These kinds of crybaby tactics by MDA are likely to escalate as the MDA Labor Day Telethon approaches, and plans form for an ADAPT-style action in Las Vegas over Labor Day weekend. Mistler and ECNV are only the latest targets of Lewis's legal staff, who appear to have nothing more pressing to do than harrass grassroots organizers by threatening to investigate their group's tax status (pretty silly when most of the groups don't even exist on paper!). Harrassing Kemp for exercising his First Amendment rights, hounding journalists like "Living with a disability" columnist Dianne Piastro (there are even reports of MDA's legal eagles pouncing on reporters for major newsweeklies) and intimidating grassroots organizers seem to be MDA's style. There will, no doubt, be others. One target of harrassment we talked to had a simple explanation: Lewis and MDA are fighting back because they're finally scared: scared that, because of the ruckus the movement is raising, the public is finally wising up to the scam the telethon really is. End of article. Headline: ADAPT takes on Chicago and AMA in May Article starts here. American Disabled for Attendant Programs Today (ADAPT) organizers from across the nation will arrive in Chicago Friday, May for a mass action on Mother's Day. As the battle to get government to quit forcing people into nursing homes heats up, this action will be the biggest for the movement since last October's action against the American Health Care Association (nursing home operators) saw ADAPT protest in Orlando. In that action, over 70 protesters were arrested and jailed. ADAPT organizers urge anyone who can drive, fly, roll or crawl to Chicago to make it a point to get in on Friday for a big organizing meeting on Saturday, May 9 (see box) to finalize the week's protests at headquarters of the American Medical Association. Why is ADAPT targeting the AMA? Because doctors are key players in our battle to wrest control of our lives from nursing homes -- players on the wrong side. Doctors own nursing homes; they force patients into nursing homes; their powerful lobby could force Medicaid to require that states offer attendant services, says ADAPT. ADAPT has written the AMA demanding that the medical group make a public disclosure of their members' ownership of and investment in nursing homes -- something ADAPT compares to "Southern white plantation owners' ownership of slaves." demanding AMA members divest themselves of nursing homes and other institutions in three years. "No one can be incarcerated in a nursing home without a doctor's signature." ADAPT is demanding the AMA decrease nursing home admissions by 25 percent and demand alternatives for their "patients." To nobody's surprise, the AMA's response was merely to try to find out who's on ADAPT's board. (It seems the current tactic against disability groups is to try to destroy their organizations; see previous article on the telethon). So ADAPT plans to take on the medical lobby at its headquarters in Chicago -- and to make its point particularly clear, will hold its first action on Mother's Day, May 10. Why Mother's Day? Because the vast majority of people in nursing homes are somebody's mother, says ADAPT. Far more women than men are put in nursing homes. ADAPT also wants to dispel the myth that old age is the reason old people are incarcerated in nursing homes. It's not because they're old -- it's because they have disabilities. "That system needs to be attacked: It is political oppression funded by tax money." ADAPT says a national attendant services program could be put in place immediately by redirecting current Medicaid dollars. This could be done simply "by amending Section 1915C under Title XIX of the Social Security Act and making the provision of "home care" mandatory for states receiving Medicaid dollars. "Nursing home care is now mandated for any state receiving Medicaid," says ADAPT. "Home care is still optional." ADAPT anticipates a diversion of $5 billion in tax dollars in the first three years if such a mandate were put into place, as nursing home admissions declined and the range of community-based services rose to meet demand. "Nobody wants to live in a nursing home," says ADAPT. End of article. Start of announcement: Join the Mother's Day Assault on the Nursing Home Industry Arrive Friday, May 8 Mandatory training session Saturday, May 9 Actions and protests May 10-13 Hotel rates range from $19 a night to $62. You must make arrangements through Robin at Denver ADAPT; 303/733-9324. For airline discounts, check with Robin also. End of annoucement. Start of sidebar What the issue is all about. by Mike Auberger. "My grandmother is 89 years old. She lives in her own apartment. Once a week she moves all her furniture from one side of the room to the other, and she's full of piss and vinegar. But she's got a friend who ended up in a nursing home, because she's not able to physically take care of herself. The fact is: old people don't go to nursing homes. It's people who end up with a disability who go to nursing homes. Age is not the reason people go to nursing homes; it's because of some kind of physical impairment. This is a real solid argument that I think we need to lay out. It's about young and old people with disabilities. That's what nursing homes are about. It's not about old people who just go there to pass away the time. Nobody does that. They go there because they have a physical impairment. This is a real important point to make to the media, to the press -- or just when you're talking to seniors' groups, or whoever you're talking to. It's amazing the different lights I've seen go on when we make this point. Initially everyone thinks "nursing homes are about the elderly." But they're not. They're about being disabled. The media doesn't understand this. People who are elderly have not even understood this yet. End of sidebar. Start of poem. PETUNIAS by Laura Hershey, October, 1991 I knew you planned -- you knew I supported -- this arrest. Yet when I watched you, unstoppable as ever, driving your chair around a cop, up a hill, through careful, distinctly unrevolutionary petunias, past a police barricade, and knew I'd probably seen the last for at least that day of you -- my selfish spirit whispered a small wish to call you back, forget the cause, abandon the movement, pick some petunias, and take you home. Another whisper reminded me how fragile our home might be. The world we share -- our meals, our bed, our work, our freedom to live together alone -- depends on this clash and on our mutual -- you of your liberty one or two days -- me of you in my bed -- sacrifice. I wanted right then to offer -- like a hand-picked bouquet -- my small insight to you, and hear your thoughts in turn. But by then I could see no sign of you except your tire marks through the petunias. End of poem. Title of article: What the Doctors didn't want to know by Carol J. Gill, Ph.D. Article starts here. Last year I submitted an article to a medical journal. The editors were planning an entire journal issue on the topic of rehabilitation and wanted to to include work by persons with disabilities, including those of us who are professionals. I wrote about family issues in coping with disability.. I usually seize the opportunity to talk to doctors about disability because I know it is mostly from us that they are likely to get a proper grounding in the neglected social aspects of our experience. A disabled friend urged me to write about what I have learned from psychotherapy clients who express the profound pain of living in families who reject their disabilities. People need to hear this, he said. I started my article by describing how pervasive our devaluation is in this culture. I told the doctors that they, too, were "handicapped" by their own prejudices regarding disability. "This is the part they will probably edit out," I thought. Then I went to the heart of my article. I talked about the insider/outsider position disabled people often straddle in their own families. I talked about the pain of conditional, partial approval, of being split into "acceptable" and "nonacceptable" parts by the people we love. Finally, I mentioned the healing of identity that can take place when disabled people find disability community. I ended with an anecdote about the mother of a disabled child who came to terms with her daughter's dual citizenship in the world of the family and the world of disabled people. I urged the doctors to fulfill their obligation to help families face the social realities of disability. I warned them that shirking their responsibilities would make them agents in the tradition of harm disabled people have endured for years in medical settings. Well what do you think happened? The physician editors accepted the article for publication! When I saw the draft they'd edited for publication, I discovered that to my pleasant surprise and their credit that they had bitten the bullet and left in all the lines about their own prejudices and about their obligation to enlighten families about the social side of disability. I also saw, to my horror, that, due to "space considerations," (as one of the editors would explain to me later) the central core of my article had simply disappeared. They kept the part about physicians, the little story about the mother, but the part describing the status of disabled people in their families had been removed. I talked with one of the