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HEALTH / PAC BULLETIN Health Policy Advisory Center Vol. 19, No. 1 Spring 1989 0 The Kowalski Case A Struggle for Gay and Disability Rights page 4 Health Policy Advisory Center ince its inception in 1968, the Health Policy Advisory S Center known - as Health / PAC h-a s served as a unique progressive voice for changing consciousness on domestic and international health priorities. Through the Health / PAC Bulletin and the books Prognosis Negative and The American Health Empire, and in its outreach to a national network of grassroots activist groups, Health / PAC con- tinues to challenge a " medical- industrial complex " which has yet to provide decent, affordable care. IN THIS ISSUE The Fragile Rights of Sharon Kowalski Ellen Bilofsky recounts a medical and legal travesty against gay and disability rights oes ecccse reteset teeesaseenees est cscsamunsitasesuenescniesesetsitees 4 " I'll Be an Activist for the Rest of My Life " Karen Thompson talks about her struggle to restore her disabled lover's lover's rights oeceeecetee tec eseseeseenenenssneesetesesteseeneasenssesissednenseresstiessenrasentnaieeteetey 14 " Taking Control in Our Own Backyards " An interview with Lois Gibbs, toxic waste warrior, on environmentalism in the Bush era .... 17 Bush, the Born Again - Environmentalist Rick Piltz of Renew America assesses Bush's " environmental glasnost " ....... 23 Bush's Budget and the Babies Dana Hughes of the Children's Defense Fund gives the " straight poop " on children's health care under Bush...cccccecccccccccssccscessescescocececcsesscssececesessesteseeses 27 HEALTH / PAC BULLETIN Health Policy Advisory Center Vol. 19 No 1 Spring 1989 Vital Signs Health care in Britain, new wave - anti abortionists - , and other news cous 31 Toward Solomon's Mountain Excerpts from Toward Solomon's Mountain, poetry written by and about disabled people occ cece ce srs rene cette cece ceaeeneeeeeseecudasnerere ieee ctadadeeeeenanes 34 The Kowalski Case A Struggle for Gay and Disability Rightte page 4 Design Sheila Kwiatek, FlowerGrafix Illustrations Phyllis Helland, Timothy McCarthy Front Cover Sharon Kowalski in a Hibbing, Minnesota, nursing home, 1987, Jean Pieri, St. Paul Pioneer Press Dispatch. Back Cover Physician freats youngster at Boston City Hospital. Frank Curran. Health Policy Advisory Center 17 Murray Street New York, New York 10007 212 267-8890 / Health / PAC Bulletin Volume 19, Number 1 Spring 1989 Board of Editors Tony Bale, Robert Brand, Robb Burlage, Anjean Carter, Robert Cohen, Celestine Fulchon, Sally Guttmacher, Feygele Jacobs, Louanne Kennedy, David Kotelchuck, Ronda Kotelchuck, Arthur Levin, Cheryl Merzel, Regina Neal, Hila Richardson, Pam Sass, Herbert Semmel, Hal Strelnick, Ann Umemoto, Richard Younge. Executive Editor Joe Gordon Assistant Editor Caren Teitelbaum Staff Editor Ellen Bilofsky 1989 Health / PAC. The Health / PAC_Bulletin ISSN ( 0017-9051) is published quarterly in the spring, summer, fall, and winter. Second Class postage paid at New York, N.Y. Postmaster: Send address changes to Health / PAC Bulletin, 17 Murray St., New York, N.Y. 10007. The Health / PAC Bulletin is distributed to bookstores by Carrier Pigeon, 40 Plympton St., Boston, MA 02118. Articles in the Bulletin are indexed in the Health Planning and Administration data base of the National Library of Medicine and on the Alternative Press Index. Microforms of the Bulletin are available from University Microfilms International, 300 Zeeb Road, Dept. T.R., Ann Arbor, MI 48106. "ile MANUSCRIPTS, COMMENTS, LETTERS TO THE EDITOR, AND SUBSCRIPTION ORDERS should be addressed to Health / PAC, 17 Murray St., New York, New York, 10007. Subscriptions are by $ 35 membership for individuals. Institutional subscriptions are $ 45. N Health / PAC Bulletin Spring 1989 Ropes'Round a Wheelchair his issue's lead article tells the important story of what hap- T pened in Minnesota's courts, hos- pitals, and nursing homes to a recently disabled 32 year - - old woman named Sharon Kowalski. Her chances of leading the fullest life possible following a devastating accident were thwarted by the prejudice, ignorance, and timidity of her family and of health care and legal professionals. She would be confined to a nursing home today, were it not for her lover, Karen Thompson, who resisted attempts by Kowalski's parents to severely limit their daughter's rehabilitation and social world. Because of the struggle that ensued over the way she was treated, her name has come to symbolize important links between the gay and disability rights movements. The Kowalski case has many ramifica- tions, but at its center rests a stark, discom- forting fact: a woman was made a prisoner within institutional walls because she was disabled and gay. Because she could not speak, the courts would not heed her wish- es to be with her lover and friends. Because her family could not reckon with her homo- sexuality or disabilities, she was stripped of her rights and cloistered away. When the courts awarded Sharon Kowalski's father sole guardianship over his daughter, they gave him a power that, left unchallenged, would have made it all but impossible for her to rebuild a meaning- ful life for herself. What happened to this gay couple in Minnesota is also happening to other peo- ple in other places. In a culture that disdains same - sex relationships and discriminates against those who are not able bodied - or able minded - , one's medical and legal rights can be swept away all too easily. The Kowalski case shows just how easily. The fight to free Sharon Kowalski has brought together hundreds of gay and dis- ability rights activists in defense of an indi- vidual's right to make her own choices. It deserves the attention of all who seek a health care system free of prejudice of any kind. That two women were made to suffer so much demonstrates how far we have to go to build a nation that respects all citi- zens, regardless of their capabilities, gender, race, or sexual orientation. That Karen Thompson, in the face of deep prejudice, fought so tirelessly for her lover's rights proves once again that when determined people join hands to fight for what is right, they can move mountains. -Joe Gordon, Executive Editor | F aFRlEEl L =A SHARON KOVALSKT POSIT TER IN SKETS Marks Lyne Spring 1989 Health / PAC Bulletin 3 The Fragile Rights of Sharon Kowalski ELLEN BILOFSKY he ease with which any one of us could sud- T denly lose control of our lives and fall prey to the vagaries of our medical and judicial sys- tems is underscored by the plight of Karen Thompson and Sharon Kowalski. The women, long- time lovers, were tragically separated following Kowalski's disabling automobile accident over five years ago. Although there are many lessons to be learned from this couple's fight to be reunited and to ensure Kowalski a voice in her own care, their story painfully illustrates the fragility of the claims gay and disabled people can make to health and legal rights in this society. Kowalski, a 32 year - - old physical education teacher, was paralyzed in a head - on car crash in November 1983. Two years later, her parents, acting as her legal guardians, forbade Thompson and others from visit- ing her and isolated her in a nursing home not equipped for intensive rehabilitation. Donald and Della Kowalski reacted to the situation with denial. They denied that their daughter had ever been a lesbian and they appeared unable to cope with her profound disability. Faced with Sharon's paraly- sis, they contended that she now functioned as a child, even though others were able to communicate with her on an adult level without difficulty. They used this rationale to avoid letting their daughter She confronted the forces of prejudice, custom, and a host of legal and medical barriers. make her own decisions about her treatment, her visi- tors, and ultimately her institutionalization. Thompson's five year - legal battle - first for guardi- anship of her partner, then to ensure her adequate care and rehabilitation - has become a cause clbre in the gay and disabled communities. Her recent suc- cess, after a string of legal defeats, in convincing a Minnesota court to move Kowalski from a nursing Ellen Bilofsky is a staff editor at Health / PAC. home to a rehabilitation center for intensive treatment and evaluation has focused broader national attention on the struggle for Sharon Kowalski's rights and for the rights of gay and disabled people throughout the nation. Stymied by the legal system in her attempt to obtain some measure of self determination - for Sharon Kowalski, Thompson, although a private person, was compelled to make alliances and turn to political organization. Galvanized by Thompson's story, an unlikely coalition of gay and disabled rights activists spearheaded an energetic