editors about this. They would include my warning to physicians to inform families about the complexities of disability, but I couldn't budge them beyond this. They were still going to leave out the information which needed to be conveyed. The major content -- the experience of disabled people -- would go. After years of working as a psychologist in a rehab hospital, I knew doctors needed to learn about the social/political/cultural experience of the people behind those rehab medicine categories. I talked to one of the editors by phone, pointing out that the proposed cuts would render the article essentially meaningless, devoid of disability perspective. The editor I spoke to was polite, admitting that the outside expert they had asked to review my piece had enthusiastically recommended it be published in full. Nonetheless, she said, the decision of the senior editors to cut it -- for space -- was final and that it would be useless to push the matter further. If these editors had been rigid or thoughtless medical-model adherents the decision might have been less perplexing; but I was dealing with apparently decent people here, who saw the need for a journal issue entirely devoted to disability issues beyond basic medical treatment. Still, they could apparently not see the central issue of my article. That summer my article appeared in the journal. It occupied one full page and a third of another; the other two thirds of the page would have been empty save for an unrelated piece of physician artwork. Other articles in the journal, written by physicians, ran for five pages or more. There was also a two-page photo spread of wheelchair athletes in action. I've had my work edited for professional publication many times. Changes and deletions are part of the game. But I have never had whole pages cut from a piece without discussion. I pondered it all. Perhaps they thought the rejected paragraphs were poorly written. If so, then why hadn't they brought up a rewrite? If the cut had been politically motivated, it made no sense that they then left in everything I wrote critical of doctors and medical model practice. If they'd thought the concepts "culture" or "bi-cultural" too farfetched and unsupportable, they could have said so. They were straightforward in objecting to other terms -- they deleted the word "spurious" (as in, "a medical model spuriously enlarges the importance of physical issues in disability.") from my first draft because they considered it too "strong." Perhaps the editors discarded the central part of my article because they considered it unimportant. Perhaps they thought it dealt with matters that doctors don't need to know. I sent my "missing piece" to The Rag because I thought its content -- and the story of what hapened to it -- might be of interest. End of Gill's explanation. The article she wrote follows. Headline: Dual citizenship and conditional acceptance. By Carol J. Gill, Ph.D. Article starts here: A way of looking at disability and family issues that can guide physicians is the bicultural model of disability. The bicultural perspective is, perhaps, more familiar in the case of mainstream families who adopt a child from an ethnic or racial minority group. Professionals who work with such families tell us how essential it is for the adoptee to be accepted as an integral part of the family, and yet respected as an individual with a unique history, identity and experience. The newcomer belongs to two worlds. If the adopting family rejects the newcomer's dual "citizenship," the result is an uncomfortable, unhealthy adjustment. However, if the family not only tolerates but embraces the diversity, the experience can enrich all members of the family. Living with a disability, too, is a bicultural experience. When people become disabled, they acquire a different social identity. They become members of a minority group with many of the same experiences and problems as racial and ethnic minorities -- for example, discrimination in jobs, education and access to the community; segregation, economic oppression and social devaluation. In the case of disabled people, however, it can be a particularly lonely status. Unlike other minority groups, disabled people rarely share that status with family members, neighbors and important figures in the community. Often they have met no successful peers to validate their experiences or to offer well-tested advice on living day-to-day as a disabled person. While a disability sets an individual apart as different from family members in many ways, that individual retains much in common with the family. Disabled people carry dual citizenship in the world of disability (the minority group) and the world of nondisability (the surrounding majority culture). How the family acknowledges and accepts this -- or how they fail -- affects the adjustment of all concerned. One of the most destructive messages a family can convey, beyond outright rejection of disabled members, is partial or conditional acceptance. They may say, for example, "We love you in spite of the disability." The emotional substance of that message is, "We love only the nondisabled part of you; we will be proud of you insofar as you strive to be as normal as possible." Ultimately, the disabled person understands that, for the family, just as it is for society, the disabled part of herself is bad. This is the emotional wound disabled adults bring into psychotherapy. It is the dilemma we see played out whenever the media celebrate the accomplishments of another disabled superhero. People with disabilities feel pressured to "overcome" their disabled parts through superhuman behavior. Many spend their entire lives and precious energies proving their is something valuable or normal about them that the disability has not spoiled. Others despair. In medicine, too, disability is treated as something bad, to be cured or fought. Someimes this goal is pursued so aggressively and singlemindedly that the person possessing the disability is neglected. In rehabilitation units, for example, it is common to see the treatment team and the family painstakingly joining forces to improve a patient's range of motion or muscle strength while that individuals relationship with the world crumbles unabated. If the physician reinforces the family's view that disabiliy is a primarily medical problem that must be overcome, the family is less likely to integrate the disability into family life in a positive manner. Family members also remain unequipped to deal with the social and psychological struggles ahead. What is so often overlooked by families and professionals alike is that disability is an important ingredient in the identity of disabled people, just as having dark skin could be for a cross-racial adoptee. The "overcoming" philosophy of disability promotes rejection of the disabled part of the self, leaving a gaping hole in self-image. It prevents the integration of the self necessary for sound identity and self-esteem development. More than anyone else, disability activists are healing that wounded identity. The growth of the independent living and disability rights movements in the past decade have fostered a declaration of disability pride. The work of disabled professionals, artists and humorists is defining the common experience of disabled people. Activists are proclaiming the neglected fact that disability brings good experiences and qualities to people's lives. Gradually, people with disabilities are finding their history and cultural legacy. They are seeking support and validation in the community -- the family -- of other disabled people . End of article. Sidebar: Where's the family? The doctor editors made yet another interesting change in the article. They deleted Gill's deliberate use of the phrase "disabled family," referring to the alternative family disabled people often construct from their peers in the community, and replaced it with the bland "others with disabilities." A simple question of style and clarity? Or a signal of discomort with the idea that we might seek and find a sense of family -- a sense of shared experience, identity and belonging -- outside our nondisabled families of origin? End of sidebar. Department: Developing a language by John R. Woodward, M.S. W. (with Michael Elliott) Title of article: What a difference a word makes Michael Elliott contributed to this story. John R. Woodward, M.S.W., and Michael Elliott work at the Center for Independent Living of North Florida. Article starts here. I went to a town meeting recently. The topic was the deterioration of our Southside ghettos. I was hoping to get a chance to scold some local officials. I got lucky. A member of our school board joined my group to discuss the problems of our Southside schools. It turned out she was a big supporter of "neighborhood schools." When my turn came to join in the discussion, I asked her, "When are you going to stop busing Southside students up to the Tharpe Street area?" She looked puzzled. "Oh, we don't do that." "Yes, you do," I told her. "Dozens of Southside kids are bused up to Raa and Ruediger schools. I've met lots of them." "No, sir, you're mistaken," she persisted. I looked at her sadly. "You don't even know the students I'm talking about," I said. "Well, perhaps you could tell me," she snapped. "Any student who uses a wheelchair is bused up from Southside to either Raa or Ruediger," I said. "Ah, I see!" she said, relieved. "But that's not busing. They just go to Tharpe Street because that's where the physical therapists are." I hadn't known until then that physical therapists were rooted in stone, immovable. *** The trouble is, we call it "mainstreaming." We've had "mainstreaming for 17 years, and most disabled kids still aren't educated in their neighborhood schools alongside their nondisabled peers. Thousands of school systems all over the country are still working to implement "mainstreaming." If we'd called it "integration" back in 1975, at least people would have understood what we meant. That was the year that saw the passage of the Education for All Handicapped Children Act, the last major civil rights bill for disabled persons written and sent through Congress without major input from the disability community. It was drafted by progressive educators and supported in Congress by the parents of children with disabilities. The professionals and parents who brought us the Act meant well (everybody always "means well" when it comes to disabled people), but they thought in terms of "appropriate education" instead of "civil rights." I don't think disabled activists would have made the same mistake. Since parents and professionals designed the bill, we got a law that reflects the needs of parents and professionals. The Act requires that a child with a disability be educated in the "least restrictive environment" (or LRE, for short). Putting a child in the "least restrictive environment" is what "mainstreaming" is all about. Experience proves you can be "mainstreamed" without integration. Most school systems implement the Act by offering four or five different levels of restrictiveness, from "special schools" to "special classes" within neighborhood schools, to partial mainstreaming to full mainstreaming (with or without individual supports in the classroom). In such schools, the procedure for assigning a child to the appropriate LRE calls for the child to be put in the most restrictive environment appropriate to her needs first, where she must then prove that she is capable of handling something better. Actually, the philosophy behind the LRE calls for the school authorities to plan for a child to enter a normal classroom first, with whatever individual supports are necessary to help her learn there. The child shouldn't have to prove anything; the school authorities should have to prove that they're doing everything they can to help her learn in a normal classroom. Instead of being merely a level on a scale of placements, the "least restrictive environment" is supposed to be a point on a continuum of services. When I was young and foolish, I minored in "early childhood education." The Education for All Handicapped Children Act was four years old at the time. I attended many classes and seminars in which the "revolutionary" impact of the Act was eagerly discussed. Folks in the Special Ed biz didn't seem to feel that "mainstreaming" would put them out of a job. Instead, they believed that the "impact" of disabled students in the regular classroom would raise their status. Instead of running underfunded, segregated schools where their students were warehoused and forgotten, they'd become consultants working with the teachers in neighborhood schools to design LREs and provide "special services" in the classroom. They anticipated bigger budgets, bigger salaries and more prestige. "Mainstreaming wouldn't abolish the Special Ed industry; it would expand it beyond their wildest dreams. And so we have "mainstreaming" instead of integration. "Mainstreaming" is a privilege, not a right. "Mainstreaming" is something granted to you by a cadre of professionals. The process of writing an Individual Education Plan -- and IEP, which determines how you will be "mainstreamed" -- is firmly under the control of Special Ed professionals. "Mainstreaming" serves their interests: the preservation of jobs, budgets and professional status. Racial integration isn't like "mainstreaming." Under integration, you are entitled by law and by the Constitution to be educated in a school that reflects the racial balance of your community. Nobody gets to decide if you "qualify" for integration. You may have to take the government to court to enforce integration, but the right to integration is yours by law, unquestioned. When you stop to think about it, "mainstreaming has rather an odd ring to it. People aren't "mainstreamed into the workplace;" they get jobs. The public at large, including many parents of disabled children, accepts without question that Special Ed professionals should be the ones to decide whether disabled children should be educated in their neighborhood schools alongside their nondisabled peers. It's the Medical Model all over again: people with disabilities need Experts to tell them how to live. The Medical Model has hijacked our right to integration in the schools. So next time you get into an argument about the use of the word "disabled" instead of "handicapped," or the terms "wheelchair bound" vs. "wheelchair user" and the person you're arguing with tells you it's "just a matter of semantics," tell them about "mainstreaming" and "integration." Let them know what a difference a word makes. Tell them that "mainstreaming" has set us back a decade or more. And ask them how far they think they'd get swimming against the "mainstream." End of article. Fiction. Title of story: Mildly retarded by Robert Perretz-Rosales Story starts here: I couldn't help but notice him, although at first I had no idea why. He didn't stand out in any particular way from the group of six or seven people standing in a circle. I mean, he wasn't especially tall or heavy. He didn't speak loudly or wear outlandish clothes. But even though I was too far away to make out what they were saying, I sensed intuitively, in the mind below my mind, that he was different. Once alerted, I began to explain it to myself. Timing, that was part of it. He reacted much like the others, but a little after them. There would be hearty laughter from the group, but his expression would remain serious for a split second longer than the others'. I soon realized that, just as I was studying him, he was cautiously studying the others, looking for clues in their mannerisms which he apparently was missing in the content of the conversation itself. He never initiated a subject, but only responded when addressed, this accompanied by a slight shifting of weight from one foot to the other and back. Each response would be minimal, with someone else soon dominating the attention of the group. From time to time he would drift away, his eyes not connecting with the others, only to be startled slightly upon realizing where he was. As I mentioned, he did not dress bizarrely, but further observation showed a lack of attention to style, in contrast with those about him. He was a little less tidy, his hair shorter and sideburns longer than the other men in the group. While everyone else was casually but smartly attired in sweaters and slacks of complementary tones, he wore a white shirt and bluish tie under a rumpled brown suit. I edged close, the urge to know what they were talking about, what he actually said, irresistible. It was now clear that one person, the woman to his immediate right, knew him better than the others did, and that she had assumed something of the role of his protector. She would step in when he began to get tangled in his words and finish sentences for him or make a little joke to divert attention when he got stuck. While well-intentioned, her efforts were clumsy, causing the man to hesitate at times and glance her way, not sure when she would next cut in. The longer this went on and the more I took in, I began wincing in discomfort at the poor man's plight. Then he made some remark or other which resulted in the whole group, including his mentor, burst out in laughter. Watching him standing there bewildered, I could no longer remain a passive witness. "Sir," I said to the man, taking him by his right elbow and turning him slightly toward me, "could I be of any assistance?" "If you speak French, you certainly can," he answered, his eyes brightening. "I managed to deliver my address to their organization earlier, bumbling along with a French translation, but now I can hardly follow a damn thing they're saying." "And the topic of the address, what was it?" I asked. "It had to do with a neurosurgical technique I developed recently," he answered. End of story. Headline: Upcoming HBO movie "irresponsibly stirs fear" of disabled people Article starts here. Barbara Faye Waxman and Tari Susan Hartman are working closely with the California Abortion Rights Action League to protest the negative effects an upcoming Home Box Office movie, "Miss Sherri," could have on the disability and pro-choice movements. "The disability and pro-choice movements have common political goals -- self determination and informed choice based on accurate information -- but there is a deep ongoing conflict between the two movements: the reproductive rights movement has historically exploited the disabled fetus as an appropriate reason to keep abortion safe, legal and funded. While abortion should indeed be safe, legal and funded, say disability activists, it should not be extolled as a device to rid society of 'defective' members. This conflict has enabled the anti-choice minority to make inroads into the disability community