organizing campaign to They triumphed over the " white heterosexual, abled bodied -, Christian, male system. " mobilize public support and sympathy. Support groups to " free Sharon Kowalski " began springing up around the country (see sidebar, p.8). To activists for the rights of the disabled, the fact that a woman was virtually imprisoned in a nursing home simply because of her disability spotlighted the fragility of their civil rights. But the story of two lovers, torn apart, first by disability and then by prejudice, had its most powerful effect on lesbians and gay men, for whom it was an object lesson in the precarious nature of their ties under our legal system. Thompson, with the backing of these support groups, confronted the forces of prejudice, custom, and a host of legal and medical barriers including - the courts'refusal to admit crucial evidence about Kowalski's competence. So, on February 2nd of this year, when Thompson walked into her lover's room after a three - and - a - half - year separation, it was much more than a personal victory. It was a triumph over what Thompson calls the " white, heterosexual, able- bodied, Christian, male system " that had separated them. And it represented symbolic victories for the recognition of the relationships of lesbians and gay men and for the self determination - of disabled peo- ple. Karen Thompson's goal is to win a say for Sharon 4 Health / PAC Bulletin Spring 1989 Kowalski in the direction of her own life and, ulti- mately, to bring her home. But whether or not she succeeds, her efforts have clearly gained a significance far beyond their effect on these two women and their families. Coming Out The complex ramifications of the case are revealed in the tangled history leading up to the recent court order that reunited the women. Kowalski and Thompson were lovers who had pledged themselves to be life partners, had bought a house together, and had exchanged rings as a symbol of their commit- ment. Although they had lived as a couple for almost four years in St. Cloud, Minnesota, where Thompson is an assistant professor of physical education at St. Cloud State University, only their closest friends knew about their relationship. On a cold, drizzly Minnesota afternoon in Novem- ber 1983, Kowalski was driving her visiting niece and nephew home, when a car driven by a drunk driver smashed into them. The accident killed her niece, severely injured her nephew, and left Kowalski comatose, brain injured, and ultimately a quad- riplegic. At St. Cloud Hospital, Thompson was initially denied access to Kowalski because she was not " fami- ly. " Once admitted, Thompson remained at her lover's side, searching for ways to break through Kowalski's silence. It was Thompson who noticed the minute movements of Kowalski's right index finger, the first sign that, despite the doctors'skepticism, she might come out of her coma. Thompson's constant presence began to disturb the Kowalskis, who asked her to stop spending so much time with their daughter. Fearing that she might be forbidden from visiting altogether, Thompson met with a psychologist at the hospital. On his advice, she wrote a frank letter to the Kowalskis explaining her lesbian relationship with Sharon, in the hope that it would help them understand and appreciate her unusual devotion to their daughter's recovery. Their response was anything but accepting. Debbie Kowalski, Sharon's sister, called at the request of her parents, and, as Thompson recalls, told her: " You are a sick, crazy person who has made up this whole story.... My parents never want to set eyes on you again! " Fearful of losing access to her lover, Thompson filed in court for guardianship of Sharon Kowlaski in March 1984. When the matter dragged on, Thompson settled out of court, hoping to avoid a protracted bat- tle. The settlement named Sharon's father, Donald, a retired miner, as guardian. Although this would prove to be a bitter setback, it did not seem a defeat for Thompson at the time. The court recognized that she had a " significant relationship " with Sharon Kowalski and was a " suitable and qualified person to be guardian, " and the settlement gave Thompson equal access to Kowalski's medical and financial information and assured her equal visitation rights. Dispatch Dispatch Dispatch Dispatch Dispatch Dispatch Dispatch Press Press Press Press Pioneer Pioneer Pioneer Pioneer Pioneer Paul Paul St. , Pieri Pieri Pieri Jean Jean Sharon Kowalski, with an alphabet letter board she used to communicate, in her room at the Leisure Hills nursing home in 1987. She has since been moved to a rehabilitation center for intensive treatment and was found capable of using a speech synthesizer. In the first two years following the accident, Thompson continued to spend all her spare time with Kowalski to encourage her recovery, often staying with her from 6:00 AM until midnight and leaving only to teach her classes. In time, Kowalski was once again able to accomplish simple tasks, such as comb- ing her hair, eating instead of being tube fed, and drinking from a cup. Perhaps most important, she began to communicate, first by moving her finger to indicate yes or no in response to questions and even- tually progressing to typing out words and phrases and even speaking on occasion. When, about a year after the accident, Kowalski was moved to a nursing home in Duluth, a three - hour Spring 1989 Health / PAC Bulletin 5 drive each way from Thompson's home in St. Cloud, and Thompson could no longer spend the better part of each day with her, Kowalski regressed. Thompson maintained that her work with Kowalski reinforced the professional rehabilitation she received and enabled her to make the progress that she did. Notations in Kowalski's medical records, as well as the courtroom testimony of a few health care work- ers, confirms that she was indeed more alert and responsive around Thompson. Separation Soon matters got even worse for Thompson. In July 1985, Donald Kowalski, after trying unsuccessfully several times to bar Thompson from seeing his daughter, finally won unrestricted guardianship. The court reached its decision partly on the basis of testi- mony from medical experts (supplied by the Kowalskis'attorney) that Sharon Kowalski couldn't adequately understand her situation or reliably com- municate her wishes. These physicians also supported the family's contention that Thompson's visits were causing Sharon Kowalski to become depressed. The court accepted their assessments despite the fact that none of these doctors had treated Sharon Kowalski on a regular basis or had ever seen her interact with Thompson. In winning full legal power to direct his daughter's care without the previous limitations, Donald Kowalski also secured the right to decide who could or couldn't visit her. The Kowalskis immediately moved her to the Leisure Hills Health Care Center in Hibbing, which was closer to their home and even further from Thompson's. The move was permitted despite the fact that the court had previously ruled that this nursing home, which lacked appropriate rehabilitation facilities, was unacceptable for Sharon. The parents also ordered the nursing home to screen Thompson's goal is to win a say for Sharon Kowalski in directing her own life. all of her visitors and expressly prohibited any com- munications from Thompson. While Thompson appealed the court order, she was able to see Sharon Kowalski for one final six day - visit. She found her regressed and withdrawn. Her feeding tube was back in place, and her typewriter, her most important tool of communication, was missing. According to Thompson, on the last day of her visit, before she was permanently barred from the nursing home, Kowalski typed out these words on a typewrit- er provided by Thompson: " Help me. Get me out of here. Please take me home with you. " H53 Dispatch Dispatch Dispatch Press Press Press Press Pioneer Pioneer Pioneer Pioneer Paul St. , Pieri Pieri NE a Jean Jean Sharon Kowalski with her parents, Don and Della Kowalski, at the Leisure Hills Nursing Home in Hibbing, Minnesota, in 1987. Competency Evaluation The Kowalski family appeared to be forsaking any plans of continuing the rehabilitation of their daugh- ter, who barely resembled the independent, active, able bodied - woman they remembered. One condition of the order granting Donald Kowalski unrestricted guardianship of Sharon Kowalski was that she be test- ed for competency within a year and every 6 to 12 months thereafter. Minnesota law specifically requires that a guardian, in addition to ensuring that there is adequate care and treatment, arrange for the regular evaluations of the competency of his or her ward. But it wasn't until Thompson filed a legal motion to have Kowalski restored to capacity (and thus regain deci- sion making - power) that an evaluation was finally 