with their stand against eugenics and all abortion, though their political ideology is counter to disability movement goals," say Waxman and Hartman. The film industry is about to inflame this conflict with its production of "Miss Sherri," the story of an actual case -- a woman's effort in 1962 to abort a disabled fetus which would have been born without arms and legs as a result of her use of the drug Thalidomide during pregnancy. Director Joan Micklin Silver contended in a January 3 Los Angeles Times interview that the film was "a story about men making decisions for women." It's much worse, though, say Waxman and Hartman: it's about how media represents disability and how nondisabled people judge disability. The movie, they say, demonstrates how little things have changed in 30 years. "There is still a vociferous anti-choice minority that would forbid a woman to have an abortion for any reason, and there is still a terror of people with disabilities. This same atmosphere led to the pollution of the airwaves last July with KFI Radio's prolonged public tirade about the morality of Bree Walker Lampley's decision to give birth to a child who could inherit her disability. "We believe that 'Miss Sherri' is as irresponsible as KFI in perpetuating fears, prejudice and misinformation about disability and disabled people." After the California abortion rights group obtained the "Miss Sherri" script, Waxman and Hartman met with the film's prominent producer, Sidney Pollack, an CARAL supporter. "We knew he had intended Miss Sherri to be a pro-choice film, especially during this critical time of backlash toward Roe v. Wade," they said. After a meeting with CARAL representatives, Waxman and Hartman say that "he and his colleagues realized their prejudice toward disabled people was systemic in the film" and offered to change select scenes and reshoot one scene. The group felt, however, that "editing out superficial bigoted references would have been meaningless" because they believed that "you can't change something that is so fundamentally contemptuous of disabled people." The producer, say Waxman and Hartman, asked them to see the film before passing judgement. But in a subsequent meeting, HBO executives refused to let the group view the film until three weeks before its air date, said Hartman and Waxman, after it had already been "locked into final form." "Their disrespect of our concerns underscores their bigotry," they said. The group says they see this as an opportunity to raise the issue of eugenics with the general public and the media, and for the disability rights and pro-choice communities to finally establish a formal dialogue and working relationship. Hartman says they're planning to launch a media campaign about this "as we did with the Bree Walker Lampley debacle" and urges readers to join in the fight against "this latest media assault." They urge readers to watch their local television listings for the air date and time of "Miss Sherri" in June on HBO, and after seeing it, write letters "expressing your shock and disdain at the film's blatant prejudice" to Bob Cooper, Senior Vice President, Home Box Office, 2049 Century Park East, 41st floor, Los Angeles, CA 90067. To increase the effectiveness of your letter, they urge you to send copies to: Sidney Pollack, Mirage Enterprises, 100 Universal City Plaza, Bungalow 414, Universal City, CA 91608 and Barbara Faye Waxman, 8883 Pico Blvd. #227, Los Angeles, CA 90035. The group also urges readers to contact local media to express concern and anger over the creation of "Miss Sherri." End of article. Poem: QUADRIPLEGIA by Alan F. Troop note: this poem is centered on the page It amazes me, the sensation of paralysis. The unfelt touch as tangible as the vivid darkness is to the blind, and as silence resonates for the deaf, a symphony of nothing. End of poem. Department: Reading Headline: A groundbreaking work. A review by Anne Finger HERE, poetry performance video by Cheryl Marie Wade. VHS, TRT: 13 min., 30 sec., includes printed text of the nine poems performed. Available from CM Wade, 1613 Fifth St., Berkeley, CA 94710-1714; $25 individual, $15 low-income, $35 institution. Cheryl Marie Wade is a Berkeley-based performance poet whose video, "HERE", is a groundbreaking work for our community. Performance poetry emphasizes the spoken aspect of the poem, the physical presence of the poet. While Wade's work is certainly strong enough to stand alone on the page, her work is even more powerful and riveting as it is presented in this video. The opening piece, "Hospitallitany," traces medical language from "kindly" condescension ("She's small for her age, moonfaced/almost no breast development . . . Has she started menses?/Has she?'Have you started your period yet,dear?") to its brutal underpinnings: "Cut off the nodule/realign the hip joint/scrape cut saw . . . " Powerful on the page, the work is breathtaking when Wade performs it, her voice rich in both irony and rage, gathering momentum as it moves through the poem. Wade is both sensual and honest. She writes the disabled female body: her hands are pleasing "marshmallows"; in the poem "Here," she announces "There is a woman here/with a stiff back/ . . . who sits in a chair on wheels/ and hauls sacks of self-doubt/as if she were a stevedore . . . " In another poem: "I'm a French kiss with cleft tongue." In the final poem of the videotape, "IAMNOTONEOFTHE," she rejects euphemisms "physically challenged," "differently abled" and "able disabled." Plunging to the core of both fear and power, she says: "I'm the first cell divided/I'm mud that talks/I'm Eve I'm Kali/I'm the Mountain That Never Moves/I've been forever I'll be here forever . . . . " Wade says that for the "disabled feminist writer-performer" it's either "self promotion or no promotion," yet clearly she's not just out to build her career; her commitment is to building the culture of our community. Contrary to most videos you see, there are no warnings from the FBI and the powers of corporate capitalism preceding this, threatening dire consequences for unauthorized uses. Wade writes, "I encourage anyone who buys "HERE" to use it, use it, use it." I too encourage individuals, women's groups and disability groups to buy this powerful work of art and use it, use it, use it. End of first review. Headline: Talk Therapy. A review by Robert Emerson O'Neal Toxic Psychiatry. By Peter Breggin, M.D. New York: St. Martin's Press, 464 pages. $24.95 hardcover. Wanted: a cure for mental problems. You could try Mellaril, Navane, Lithium and Xanax; I did. I hoped that they'd magically evaporate my troubles. I tried those drugs because I believed the claims of the "toxic psychiatry" industry. Others can be better informed, though; they can read Dr. Peter Breggin's recent book, Toxic Psychiatry. Despite its psychiatric jargon, the book captures more than information; in Peter Breggin you can hear the voice of a poet and feel the touch of a novelist. I enjoyed reading this book. Dr. Breggin, who received his training at what's now the SUNY Health Science Center in Syracuse, New York, asserts that "major psychiatric treatments work by producing brain dysfunction." This assertion is best understood after surveying the contents: In Chapters 2 through 11, Breggin explains the overwhelming mental conditions labeled "schizophrenic," "depressive-manic depressive" and "anxiety." Next, Breggin addresses special problems encountered by women, children, and homeless people at the hands of the mental health system and the psycho-pharmaceutical complex. Finally, he discusses alternatives, including self help and mutual aid. Using a social model of madness, Breggin finds our problems similar to learned helplessness. People who feel helpless seek relief in another reality, he points out. "In schizophrenic madness," he writes, the person may believe that someone is "plotting against him." Though described typically as "too sensitive," Breggin asserts this may be "a normal sensitivity to anxiety, tensions." "Talking with the designated patient is often more interesting . . . than talking with the rest of the family," says Breggin. The patient is "striving to live a better, more fulfilling or meaningful life." "Yes, there are people who think they are God or the devil," Breggin concedes; "but no, these people are not biologically defective or inherently different from the rest of us," he points out. For proof that those of us with mental difficulties are not biologically defective nor inherently different, carefully study Breggin's arguments in this book. Breggin would replace the drugs currently used in psychiatry with love-based "talk" therapy. Since this type of healing is slow and costly it is not available to most poor people. A less-expensive alternative is the mental-patient movement. Some have dismissed Breggin's arguments because "talk therapy" (even with love) doesn't work for everyone. However, if the reader is openminded, he will find Breggin challenging him to think a new way. Breggin's results may make us think differently. He states, "In my career I have never had a patient commit suicide" in "more than 20 years of fulltime private practice." Partly, he admits, it's luck -- "because ultimately our clients are responsible for their own lives." But it's also, he believes, partly "because I don't threaten to lock up my clients." "The therapist who refuses to use involuntary treatment is forced to think