160 Health / PAC Bulletin Spring 1989 has been able to see visitors with her doctors ' C approval. She quickly made it clear that she wanted to see Thompson. When Thompson was reunited with Kowalski on February 2, she found her excited, alert, and responsive, but confused and with some deterio- ration in her physical condition. After further treat- ment, the judge will evaluate Kowalski's ability to Sharon Kowalski was an active outdoorswoman before her accident. conducted, over the guardian's strenuous objections, in September 1988. Clearly, as is so often the case, the court viewed the parents'guardianship as sacrosanct, despite their fail- ure to meet the requirements of state law. Without Thompson's intervention, Sharon Kowalski might have remained perpetually confined in an inadequate nursing home. Thompson's persistence succeeded in preventing the courts and the family from locking the door and throwing away the key. Five years after the accident and three years after Sharon Kowalski was confined to the Leisure Hills Nursing Home, a team of three physicians declared her officially capable of communicating and express- ing her needs. On January 17, Sharon was sent to the Miller Dwan - Medical Center in Duluth for intensive " I'm hoping she can tell the judge,'Look, I am a human being. I have to make choices on the way I live my life. " make decisions about her life and will decide on her future placement. Most likely this will be in a long- term rehabilitation center. Although guardianship is not an issue in the current proceedings, it is clearly in the court's power to further limit Donald Kowalski's control over his daughter and to grant her a greater degree of self determination - . Thompson says she hopes that as her rehabilitation progresses, Sharon Kowalski can be sent to a transitional center for inde- pendent living, with the goal of ultimately returning home. Karen Thompson, left, and Sharon Kowalski lived together as a couple for four years before Kowalski was disabled and her parents separated them. " The father would rather have her be a vegetable in a nursing home than be a lesbian. " 6 2W rehabilitation and reevaluation. The Kowalskis protested the move, claiming it would disrupt Sharon's treatment, and the family physician, Dr. William Wilson, wrote to the judge, calling the move medically inadvisable. Until the court approves other arrangements, the Kowalskis'guardianship remains in place, but Sharon Spring 1989 Health / PAC Bulletin 7 Intertwining Prejudices While Sharon Kowalski's fate is being decided by physicians, lawyers, and judges, a growing number of people who feel their lives could be affected by the outcome of this case largely - gay men and lesbians and disabled people - are fighting for the right to make such decisions themselves. Gay and disability rights activists say the issues of sexism, homophobia, and disability prejudice are inseparably intertwined in this case. Paula Ettlebrick, Legal Director of Lambda Legal Defense and Education Fund, a New York gay rights organization that has provided legal consultation to Thompson, says, " This case illustrates the worst of both homophobia and handicapism: the total disregard for Sharon as a disabled person and the total lack of respect or recognition of her relation- ship with Karen. " The blatant prejudice against homosexuality infect- ed nearly everyone connected with the case: the par- ents, the judges, the doctors. It clearly prompted the judges to ignore the evidence on record that Thompson had a consistently positive effect on Kowalski's rehabilitation. And ultimately it was homophobia that isolated Thompson and prevented FREE BRING SMARON SMARON SMARON SMARON $ SHARON KOWALSKI COMMITTE SMARON HOME HOME : Campaigning to Free Sharon Kowalski " I'm not really an organizer, " says Judith under those laws, " I think we're pretty lucky to Heland Phyl is Lindquist, founder of the New York Committee to Free Sharon Kowalski, one of 17 such support have had these people fighting for those sorts of protections well ahead of our need for them. " groups around the country. Lindquist says she initiated the committee in November 1986 after hearing Karen Thompson speak. The New York committee is one of the most active and diverse, with gay, straight, able bodied - , disabled, black, white, male, and female members. The New York committee has sponsored speaking engagements for Karen Thompson, held fund raising - dances, and helped to gener- ate media coverage of the case. Currently, they are holding workshops to help participants exe- cute durable powers of attorney. A petition Like some of the other local support commit- tees in cities such as Boston, Los Angeles, Houston, and Madison, Wisconsin, it began as a campaign they initiated, requesting the Minnesota attorney general to investigate the case, generated 5,000 signatures from all over gay group. While many in the gay community reacted immediately and personally to the story of two homosexual loyers separated by tragedy and discrimination, the disabled community ee was slower to get involved. But, as the facts of the case became more widely known, their con- cern about the denial of Sharon Kowalski's rights as a handicapped person drew them into the organization. Working together has served to break down prejudices previously held by members of both groups. Recalling his past attitudes toward gays, Jerry Nuzzi, a member with cerebral palsy, said, " I should have known better because of my dis- ability. " Gay members also became sensitized to disability rights issues, for example, learning to FREE print promotional materials in large type and to make sure that all events are held in wheelchair- Marks accessible spaces. Lindquist says she and other gay members have also developed a new appre- SHAKC 0 ciation of the relationship of disability rights to Lyne gay rights. " If it weren't for disabled people and NOW the laws they fought for in the past that protect against discrimination on the basis of disability, we would be in trouble right now in regard to the AIDS crisis, " she explains. Because people with AIDS are considered disabled and thus fall Jerry Nuzzi, member of New York Committee to Free Sharon Kowalski, speaking at National Free Sharon Kowalski Day rally in New York City, August 7, 1988, as interpreter for the hearing impaired translates. 850 Health / PAC Bulletin Spring 1989 her from helping to rehabilitate Sharon Kowalski. It may be fair to speculate that the family's fear and loathing of their daughter's lesbian relationship com- pelled them to deny her needed medical care. As Thompson's lawyer, Sue Wilson, puts it, " The father would rather have her be in a nursing home and a vegetable than be a lesbian. " The denial of Sharon's rights to adequate rehabilita- tion constitutes disability prejudice, says Marilyn Saviola, executive director of the Center for Independence of the Disabled in New York and mem- ber of the New York Committee to Free Sharon Kowalski. " The fact, very simply, is that no matter if Sharon were a lesbian or straight, if she could speak, none of this would have happened to her, " argues Saviola. " Her competency was being threatened because of her disability. " The point is well taken. After the accident, Thompson began to realize that Kowalski's disability radically altered how people viewed and treated her. Kowalski's parents - even her doctors and other health care professionals - assumed that because she could not speak or move, she was totally helpless. From her inability to speak, they extrapolated an Kowalski Day, it grew into a national protest and celebration of her 32nd birthday held in 21 cities. The event not only generated widespread coverage in the mainstream media, but the judge and the Kowalskis'attorney were be- sieged with calls from around the nation. Activists say this marked a turning point in the atmosphere surrounding the case, which led to the reevaluation of Sharon Kowalski that ended her isolation. -E.B. Judith Lindquist, chairperson of the New York Committee to Free Sharon Kowalski, speaking at the National Free Sharon Kowalski Day rally. Lindquist Lindquist Lindquist Lindquist Lindquist Judith Judith Judith Judith Marilyn Saviola, member of the New York Committee to Free Sharon Kowalski, at a meeting of the national committee in New York City, June 1988. the country. Members of the New York commit- tee originated the idea for a greeting card cam- Marks paign, encouraging people to send Sharon Kowalski holiday greetings and birthday cards. Lyn e After the committee succeeded in having August 7, 1988, proclaimed Free Sharon Spring 1989 Health / PAC Bulletin The e BeLove. FREE SHARON KOWALSKI NATIONAL 9 ONE WAY Visuals Impact /Binder Dona Karen Thompson as grand marshal of the 1987 New York City Gay Pride March, along with John McNeill, a gay