and work harder, to be more creative, to care more, to try harder to understand, and to pay greater attention to the client's needs." End of reading department. Ragtime department. Headline: By any other name Start of article. There's a theme running through a number of the articles in this issue of The Rag. Barbara Faye Waxman, in her cover story, writes about hate crimes against disabled people. "While crimes motivated by hatred toward groups specified in the federal law are treated by Congress as social injustices, when based on disability they are seen in a wholly different light, " she says. "We are not perceived as constituting a viable, separate group in society." Carol Gill writes us with the story of a medical journal whose editors, though they liked her writing well enough, missed the central point of an article she wrote for them, and deleted it. For Gill, the excised section formed the soul of her clinical work with disabled people, and explained a way to heal the destruction caused by what she calls the "conditional acceptance" message families often give disabled members: "we love only the nondisabled part of you; we will be proud of you insofar as you strive to be as normal as possible." "More than anyone else, disability activists are healing that wounded identity" as disabled people find "support and validation in the community -- the family -- of other disabled people." The doctor/editors, though, just didn't get it. John Woodward writes that integration has never really occurred for disabled schoolchildren, decades after the Education for All Handicapped Children Act, because it was never called "integration." It was called "mainstreaming." To most people, he says, busing doesn't have the same connotation when referring to disabled students as when referring to black students. Things missing, things called something else, similarities ignored: in all these cases, what emerges is that disability is discounted, deleted. Nobody sees the connection. I've started keeping a file of things that prove how few people ever link the oppression disabled people face to the oppression women, blacks, Hispanics, gays and other "trendy" minorities face. I hesitate before writing that word: "trendy." Of course, it's true that other minorities remain oppressed in our society. But at least sometime, somewhere, their oppression is calculated. Disabled people rarely even enter the equation. A recent addition to my file was a March 15 review of "A People's Charter: The Pursuit of Rights in America" by James MacGregor Burns and Stewart Burns. I read the review in the New York Times Book Review by Randall Kennedy, a professor of law at Harvard University, hoping I'd find what I suspected I wouldn't -- and I didn't, of course: In the review, at least, there was no mention of disability rights in the pursuit of rights, though other requisite groups were mentioned. I face now a familiar task: do I want to get the book, just to have my suspicions confirmed? Who missed disability? The Burnses, or Kennedy, or both? Despite the ADA, disability rights has still not entered the rights agenda of our nation. This constant looking for disability in the consciousness of our nation's rights agenda is tiring and unrewarding. Sara Watson, with the Washington Business Group on Health, is aware of (and just as tired of) this neglect, which she said is rampant in our nation's graduate schools of public policy and public administration. She recently got a grant from the National Institute on Disability and Rehabilitation Research to try to introduce disability as a "mainstream curriculum topic" in those programs. She's adamant about avoiding the insertion of disability into a "special" section; she wants it in the heart of public policy discussion. She's been gathering material; unfortunately, because so little attention is paid to the centralness of disability issues to this nation, relatively little material exists. It's the ol' chicken-and-egg thing. There's a flip side to this problem of the disability dimension not being recognized: Robert Perretz-Rosales's story shows us that. We are running Gill's suppressed article. We suspect it was too new an idea for the journal's editors to fully grasp. Maybe some doctors somewhere will see The Rag and learn something really new. End of Ragtime department. Advertisement, one third page: The Disability Rag is available in regular print, large print (14 pt. type) and on cassette tape. The Rag can also be made available on diskette in ASCII format to subscribers who use IBM or Macintosh computers. Specify when placing your subscription if you wish a computer disk format. For more information, call 502/459-5343. End of ad. Full page ad: Back issues. Available in standard, large print and cassette (C0788-C1191 only) $3 each C1183 Changing Attitudes: An Examination C0284 The Right to Life and the Right to Die C0684 Part of the Human Condition: The Census and Us C0784 Out of the Back Room and Into the Streets: An Interview with an Organizer C0185 Here's Lookin' at You: TV images of disability CO883 After, After... and Before: Becoming disabled CO685 Technology and the Disability Dream C0985 Independent Living: special issue on IL center issues C0386 Cochlear Implants: The Final Put-down? C0586 Insult to Injury: personal injury suits C0786 The Athletes: Do sports and disability rights mix? C0986 Higher Education: Campuses and Access C1186 A Killing Faith Religion and disability C0587 Backlash: Do we complain too much? C0987 And the Greatest Of These Is Charity: Jerry Lewis and Telethons C0187 Emotion and Pride The search for a disability culture C0788 A New Day for Disability Rights: Start of the ADA C0988 Should animals suffer so that we might be cured? Animal rights C1188 The At-Home Vote the disability vote C0189 Personal Care Issues surrounding attendant services C0389 The Revolt of the Easter Seal Kids more on telethons C0190 Crip Girls Go To the Movies C0390 The Week ADAPT took Washington photo essay C0590 No Entry The Homebuilders fight access C0990 Unanswered Questions surrounding another suicide C0790 Let Tem read tapes The home video caption battle C1190 We wish we wouldn't see . . . special issue C0191 Why The Nation Doesn't Have Attendant Services C0591 Survivor: What we should call ourselves C0791 Pride: Do we have it as a movement? C1191 Bigotry in the air: anti-disability fervor on talk shows Please use code numbers when ordering. Orders must be prepaid. Make checks payable to: The Disability Rag Allow 6-8 weeks for your order. When ordering, be sure to include your name, address, city, state and ZIPcode. Send your order to: Back Issues,The Disability Rag, Box 145, Louisville, KY 40201. End of ad. Full page ad. Type is large; there is a picture of the book cover. Text: Just published! A one-of-a-kind new book. "People with Disabilities Explain It All For You. Your Guide to the Public Accommodations Requirements of the Americans with Disabilities Act. Edited by Mary Johnson and the Editors of The Disability Rag. A no-nonsense, down-to-earth guide designed specifically for small businesses. Buy several and given them (or sell them!) to your favorite inaccessible restaurant, record store, book store . . . Simple and easy to follow. Order your copy today! Only $15.95. Orders must be prepaid. Send check to The Advocado Press, 1962 Roanoke, Louisville, KY 40205.(502/459-5343). Allow 6 to 8 weeks for order to be filled. End of ad. Start of Ragland Department. Headline: Attendant services no. 1 media issue. Article starts here: Responses to our survey in the January/February issue showed, not surprisingly, that the issue of attendant services should be one of the top three issues on which "the disability rights perspective must be heard in the media." "Attendant services" came in on almost all the returns -- if not as the top issue, then the second or third in importance. Those who didn't rank it no. 1 often ranked "access" or "implementing the ADA" higher in the hierarchy of issues they wanted media to pay attention to this year. On the whole, responses were remarkably consistent. Perhaps for the first time a consensus is emerging in our movement over key issues. Perhaps the organizing that led to passage of the ADA is partly responsible; perhaps the success ADAPT has had in focusing activists on direct action as a means of change has had its effect, too. ADAPT has become increasingly effective in organizing a national movement around the issue of getting adequate attendant services in this nation, focusing on money now given to nursing homes via the federal government's Medicaid pipeline: ADAPT is demanding that a fourth of that money go toward a national attendant services program. Most of us seem to think that makes sense. ADAPT's choice to hold a national action in Chicago in May stemmed in part from the fact that, in the Midwest, media might be less distracted and more interested in covering the issues. That was a conscious decision on ADAPT's part. In recent years ADAPT has been making an increased -- and increasingly effective -- effort to pay attention to how their protests play in the press and to explain the issues clearly to media covering their actions and arrests. The action this May will focus, say organizers, on getting the media to understand that old people go into nursing homes not because they're old but because they have disabilities -- that disability, not age, is why people are