priest who was expelled from the Catholic church. inability to think. For instance, she has never been asked to testify in court or attend any of the hearings that have decided the course her life would take. Jerry Nuzzi, a member of the New York Committee to Free Sharon Kowalski and himself disabled with cerebral palsy, says, " I'm hoping that when the judge finally The courts ignored or refused to admit the evidence of her competence. decides on her competency, she can be rolled into court, or, better yet, she can roll herself into court in an electric wheelchair, and she can tell the judge, either with a letter board or some other electronic device,'Look, I am a human being. I am competent. I have to make choices on the way I live my life. " " But as a disabled person, Kowalski was judged incapable of having legitimate desires of any kind, including sexual. Although Kowalski told Thompson that she still loved and wanted her, she was prevented from having any contact with her lover by her family, her doctors, and the court, all of whom rejected any notion that she might still think and feel like an adult woman. " What the hell difference does it make if she's gay or lesbian?... She's sitting there in diapers, " Donald Kowalski once told reporters. Arguing in favor of the enforced separation, Dr. William Wilson, the Kowalski family physician, even testified in court that the previous relationship between Thompson and Kowalski created the potential for sexual abuse of the disabled woman. A number of other medical personnel involved in Kowalski's care were also influenced by this combina- tion of prejudices. Some were so blinded by Sharon's apparent helplessness that they assumed she had no potential for rehabilitation - something disabled 10 Health / PAC Bulletin Spring 1989 rights activists say is not uncommon. Many hospital workers also assumed from the beginning that because Thompson was not " family, " she had no right to be involved in Sharon's care and treatment. Even when they observed that Kowalski responded best in Thompson's presence, the majority of care givers - were hesitant to say so in court. The issue of Sharon Kowalski's competence to make decisions for herself is, of course, central to the case. Kowalski was judged incapable of having legitimate desires of any kind. But the fact is, because of the weight given to the fam- ily's perception of her helplessness, Kowalski was never given a fair chance to demonstrate her capabili- ties. Again and again, her abilities were glossed over or ignored. Less than a year after the accident, Thompson made a videotape showing Kowalski answering questions, combing her hair, drinking from a cup, and playing checkers. At various times during her hospitalization and treatment, representatives of a local handicapped services program and the Minnesota Civil Liberties Union visited Kowalski. Each reported holding extensive conversations with her, which included, among other topics, discussions of her sexuality and requests for services. The courts ignored or refused to admit this evi- dence of her competence (and denied her various requests) in favor of the testimony of medical experts who had never treated her. According to patients ' rights advocates, judges often prefer to rely on the opinions of so called - neutral medical experts who spend a few hours with the patients, assuming that care givers - who come to know their patients will become biased and render an overly optimistic assess- ment of their abilities. The courts presumed Sharon Kowalski incompetent until proven competent, in- stead of the reverse. Guardianship: Who Decides? The Kowalski case clearly raises complicated ques- tions about guardianship. For example, who should have the right to make vital decisions for someone who is deemed incompetent? The potential for abuse of the guardianship arrangement has sparked much debate in the gay community amidst its struggle to cope with the AIDS epidemic. While some may resist comparing Kowalski's situation to that of people with AIDS - since guardianship could be necessitated by any incapacitating illness or accident - the parallels are only too clear. Some people who have been dis- abled by AIDS have been forced out of the closet by their illness, only to be separated from their lovers by parents who have assumed guardianship. As in the Kowalski case, the courts will generally presume that a guardian should be a close family member, regard- less of a disabled person's other significant relation- ships. Organizations like the Lambda Legal Defense and Education Fund are working to reform the mar- riage statutes to legally recognize lesbian and gay relationships. But gay and lesbian activists point out that they are not alone in falling victim to the legal system's bias in favor of the traditionally constituted family. It is not difficult to imagine how unmarried heterosexual cou- ples without legal ties to their partners could be affected. Nor is it improbable that a member of a long separated - couple might become injured and the former partner assigned as guardian. Elderly people are particularly at risk of being declared mentally incompetent when only their physical powers have waned. Even securely married couples are threatened, as was the case when anti abortion - advocates recently filed for guardianship of a comatose pregnant woman at a Long Island hospital. They tried to prevent her husband from approving an abortion for her that, he argued, had the potential to prolong her life. " Sharon Kowalski has lost the right to choose who she may see, who she may like, and who she may love. " Although the plaintiffs had no relationship to the patient, and their motion was eventually denied, they nonetheless succeeded in delaying the abortion while they appealed the case to the Supreme Court. A major objective of the support groups that have sprung up around the Kowalski case is to educate people, regardless of sexual orientation or marital sta- tus, to protect themselves from the possibility of simi- lar abuses of guardianship arrangements by using a legal vehicle known as a durable power of attorney. A durable power of attorney allows a person to desig- nate a proxy decision maker to act in his or her behalf should he or she become incapacitated. Similar in intent to a living will, it is called durable because, unlike most powers of attorney, it remains in effect even after the signer is mentally incapacitated. (Details of this procedure, whose legality varies from state to state, can be found in the appendix to the recently published book about the case, Why Can't Sharon Kowalski Come Home? by Karen Thompson and Julie Andrzejewski, Spinsters / Aunt Lute Book Co., Spring 1989 Health / PAC Bulletin 11 San Francisco, 1988, or from the National Committee to Free Sharon Kowalski.) One of the most disturbing aspects of the role of the guardian in this case is the extent of the control Donald Kowalski exercised in making decisions, such as limiting his ward's visitors, that went far beyond her medical needs. Kowalski was appointed his daughter's guardian because the courts presumed that, as a father, he had only her best interests at heart. Although his actions did not bear that out, the courts did not set limits on his power. In one of the many bizarre legal twists of the case, a Minnesota appeals court ruled that the Minnesota Patient Bill of Rights, which guarantees patients the right to choose their own visitors, applies only to health care facilities, not to guardians, and thus did not protect Sharon Kowalski. As the Minnesota Civil Liberties Union wrote in a friend of the court brief: " The convicted criminal loses only his or her liberty; Sharon Kowalski has lost the right to choose who she may see, who she may like, and who she may love.... [T] he court made... no finding that it was medically necessary to termi- nate Ms. Kowalski's relationship with her friend although that was the obvious result of the order [granting Donald Kowlaski control over visitation]. " Who Failed Sharon Kowalski? When a person is incapacitated, as Sharon Kowalski was, the legal and health care systems are charged with protecting her and ensuring that she receives the best and most appropriate care possible. In Sharon Kowalski's case, the medico - legal system failed on both counts. While the courts focused on the conflict between Kowalski's parents and Karen Thompson in this adversarial encounter, Sharon Kowalski's own health Members of ACT - UP, advocating the right of same- sex couples to marry, occupy the marriage license bureau in New York City as part of National Free Sharon Kowalski Day. MARRIAGE LICENSE FEE $ 10.00 10.00 Be Certain To read boo sides of t app a. PLEASE NOTE YOU MUST SPECIFY CHANGE OF LAST XAMES OF BACK OF APPLICATION He Ave Family Tom McKitterick / Impact Visuals & oa a 12 