put into nursing homes, and that attendant services is a better option for everyone. "Nobody wants to live in a nursing home" has been a very effective slogan for the campaign so far, and it will be heard and seen in Chicago over and over. ADAPT organizers are seizing on the media opportunity afforded by Mother's Day (it was no coincidence that they'd be doing an action on Mother's Day) to make an even bigger media point: that the majority of residents in the nation's nursing homes are people's mothers -- mothers put there by their kids, mothers who want -- and deserve -- a better life in their own homes, helped by attendant services. So survey respondents may get their wish: the attendant services issue may yet be covered by the nation's media this year. If ADAPT's plans work out, it certainly will. Subhead: Broaden your horizons; write for a larger audience Start of article: For the second time today, we have opened an envelope with an article submitted to The Disability Rag. We receive many submissions in our office -- far more than we can reasonably accommodate in a small publication that appears only every other month. Many of these articles are worthy of being printed -- indeed, their writers are setting their sights too low by sending them to The Rag. And we've written a number of you letters explaining this. Now we're telling all of you what we frequently tell those who send us submissions: Your article belongs on the opinion pages of your community's newspaper. Your message is a sound one. It's important for the community at large to hear these points. Think beyond The Disability Rag when you submit your article. Don't submit it to us; submit it to your local newspaper's opinion page. Of course your article may be rejected. But that's true whether you submit it to The Chicago Tribune or The Disability Rag; The Rag may have to reject it, too. You stand a better chance of getting your piece published on the opinion page of your local paper, in fact, than you do in The Rag -- for one thing, they have more space to fill, and they have to fill it every day! If your paper's opinion page editors aren't used to getting articles on disability, it's time you started exposing them to these concepts. Sure, they might reject the first ones, but if more and more people present cogent arguments in their articles, sooner or later a change will occur in the editors' perceptions -- and disability analysis of issues will start making it onto the nation's opinion pages. Very few of the articles submitted to The Rag are written so specifically for our own disability community that they would seem out of place in the general press. Much of what we say in The Rag, moreover, needs to be heard by the general community; it's in part because people don't often submit these kinds of articles -- like the article about mainstreaming on page xxxxx -- to their opinion pages that we never see such opinions anywhere but The Rag. So: the next time you have an idea for an opinion piece and think it belongs in The Rag, think again: it may belong in your own city's newspaper. Try it. If you're published there, you'll have the satisfaction of knowing you're not just preaching to the choir anymore -- you're exposing your community's thinkers and leaders to the kinds of disability rights ideas they need to have. Happy writing. End of Ragland department. What! Department starts here. Headline Why we need more attendant services Text: "We are assisting him to the best of our ability within the confines of our resources." Larry Brown, a spokesman for the District of Columbia's Department of Human Services, explaining to the newspaper why William B. Cole continued to call the DC fire department for assistance in moving from his wheelchair to his bed. Cole called the fire department's nonemergency number 48 times from last April to October -- whenever he needed to move and his city-provided homemaker was not available, according to a report in the Washington Post. Only the firefighters, who are forbidden to refuse calls for help, could be counted on to respond to every call, said the report. Cole's "homemaker" worked only from 1 pm to 7 pm. The human services department said there was little they could do to get Cole to quit calling the fire department "without moving him to a nursing home," and, said the report, "Cole refuses." Headline: Mad Text: "Works on dogs, animals, drunks, psychotics and drug abusers!" Advertisement for Assault Deterrent, a Mace-like aerosol chemical weapon from the ADCD Company of Baltimore, Maryland. Headline: Breastless is best Text: "Well, would you rather be a flapjack or a cripple?" Betty Rollin, author of "First you Cry" and "Last Wish," in an op-ed article in the February 23 New York Times on whether it's better for a woman to use saline breast implants which may leak (making you a "flapjack") or silicone implants which may cause who-knows-what (evidently making you, in Rollin's mind, a "cripple.") Headline: From the ADA President, the same old rhetoric Text: "President Bush's advertisements pledge that he will 'change welfare and make the able-bodied work.' " New York Times reporter Kevin Sacks, writing on "The New, Volatile Politics of Welfare" in the New York Times. End of What! Department. Letters Department. Headline: Language breaks? Not on your life! Text: I don't think we should ease up on language at all ("Give 'em a break," March/April). In my opinion, there are no disability issues bigger than terminology, because in a verbal society such as ours, terminology defines everything. As the saying goes, "what you say is what you get." I am a professional writer who specializes in writing disability- oriented articles for magazines. My work has been featured in hundreds of national publications from Reader's Digest to The Disability Rag, and I consider the language of disability to be of utmost importance. I learned the rules of proper disability language from a real expert when I wrote my first disability article 10 years ago; my assignment was an interview with Ed Roberts, who was then head of the Department of Rehabilitation for the state of California. Ed taught me about appropriate language, and I memorized every word he said. Since that day, I have made it clear to all my editors that they must follow my language rules -- or else. If they dare slip the word "handicapped" into my story as a noun or adjective or object of a preposition, I explain to them why I find their editing unacceptable. I take this risk with editors because I truly think language is important. "People with disabilities" really does have a different connotation than "the disabled." And "disabled" really does have a very different meaning than "handicapped." Why? Because we have decided that it is so. For this reason, I asked my professional organization, the New York-based American Society of Journalists and Authors, to change "writers dealing with handicaps" to "writers dealing with disabilities." And they agreed, because they respected me as an expert on the language of disability. We are all involved in a political movement in which language is unbelievably important. To allow writers to reinsert the term "the handicapped" into our literature would be like a woman of color saying, "Why sure, I don't mind that you just called me a colored girl." Get the point. Rag, give us a break! Keep supporting all of the language rules the leaders of the disability movement have agreed upon. GEETA DARDICK North San Juan, Calif. Headline: Challenged and less fortunate Text: I appreciated you once again challenging the phrase "physically challenged" ("The Problem with Challenge (again)," January/February) to describe folks with disabilities. The Vermont Center for Independent Living recently received a letter from the state Department of Labor and Industry which used the phrase, "accessibility requirements for the physically less fortunate." Is "physically less fortunateS as bad -- or worse? PHYLLIS RACHEL LARRABEE Montpelier, Vt. Headline: Including each other Text: It's funny how things happen. I was just about to drop my subscription to The Rag because, as a parent of a 12-year-old girl who has cerebral palsy and mental retardation, it seemed to me that The Rag and its typical readers did not embrace people with mental retardation as an integral part of the disability community. I got more information and firing up from my TASH newsletters (from The Association for Persons with Severe Handicaps). But I renewed The Rag one last time in December, and, by golly, the March/April Rag has a right-on article by Carol Marfisi on "The Hierarchy of Acceptance." As she says, "it is not an empty truism that oppressing any one of us oppresses all of us." People with all kinds of disabilities, as well as people without disabilities, are part of the disability movement. We need to respect each other, include each other and work for the good of all! KANDY PENNER Gainesville, Fla. Headline: There is money for ADA enforcement Text: Your article, "Getting in on the ADA Action" (January/February) indicates that this Administration "has appropriated nothing for enforcement." The Americans with Disabilities Act requirements [on employment] become effective on July 26, 1992 for employers with 25 or more employees and on July 26, 1994 for employers with 15- 24 employees. Fiscal Year 1993 thus marks the first full year of implementation of the Americans with Disabilities Act. On January 29, 1992, President Bush submitted to the Congress his Fiscal Year 1993 Budget Request for federal agencies. The U. S. Equal Employment Opportunity Commission, whose mission is strictly dedicated to enforcement of civil rights laws, is earmarked to receive an additional $32.5 million dollars and 250 staff above its current resource level. The requested dollar increase is the largest one-year increase in the history of EEOC! The magnitude of this requested increase for EEOC is a reflection of the Administration's strong commitment toward ensuring that a rigorous law enforcement program is undertaken regarding ADA and other civil rights statutes which the Commission enforces. EVAN J. KEMP, Jr., Chairman U.S. Equal Employment Opportunity Commission Headline: It's time for fiction Text: I applaud the decision of The Disability Rag to begin publishing works of fiction. It is my hope that you proceed in this endeavor with the same groundbreaking attitude that you employ with civil rights reporting. The disabled artist needs a voice, and any addition to the few outlets for our viewpoint is very welcome indeed. As a disabled writer struggling to get published, I have found that mainstream publications want supergimp stories -- and, unfortunately, all too often disability publications are too interested in projection of a positive image. While I can understand this desire for positive portrayals of us and our various causes, it is but a small portion of what we are and what we do; it is not the whole truth. What is needed is a body of work that displays the problems and the viewpoints of disabled people from their perspective in an honest, truthful and personal manner. Artists have always challenged the limits of society's perceptions. This is what our struggle is all about! But as yet there is no visible role for the artist in our crusade. There are bodies of women's literature, black literature and gay literature; why isn't there disability literature? I suspect it's no coincidence that these groups also have organized, effective movements which have progressed further than we have. We must make the disability experience accessible to all; we must show not just our differences, but how those differences influence how we relate to the world, and how the world relates to us. I call upon other disabled writes to join me in this quest. Art by its nature leads. It's time for all of us to become artists. ALAN LARSON Anacortes, Wash. Headline: I don't feel disabled Text: Significant changes are occurring in attitudes in society. I'm afraid changes in our own attitudes aren't keeping pace. What's been disturbing me lately is hearing someone with a disability being interviewed on TV or radio, or reading an interview in the paper, and hearing them invariably say, "I don't feel disabled." This comment isn't prompted by the reporter; it comes out of the person with the disability without any urging. How can we hope for those with no disabilities to accept us for who we are when we do not even admit who we are to ourselves? Shame on those of us who feel this way and publicize it! It may be that most of us would not choose to have disabilities; but we acknowledge them, accommodate for them and proceed to work, play, socialize, have families, make mistakes, pay taxes, take vacations and eat junk food just like everyone else. I can no more say "I don't feel disabled" any more than I can say "I don't feel female" or "I don't feel Jewish." It's a simple fact: I have a disability. It partially describes me; it does not define me. I advise those individuals who "don't feel disabled" to take a good look at themselves. Maybe the fault is in their terminology. They are not "disabled" -- they are "persons with disabilities." Now that the law requires that people with disabilities be treated as equals, we must be united in living that philosophy, espousing that philosophy and believing that philosophy. It is an exciting time to be a person with a disability. . No longer is providing access merely the right thing to do. It's the law. It's interesting, though, how companies are responding in their advertising. I particularly love the Sprint commercial: "Why would Sprint offer telephone cards in Braille? Because that's the kind of company they are." Baloney. They're doing it because it's the law! SUZANNE B. BACAL Philadelphia For more on the "I don't feel disabled" syndrome, see Carol Gill's article on page 12. -- ed. Headline: Inherent contradictions in organized blind Text: Bonnie O'Day's recent Rag article, "Why I am not a Federationist" and letters to it sparked dialogue and controversy in the blindness community. As usual, when criticisms are leveled at either of the consumer-directed organizations of blind people, their proponents raise their voices and cry "foul play" and "Liar, liar, pants on fire." The truth of the matter is that both the National Federation of the Blind and the American Council of the Blind have been of great benefit to their respective members and to people who are blind in general. The problem lies in the inherent contradictions between the philosophies and courses of action followed by each group. The National Federation of the Blind claims to be a democratic organization. Indeed, the national organization, its state affiliates and local chapters all have constitutions and bylaws. Nominees run for office, elections are held and members vote. But: how does one get to be a nominee? How many nominees are there for each office? The answers belie the process. In almost every NFB election, there is only one candidate for each office. What happens to the dissenters? Those who have the audacity to challenge candidates chosen by the leadership somehow have their campaigns fizzle out before the actual election. The overwhelming majority of elected officials in the Federation serve one unopposed term after another until they retire -- or until death. This state of affairs is nowhere more blatantly obvious than in the office of president of the Federation. Jacobus TenBroeck, founder of the Federation, served as president from its founding in 1940 until his retirement in the mid 1960s. He ran and was elected without opposition at the conclusion of every one of his terms of office. Upon retirement, Kenneth Jernigan, his hand-picked successor, was elected, without opposition, and served until the late 1980s when he retired and designated Mark Maurer to be his hand-picked successor. Mr. Maurer's elections have been unopposed. But Dr. Jernigan was not ready to relinquish power. Shortly after he retired as president and after Mr. Maurer was elected, the NFB board of directors created the position of executive director of the NFB. Was there a national search for the best-qualified candidate for this position? Were interviews held? Not on your life; Kenneth Jernigan was designated executive director. A superficial effort was made to make it appear that Maurer is in control, but all of us know better. No activities are conducted at the national level without the support and sanction of Dr. Jernigan, Executive Director. The American Council of the Blind has placed a limit on the number of consecutive terms of office held by the same person. But -- what is about to happen in the great state of California? The incumbent president of the California Council of the Blind has been in office for more than 10 years. He is not eligible for re-election. He doesn't want to relinquish power, though -- so, in a dazzling display of political sleight-of-hand, he has endorsed an untried and apparently weak candidate for president, and has announced he himself is running for vice-president. Ironically, this political trickster teaches courses in government to high school students in Los Angeles. Both the NFB and the ACB support the employment of blind people in competitive job settings. Both groups claim to believe that with appropriate training and support, blind workers can compete with their sighted counterparts. And yet both organizations advocate strongly for the perpetuation of the sheltered employment of blind workers through the Randolph Sheppard Program, which gives preferential treatment to blind people as operators of vending facilities in federal and state buildings. The Federation took no action in support of the Americans with Disabilities Act. In fact, at one point the Federation threatened to oppose passage of the Act if it did not meet every one of the group's requirements. Now that the Act is law, the Federation is claiming it supported the ADA all along; it has even received funding to provide ADA training. The Federation has been highly critical of this nation's Social Security system; yet, when asked to join with the National Council on Independent Living to change Social Security laws, the Federation refused. The strongest virtue of the independent living movement is that, for the most part, it is a democratic movement which remains true to its principles. The organized blind movement, which is much older and much more established, would do well to follow the example of its brothers and sisters in the disability rights movement and practice what it preaches. STANLEY GREENBERG, PH.D. Executive Director Westside CIL Los Angeles Greenberg has been a member of both the NFB and the ACB. End of letters section. Classified ads PUBLICATIONS KALEIDOSCOPE magazine offers literature with disability focus. Creative, not scientific, tone. Features poetry, fiction; informative essays, articles, Discover for yourself! Sample copy $3.00. Mention this ad and receive 50% off your subscription. KALEIDOSCOPE, 326 Locust St., Akron, OH 44302. CASSETTES THE PROSTITUTES OF NAIROBI (Tape 1) and YOU GET PROUD BY PRACTICING (Tape 2). Poems by Laura Hershey on audiocasstte. $10 each, both for $19. Plus $1.50 postage/handling. Laura Hershey, Box 9004, Denver, CO 80209. EMPLOYMENT Jasper Corporation, Jasper, Indiana. An Affirmative Action Employer. Division of Kimball International. PRODUCTS HANDICAP PARKING ONLY Effective reminder. Poem/cartoon each ticket. 