Health / PAC Bulletin Spring 1989 and legal rights were blatantly neglected. Societal prejudices were built into the court's assumptions that Sharon Kowalski was incompetent in all matters and that, in the words of attorney Sue Wilson, " father knows best. " The judges failed Sharon Kowalski by attending only to the evidence that supported their prejudiced assumptions. Health care workers failed Sharon Kowalski by allowing prejudice to blind them to Kowalski's progress and denying her the support she needed to continue. They failed to act as her advocate, permitting her parents to make decisions inimical to her recovery without protest. Existing protections for incapacitated individuals- such as patients'bills of rights and legal obligations imposed on guardians to have their wards tested peri- odically for competency and to provide them with adequate care are insufficient as long as the courts enforce them selectively. We need to design and enforce policies that can preserve the rights of the family without abandoning the patient. A first step is to ensure that the courts consult the wishes of the patient whenever possible, not soley relying on the interpretation of the family or medical experts. Had they done so in Sharon Kowalski's case, her institu- tionalization might have been more rehabilitative and less like an incarceration. Because the outcome of Karen Thompson's legal battle hinges on a judgment of Sharon Kowalski's individual competence and of her wishes, whether Thompson ultimately wins or loses in court will not change the central questions this case raises nor alter the relevance of the movement it has fomented. Even the most devastating decision, one that found Sharon Kowalski incompetent and allowed her father to retain unlimited guardianship, would not influence the competency evaluation of another disabled person in a similar situation. For Thompson to have won reentry into her lover's life and for Sharon Kowalski to have regained some control over whom she may see marks a recognition of both the legitimacy of gay relationships and the autonomy of disabled individu- als that is precedent setting in this age of AIDS. But simply by sustaining their fight and being willing to make it public property, Karen Thompson and Sharon Kowalski have already won an important battle. The National Committee to Free Sharon Kowalski may be reached at 1725 17th Street, NW, Room 515, Washington, D.C. 20009, 202 () 667-3415. Spring 1989 Health / PAC Bulletin 13 " I'll Be an Activist for the Rest of My Life " Interview with Karen Thompson Karen Thompson is an unlikely hero for a protest move- ment. Athletic and quietly religious, she had never attended a demonstration until she became enmeshed in her own struggle. When Thompson's lover of four years, Sharon Kowalski, became disabled in an automobile accident and her parents began legal action to bar Thompson from visit- ing her, all that changed. Desperate to prevent Kowalski from being isolated by relatives and physicians who believed her no longer capable of thinking or acting for her- self, Thompson was left with no recourse but to bring her case before the public. Thompson says she had to learn to reveal herself, to write and speak, but most of all, to under- stand. Whereas only a few years ago, this 41 year - - old professor of physical education at Minnesota's St. Cloud State University refused to join a class action sex discrimination suit there because she felt she had never been the victim of such bias, Karen Thompson has become a self proclaimed - activist for the rights of others. She says that she suffered more when she was silent than when she began speaking out. -Ellen Bilofsky Health / PAC: Now that you're able to visit Sharon and to participate in her therapy sessions, why are you continuing with your grueling schedule of speaking engagements and your regular teaching job, in addition to the three - hour drive to visit Sharon? Why not take a break? Thompson: This period is so critical. We have to get Sharon stimulated and motivated, and it's imperative to spend as much time with her as possible. Certainly Sharon is my number one priority. But I have become an activist and I've become a feminist, and there's a price that we have to pay. I'm not going to stand back and hope someone else fights for my rights anymore. I never wanted to talk about Sharon's and my per- sonal life, but, for whatever reason, this story can cross all boundaries of men and women, able bod- - ied and disabled, gay and nongay, activist and nonac- tivist. There's something here that grips people. You can talk about sexism, homophobia, and ableism until you're blue in the face, but until you can make people feel it in some way, you don't reach them. I can give a very intellectual talk discussing those issues, dis- cussing the white, heterosexual, able bodied - , Lindquist Judith Karen Thompson at the National March on Washington for Lesbian and Gay Rights, October 1987. Christian, male system, how that system oppresses people who are different, but when I use examples from the case to show how that system works, people hear. As an educator, I feel that I've made a bigger dif- ference in people's lives in the last couple of years than I've done in 18 previous years. I'm not going to stand back anymore and hope someone else fights for my rights. Usually people fear what they don't know and they don't understand. Once they get to know us as lesbian or gay people, once they get to know Sharon as a dis- abled person, they can overcome that. I was scared to death of Sharon, too, in the beginning. I was scared to touch her. I thought I'd hurt her if I massaged out her fingers. It took me a while to work through my 14 Health / PAC Bulletin Spring 1989 feelings and start to see her as a whole person again a beautiful person with many capabilities. But you have to be around people who are different before you can start to see and get past your own hang - ups. Health / PAC: What do you see as the next step? Thompson: Hopefully, Sharon will have input into that decision. It would be my hope that Sharon will go to a place like Courage Center in Minneapolis, a rehabilitation and transitional center for independent living. I told the psychologist working with Sharon in the hospital, " I don't see any reason why Sharon has to spend the rest of her life in an institution. I think she could be taken care of at home today, although I It's critical that we all come out, not just lesbians and gay men. have it. If I could legally sanction my relationship, this wouldn't have happened to Sharon and me. When Sharon started to come out of that coma, they picked up that Sharon responded more to me than anyone else. It's documented in every institution Sharon was in. So regardless of what our relationship was or was not before, the fact that Sharon responded best with me should have given them the courage to say, " We feel that Karen's important, and you're going to have to deal with it. " Health / PAC: Do you think if you had stepped out of the picture somehow that people would have been able to help Sharon because it wouldn't have been a lesbian issue any- more? Karen Thompson became an activist for lesbian and gay rights in the course of her fight to free her lover. Shown here, center, in the front line of the National March on Washington for Lesbian and Gay Rights. think she'd progress further in a rehabilitative institu- tion if she qualifies. If that makes me a sick, crazy per- son, then I'm a sick, crazy person. " She just looked at me and said, " That's the purpose of rehabilitation. " It is so wonderful to have someone say the same thing about Sharon that they would say for any other patient. I really believe that if the health care people work- ing with Sharon early on would have dealt with the issues themselves, they could have helped Sharon's parents. If they could have told Sharon's parents, " No matter what you feel about Karen, Sharon sees her as a loved one, and it's important for loved ones to be involved in the rehabilitative process. " What matters is what Sharon's feelings are, and if I'm important to Sharon, they can't judge through their eyes that I shouldn't be. Regardless of their feelings, what is best for the patient in this case, what is best for Sharon, would have been to sit down and try to help the par- ents deal with the issues. Health / PAC: Who gets to say who is important in a situa- tion like that, especially when Sharon was in a coma and couldn't be consulted? Thompson: That's why it's critical that all of us come out. Not just lesbians and gay men, but every adult has to come out. We need to talk to people who care about us, about who we are and what's important to us, so people know. If I had had a durable power of attorney in hand, where Sharon would designate me as the person making those