12 for $6; 25 for $10, 50 for $15. Send check, cash or money order to: MSK Concepts, 10300 Petrieville, Eaton Rapids, MI 48827 Wheelchair cup holders. For info: I.S.C., 16 Liberty St., Larkspur, CA 94939 PERSONALS MATES! DATES! FRIENDS! International personals/networking newsletter by & for disabled/non-disabled. We've had marriages! For free information, send SASE to PeopleNet, P.O. Box 897, Levittown, NY 11756 SUPPORT SOUGHT AWARD-WINNING FILMMAKER seeks funds for documentary on Kentucky ADAPT founder/activist Arthur Campbell. Aimed at national audience. Contact Walter Brock, 118 Owsley, Lexington, KY 40502 (606) 266-1969 SCULPTOR WITH DISABILITIES seeks exhibition, residency, funding opportunities. Ricardo Gil, P.O. Box 21068, Oakland, CA 94620-1068 COMING EVENTS SUPPORT-IN TO CELEBRATE the Human Spirit and Break the Silence about Psychiatric Oppression. May 1-5, Washington, D.C. Includes Festival of Alternatives, Mad Celebration, Artshow, Workshops, Protests . . . Contact: Support-In, Box 11284, Eugene, OR 97440. 1- (800) 724-7881. SOCIETY FOR DISABILITY STUDIES (SDS) annual meeting, June 17-20, Crown Plaza Hotel, Rockville, MD (DC area). Topics: policy, law, theory, methods, culture, gender, advocacy/activism, the arts and humanities. Contact Gary Kiger, Dept. of Sociology, Utah State University, Logan, UT 84322-0730 or by EMAIL (Bitnet) KIGER@USU or (INTERNET) KIGER@CC.USU.EDU CLASSIFIED ADVERTISERS PLACE YOUR AD IN The Disability Rag's Classified Page. One time insertion, $1 per word personal, $1.50 per word commercial; discounts for multiple insertions. Send your ad and check, payable to The Disability Rag, to Classifieds, The Disability Rag, Box 145, Louisville, KY 40201. Display ad, one-sixth page: Ad shows drawing of log-cabin style lodge. Text: Blue Spruce Lodge, 451 Marten Creek Road, Trout Creek, Montana 59874 Big Game & Bird Hunting, Trout Fishing, Boating/Water Sports, River Rafting, Hot Tub and Sauna, Country-Style Meals. Phone (406) 825- 4762; 1-800-831-4794. Owned and operated by T-1 Para. Wheelchair accessible. Ad: Moving? Let us know eight weeks before you go. For fastest service, attach your current address label (from back of Rag) to your letter and fill in your new address and mail to: The Disability Rag Subscriptions, 1962 Roanoke, Louisville, KY 40205. Department: We wish we wouldn't see First item is an ad which reads: Hear and be healed Ministries Come expecting to receive HIV+ and AIDS Healed Blind Eyes Opened Deaf Ears Unstopped Relationships Restored Poverty and Debt Cancelled Prisoners Released Addiction Removed In Jesus' Name! Worship: The Reverend Elder Carl Barnwell Teaching: The Reverend Elder Casse Culver Teaching and Worship Service 3:00 pm, Sundays, 1638 R St., NW For more information, please call: 301-261-9161 or 301-593-2638 The tagline below the ad indicates that it was an ad in the November 1, 1991 Washington Blade Submitted by Lisa Small, Washington, D.C. The second item is a newspaper ad in the Feb. 25 Chicago Tribune which shows an empty wheelchair, and a headline which reads, Now people with chronic wounds don't have to take their illness sitting down. Introducing the Good Samaritan Hospital Wound Care Center. The ad was placed by the Good Samaritan Hospital in Oakbrook Terrace, Illinois. The phone number in the ad is 1-800-435-4011. This ad was submitted by several Chicago-area readers. The final item is from the Jan. 1992 Entrepreneur magazine. It is a small ad, with a photo of a wheelchair lift van and a person in a wheelchair getting out of it. The headline reads, "Wheelchair getaways. The text reads, A great business doing great things for people. Some 43 million Americnas suffer from disabilities. Wheelchair Getaways franchise owners rent specially designed vans to the elderly and disabled for as much as $100 a day! Franchise fee: $12,500. National advertising. Full support. Locations nationwide. Own a great business and make a difference in the lives of others with Wheelchair Getaways. Call 1-800-642-2042. This ad was Submitted by Gary Sweet, Redmond, Wash., who writes. "We can now own a franchise making a difference for 43 million suffering Americans -- and gouge them twice the going rate." Text at bottom of department: Do you see things like this -- that just continue the stereotypes? Send them to us and we'll print them on these pages. Please include name and address. Please send clean originals to We wish we wouldn't see . . . , The Disability Rag, Box 145, Louisville, KY 40201. End of We wish we wouldn't see" department. Display ad half page Ad shows cover of Spinal Network magazine Headline: SEX, DRUGS AND BUNGEE JUMPING Subhead: It's all happening in the disability community. Text: And Spinal Network's New Mobility has every bit of it covered. What you missed: the injection erection; pot for spasms -- legally; GM-1: a cure for spinal cord injury? MS treatments and clinical trials; how to get a job and keep your benefits; joy-riding with a joy stock; making babies; high-tech hype: what machines can do for you now. How the ADA is remaking the landscape for disabled people; "walking programs" -- rehab or rip-off; suicide; wilderness access; lots, lots more. What's coming: nursing homes -- your worst nightmare? Lawsuits and litigation; new products; humor, regeneration and cure news; pithy profiles; tough, independent journalism you can't get anywhere else. Headline across bottom of ad: New Mobility: the award-winning, full- service magazine for active people with disabilities. Text across bottom of ad: One year $15, two for $25. Send for free sample. P.O. Box 4262DR, Boulder, CO 80306. M/C or Visa orders call 800-338-5412. The following is a one half page display ad. Headline of ad: King County Department of Public Works Subhead: Solid Waste, Roads and Engineering, Surface Water Management. Second headline of ad: 70 ++ New Positions Civil Engineers & Environmental Professionals Second subhead: Located in Seattle, Washington, we are an acknowledged leader: Text of ad: We operate a state-of-the-art mixed municipal solid waste landfill & six transfer stations Our Surface Water Design Manual and Basin Planning Program serve as national models. Our involvement in an innovative, public/private program, which encourages greater use of alternative transportation methods, is nationally recognized. Our creation of a public/private partnership, the Kind County Commission for Marketing Recyclable Materials, is the first of its kind in the nation. With 1200+ employees and an overall budget of $190M=, we are a leader in creating/coordinating numerous regional activities. Our community's dedication to growth management and environmental protection has resulted in 70++ new openings in 1992. These positions are in a variety of disciplines and at all levels of responsibilities. If you have the foresight, creativity and initiative, we're prepared to reward you with a highly competitive monthly salary: Engineers: $3,027-$3,826 Sr. Engineers: $3,484-$4,407 Supervising Engineers: $3,905-$,985 Program Managers: $3,558-$4,517 Planners: $2,788-$4,002 Sr. Ecologists: $3,321-$4,201 Send your resume, salary requirements and a letter indicating your area of interest to: Recruiter (DR92), King County Department of Public Works, 400 - Yesler Way #250, Seattle, WA 98104-2637. If your qualifications meet our needs, you will receive job announcements as positions become available throughout 1992. Headline at bottom of ad: King County strongly encourages women, people of color and persons with disabilities to apply. End of ad. Display ad, half page. Headline: The HEALTH/PAC BULLETIN Subhead: Covering the Crisis in Health Care Text of ad: The Health Policy Advisory Center is a non-profit, public interest center advocating appropriate, accessible health care for all. The Health/PAC Bulletin, the nation's oldest progressive health policy journal, looks beyond cost containment and fiscal policy to the hart of individual and community health concerns. The Bulletin takes an in-depth look at the crisis of survival among the poor and people of color, reports on health activism as a response to the widening jeopardy of Americans, and challenges the "medical industrial complex" to be adequate to the medical needs of all. End of text. Coupon text: Please send me the Health/PAC Bulletin quarterly. Select one category Individual $35 Institution $45 Student/Low Income $27.50 I already subscribe. Please renew my subscription. 2 years $70. Enclose a check made out to Health/PAC, 47 W. 14th St., 3rd Floor, New York, NY 10011 Contribution to Health/PAC's fight for health rights (includes 1 year subscription) $50 $75 or other amount Coupon has space for Name, address and Boxes to check for Visa or Master Card, line for card number and expiration date. This is the end of the May/June, 1992 issue of The Disability Rag.