kinds of decisions on behalf of her, it would have given the health care peo- ple a leg to stand on so they could have not worried so much about being being sued by the parents. We need that kind of protection. We shouldn't have to Living ANY Loving Liberty ng WASHINGTO GAY RIGHTS Visuals / BinderImpact Dona Spring 1989 Health / P AC Bulletin 15 Thompson: Well, they weren't helping her, though. The issues are all so deeply intertwined, you can't really separate one from the other. I think the underly- ing issue is the homophobia. But I think Sharon's par- ents, in a lot of the statements they made to the press, showed they can't deal with Sharon as a disabled per- son either. I'm not here to hurt Sharon's parents. Sharon needs their love and support, and I have always said that. But Donald Kowalski's quote, " What the hell difference does it make if she's lesbian, gay, or straight? She's laying there in diapers. Let the poor kid rest in peace, " shows his total inability to deal with her as a disabled person. Because she wears dia- pers she's helpless? That doesn't make any sense. A lot of adults wear diapers. I once heard him say she'd be better off dead than living like that. I talked to Sharon, and Sharon told me she wanted to live. So who are we to decide when someone's better off dead? Although, perhaps Sharon would have been better off with a death sentence than what we've con- demned her to for the past three - and - a - half years: total isolation in an institution, not being allowed to see people, and not getting proper care. Health / PAC: Why do you think she wasn't getting the care? Why weren't the health workers in the nursing home giving her the care she needed? Thompson: I don't think they can. No matter how good a nursing home is, they don't have the person- nel. I'm not saying whether this place is good, bad, or indifferent. I've heard awful rumors about the place that scare me to death. But even if they're good, the problem comes right back again to our white, male system that it's a privately owned for profit - nursing home, and it's owned by a corporation who's in it for profit. They have the least amount of staff that they can have and get away with the care. So the nurse's aide can stick Sharon in bed in five minutes, whereas it takes an hour to let Sharon try to brush her own teeth, wash her own face, stick her own arm in her nightgown. It's the difference between Sharon going to bed happy or going to bed totally frustrated. We've got to allow Sharon to do for herself what she can do for herself, and that takes time. Or, it's quicker to dump the food through a feeding tube than it is to take an hour for each meal trying to help Sharon feed herself. People do things because they don't have time to do otherwise, and they have too many patients. Plus there's no way any nursing home can provide rehabilitative care. At best, you get maintenance care. Her one trip down to occupational therapy or physi- cal therapy for 20 minutes isn't enough. Sharon needs intensive rehabilitative care. And they don't have that in a nursing home. Health / PAC: What will you do next, if things go as you hope, and you don't have to be speaking on this case and fighting to get Sharon home? Thompson: I've changed. I probably will be fighting something for the rest of my life. What I've seen about nursing homes I could talk just as long and passion- ately on the need for nursing home reform as I can talk on the case. I hope that I'll be an activist for the rest of my life. We can't just sit back and hope some- body else is going to protect our rights. We've got to be involved. So even if things continue to move for Sharon and me in the right direction, I will still be out there doing things. Maybe Sharon can come out and speak with me. That would be powerful, for Sharon to tell her side of the story. They found her capable of using a speech synthesizer - this woman who's only had an alphabet board to point to letters for the last three - and - a - half years. So I don't see that I'm going to quit speaking for a while. Even if I get Sharon home, I feel a commitment that I have to be out there helping people see and understand. O 16 Health / PAC Bulletin Spring 1989 " Taking Control NO in Our Own TOXIC Backyards " Interview with Lois Gibbs WASTE DUMPS JULY Lois Gibbs is a national leader in the anti toxics - movement. In 1981 she founded - and now directs - the Citizens Clearinghouse for Hazardous Wastes, located in Arlington, Virginia. Gibbs made her entry into environmental action in 1978 at Love Canal in upstate New York. There, con- fronted by her children's unexplained illnesses, she over- came vast obstacles to demonstrate the link between the poi- soning of her community and the seeping wastes of that now infamous chemical dumpsite. As a result of her actions, the words " Love Canal " are now synonymous with industry's abuse of our communities and the environment. Her gifts as an organizer are known by thousands of com- munity residents who are battling the poisoning of their air, soil, and water. CCHW's staff of 12 offers technical exper- tise and other forms of support to over 1,700 grass - roots anti toxic - organizations across the country. In January, as George Bush was being inaugurated, I met with Gibbs in New York City and asked her to assess the prospects for environmental gains under the Bush Administration. -Joe Gordon PEOPLE Mcaster AGAINST TO HWY. 20 AND S Robert Lois Gibbs at anti toxic - waste dump rally in West Lincoln, Ontario. And this guy is not what everybody thinks he is. He comes from the Conservation Foundation, which, very simply, does mediation. It's no different than a mediator between the union and the company; it's no different than mediators in a whole host of different disputes that go on in this country and in other coun- Health / PAC: Bush has been touting himself as the " educa- tion president, " and he's promised to be a president who's going to care about the environment. The first thing that he's done is to appoint William K. Reilly as the administra- tor of the Environmental Protection Agency. How wary should we be of this kind of appointment? Gibbs: I think that the appointment publicly is a good move for Bush. He can baffle the American public into believing that this guy from the Conservation Foundation is heading EPA. Of course he's going to care because he comes from an environmental group. And the public, as unfortunate as this may be, is going to buy into that tired myth and say, " Okay, let's sit back and wait six months or wait a year and give him a chance and see if he can't cure things. " Which is going to slow down all of the movements that have anything to do with health care, environmental issues, anything that EPA is controlling - the Toxic Substance Control Act and the studies on toxic effects. It's not just Superfund, it's not just single issues. It's much broader. Children are being exposed every single day to cancer causing - agents. tries. Their purpose is to find a common ground, a consensus that people can agree on. Well, anybody who goes into a meeting like that is automatically going to compromise an issue. Now, when you're talking about compromising on some issues it's maybe not so bad. But when you're talking about compromising in environment, in environmental health, in studies on the effects of air emissions and the greenhouse effect, the number of skin cancers that are occurring in this country - and you can go on and on and on you're - talking about compromising lives. You're no longer talking about economics, you're not talking about how much we're going to save the tax- Spring 1989 Health / PAC Bulletin 17 payers. You're talking about compromising people's well being - , and compromising them even beyond just their health, because along with health comes health care costs. So you're talking about an entire family- the psychological damage, the health damage, and then later, all of the costs of taking away their houses, taking away their cars, taking away things people worked very hard for. And this is a man who is going to do that. It's just that simple. I've seen the papers from the Conservation Foundation, and I've seen the reports that they do. And yes, they're wonderfully middle of the road. But the only thing that's in the middle of the road is a yel- low line and dead armadillos. You don't see any real good solutions to our problems in the middle of the road. You just see more problems. Health / PAC: So if you were asked to advise Bush on who to appoint who would really be an environmental activist as opposed to a compromiser, where would that person come from? Gibbs: I don't know what groups specifically, but it would come from a group that is an environmental advocate, not a group that is an environmental media- tor. And I think that's an important distinction. Health / PAC: You talked about the urgency of dealing with these life death - and - issues and that Reilly's appointment will really stall action because we have a Congress and even media that say, " He comes with good intentions. Give him time. " What's at stake here? Has the Reagan Administra- tion at its end really done anything at all? What are the urgent issues right now since Bush has been inaugurated? Gibbs: I think the biggest and most urgent issues have to do with Superfund, have to do with front - end waste production, neither of which was addressed. Superfund, which is now ten years old and actually came in at the end of the Carter Administration, has cleaned up 12 sites. So they confess to cleaning up 12 sites. People in those communities would say they are not quite cleaned up yet. Twelve sites out of hundreds and hundreds. We're talking about 1,100 and some odd sites. When you're talking about compromising in environment, you're you're talking about compromising lives. You're talking about children and adults, but I look at children as being the most vulnerable - who are being exposed every single day to cancer causing - agents, to things that are causing them brain damage, that are causing them irrevocable harm. It's not like you can say, " Okay, we'll buy you a new house in a new neighborhood. We'll raise your salary. " We're talking about children - and the White House not car- ing. What has happened under the Reagan Administra- tion that has been very good and that shows the power of the people, is that there has been some new legislation we may be able to push to get enforced over the next four years under Superfund: technical assistance grants, right know - to - legislation - some really tangible tools that people in the field can use to try to win goals. But right now the state of the envi- ronment is horrible. It is worse than it was when Ronnie took office. And Superfund has not moved. McCarthy Timothy Health / PAC: What about these tools? Are these things that have the promise of passage or that have been passed under the Reagan Administration because of advocacy efforts? Gibbs: They actually were passed under Reagan because of grass - roots people. One thing the environ- mental health grass - roots movement has been very successful in doing is building a large, broad base at the local level. So when the congresspeople go home, they have to face these folks. As a result of this bot- tom - up organizing, which I think is imperative if you want to pass anything, we've gotten these pieces of legislation. The technical assistance grants will give community people -- and most of the communities we work with are low income - , rural, and minority com- munities an actual scientist, a Harvard graduate, to go into their community, look at the study, tell them what's right with it, what's wrong with it, what needs to be changed. And then they can speak in a public forum. They can't be baffled by the government scien- tist or the industry corporate scientist, as has hap- pened historically. The right know - to - legislation was important because people can now say, " That black smoke across the street that's been bothering me for 20 18 Health / PAC Bulletin Spring 1989 years now I can go and rightfully ask for informa- tion and they legally have to give it me. " Once I have that, then there are support groups like CCHW that can explain what that means and how it's going to affect you and what steps you might want to think about taking. So these are really important gains as a result of community efforts in the clean up. People said, " We don't want you to do what you've been doing. " And what industries had been doing was moving haz- ardous wastes from Site A to Site B as their clean - up option. And people said no, because the bottom - up base introduced Site A people to Site B people, and it's like, " Well, you can't do that to Kay, " or You " can't do that to Joe, " and as a result, folks saw faces, and they decided they were no longer going to support that and asked, " What is the solution? " The solution is reduction. The solution is new, inno- vative technology that does exist - it's more expen- sive, but it exists. There've been several other things, but again, it's been a result of the grass - roots efforts, not anything the administration did. And it's been very progres- sive. The democratic system works. And people are taking the power, and this particular issue is really mobilizing a lot of them. Health / PAC: You said that the Reagan legacy is just a horror show in terms of the environment, and you put it in terms of children having chronic illnesses and families being devastated by those illnesses. It seems that Bush made an effort in the campaign at least to break away from the Reagan stance on the environment. What would Bush and Quayle have to do to reverse or make real progress away from the rotten Reagan legacy? Are they likely to do anything positive? Gibbs: I would be willing to bet it'll be the same as it was for the last eight years, with a little more superfi- cial coloring. There'll be more, " Gee, I care about this, and I'm going to talk to my staff, " or there'll be a cou- ple of quick - and - dirty media event sort of things. An example is when Times Beach, Missouri, was evacuat- ed years ago because of its dioxin problem. That was a result of Ann Burford and Rita Lavelle's heads being on the chopping block. They got thrown out of EPA and Lavelle was convicted and went to jail because of their behavior and what they did there. EPA was looking real bad, so they ran in and they evacuated Times Beach, which should have been evacuated years before. So what is Bush going to do? A similar sort of thing. It'll be a grandstand event, and it won't be until six or eight months after he's been in office, and we'll see headlines that read: " Bush Taking Control. " That's what we're going to see. What we really need in Washington, which I don't think is going to happen, is willpower. We have a lot of wonderful legislation. Superfund is not a bad piece of legislation. The Clean Air Act is not bad, although it could be improved. The problem is, nobody's enforcing it. The legislation exists. I don't think we necessarily need new laws or new policy changes in how the laws are supposed to work. What we need is the will to enforce those laws. We need the EPA to go after the polluters. We need the EPA to go after those who are dumping illegally and to hold them account- able. The EPA has historically sat on the side of indus- try. When they go in to do a cleanup of a site or a spill, they call in the Justice Department, which asks, " What do you think Occidental Petroleum is going to be willing to pay for this, and how much do you think we can get in an out court - of - settlement? Twenty mil- lion dollars? " Look at all the cleanup costs. They're all twenty million dollars. So they'll go out and negotiate or do a twenty milli-o dno l-la r cleanup. That's not will. I don't think we need more laws. I think we have plenty of laws. I think we need somebody to start enforcing them and using them. We don't necessarily need new laws. What we need is the will to enforce existing laws. Health / PAC: You're saying that we need to have enforce- ment and it's not going to happen under Bush. So what do we do? Gibbs: We do it ourselves. If you look at the past eight years with Ronald Reagan, nothing progressive went anywhere near the White House. And as you look at the legislative history around the environ- ment the nature issues, the forest issues, the park- land - the only legislation under environment that passed was around issues that toxic leaders were Lois Gibbs (right) with May McCastle protesting at the site of an incinerator in Baker, Louisiana. Wastes Wastes Wastes Wastes Wastes Hazardous Hazardous Hazardous Hazrdous Hazardous Hazardous for for Clearninghouse Clearninghouse Clearninghouse Clearninghouse Clearninghouse Clearninghouse Clearninghouse Clearninghouse Clearninghouse Citizens Citizens Citizens Citizens Citizens Spring 1989 Health / P AC Bulletin 19 pushing at the grass - roots level. Nobody was pushing for these forest issues important - ones. Pesticide issues were another instance. There's a big network of people concerned about pesticides, but there's no real grass - roots support. Why? Because these people are migrant workers, for the most part. They're afraid of losing their jobs. There are a whole lot of reasons. It's not the organizers'peak problem or fault. But pes- ticides just never got on the agenda. Nothing progres- sive happened. Toxics issues did, and it's living proof, it's historical proof, that if people organize and take control at the bottom level and push, the top level will come around. In Love Canal, 1978, I asked for technical assistance. It was something that we needed. It wasn't a brilliant brainstorm. I'm not super intelligent. I just needed something. They gave it to me. Then Penny Newman at the Springfellow Acid Pits dump site needed tech- nical assistance; so she got money from the state for her technical assistance advisor. Then Old Forge, Pennsylvania. Then Lake Charles, Louisiana. It went on and on and on. And finally everybody's scratching their heads, saying, " We have to put together some- thing to get us some money from the federal govern- ment to do this stuff. Because we don't want to do this Toxics issues are living proof that if people organize at the bottom level and push, the top level will come around. stuff. We don't want to take it out of our state coffers. We don't want to control it. We're too close to the political fights. " So then the technical assistance grants happened. If you look at the right know - to - legislation, it's the same sort of thing. Grass - roots folks asked for it. The workers actually were the first ones who asked for it in occupational health - and suddenly it worked its way up to D.C., and there it was. If we want enforce- ment, if we want something done, then we have to take control. And we have to take control not at the state house, not at the White House, but right in our own backyards and then work towards the state house, towards the regional, and towards the federal level. Everyone laughs at me and says I'm extremely naive or wishful, but I truly believe that the folks in this country, if they want something, can get it by organizing. Health / PAC: Give us an inspirational story. Gibbs: In Gainesville, Georgia, there's a poor, rural community which was being courted by Union Carbide. Union Carbide wanted to build a plant alongside their lake, which meant jobs to this very depressed community. Half of the community said, " We don't want it, " and the other half said, " We need the jobs and we need the tax base. " The community We have to take control right in our own backyards. opponents brought people from outside who talked about Union Carbide, their past practices, their dis- posal, their air emissions; they brought in people who had experienced physical health problems, who came in and said, " My baby is sick, " or " I am sick. " All of a sudden the community, once educated, understood that there were more risks involved with bringing Union Carbide in, even with all those jobs, than dying of poverty or starvation or lack of health care, and they booted them out. Health / PAC: What is impressive about your organization is that you don't take policy stands without polling the var- ious constituent groups that are part of it, so in a way this grass - roots movement is leading your organization which, in turn, gives back technical expertise to local groups. How can Health / PAC readers plug in? How would you use their energies? Gibbs: One of the biggest obstacles we have are the health care professionals, the primary care people. You walk in and say, " I've been exposed to X, " and they roll their eyes behind their head and they call it hysteria or psychosomatic, give you a bottle of Valium, and send you on your way. People who are not exposed to this from the health care side of things don't understand the cause and effect. A nurse or a nurse practitioner, for example, who is taking care of people who may be exposed, who may be treating the symptoms without realizing that maybe these symp- toms are a result of this exposure he or she could really be helpful by saying, " Why don't you take your daughter out of the city for four days and see if her asthma improves. " You may not be able to move, but at least you'll know the cause of the problem. And there's a whole network of health care and primary care providers who we've been unable to reach, who we need to educate desperately. That's where I'd use them. Health / PAC: One of the articles in your publication, Environmental Health Monthly, showed how public health departments often act like " public assurance " departments. Gibbs: Love Canal's a really good example. We said we had 56 percent of our babies born with birth defects at Love Canal. The health department said, " That's not true. You didn't have 39, you have 34 or 20 Health / PAC Bulletin Spring 1989 32. " There was some difference in the number because ming pool, you're really talking about the toxicity of they threw some cases out. You can throw those num- the active ingredients of two adult aspirin in an adult bers out, you can say we have 42 percent - it's still not a normal number. But what the public heard was that we were wrong. They would just keep coming back and saying there was no cause for alarm, no prob- body of 160 pounds. Would you give those two aspirin to your children every time they drank water? Would you want to be drinking the equivalent of that every time you breathed the air? That's what ten parts lems, we're going to continue to do studies. The other thing they do are these stupid risk assess- per million is. It's not just educating, but it's using things that are really clear, tools that people can use. ments. And then they make these very patronizing analogies. It confuses people. People know they're not telling the truth. For example, they went to Pennsyl- vania and said, " Your risk of getting cancer from this solid waste incinerator is one in a hundred thou- You don't see any good sand. " So this guy stood up and asked them a ques- tion. He says, " Well, we only have twenty thousand people in this community so we won't get any, right? " And the guy said yes! But he didn't come out and say yes. What he said was something else that implied yes. And so here this guy was led to believe that there was no cancer risk in his community. And in Jacksonville, Arkansas, for example, where solutions to our problems in the middle of the road. You just see more problems. they're drinking dioxin in their drinking water in parts per trillion, the analogy they give to people to help them understand is it's only one drop of gin in a swimming pool of vermouth, or a grain of sugar in X pounds of sugar. People know that that's not right. They know that maybe the math works out, but it's not right. But they become very confused and it's very difficult for them to grasp what is really going on here. And the public health departments can get away with doing more studies as a result of that. There is another thing public health officials have done, and this is probably not going to change under Bush but I hope it will. The Centers for Disease Control is in charge of doing a health registry of exposed victims, set up under Superfund. This was another thing grass - roots folks wanted. They wanted some reliable group of doctors to come in and say, " Take my blood, take my urine, take my health histo- ry and tell me where I'm at. Tell me if I'm going to live. Tell me what's going on in my community so I can make personal decisions. Do I have a child now? Do I wait till I leave? " Well, because hazardous waste is a very hot political issue, especially in the White House, given the White House's friends are the petro- chemical industry for the most part, the White House gave orders to CDC not to find any cause - and - effect link between environmental health problems and dump sites. It's not written anywhere. You won't find PETITION McCarthy it. But everybody knows it and everybody will repeat it for you. The White House has no control over the Superfund budget, supposedly, because it comes from Timothy a tax fund, which is different from the budget for the country. But their infectious disease budget they do have control over, and they could cut and slash the infectious disease budget. CDC's thing is infectious disease smallpox vaccination, the children's clinic, the AIDS epidemic. They don't want to see that cut. And they'd be willing to do whatever they've got to Health / PAC: So the strategy is to suppress panic, spread do to keep everybody happy in the environment. out the time that you have to address or not address the Part of doing that is going out and doing these issue. In many ways, the public health response is not that politically bogus studies in communities. In Times 1 different from the industrial response. So information is Beach, Missouri, they said in their study that they found no chloracne - like effect. Chloracne is a skin obviously the answer, and technical expertise on the part of the people who are at risk. lesion that comes as a result of exposure to dioxin. Vietnam vets complained of that same disease. And Gibbs: Straightforward information. We borrowed an analogy from the Sierra Club, an aspirin analogy. They said if you're talking about ten parts per million, then in another part of their study, they said that they did not include anybody from the community who had lesions or was too sick. So the public sees the con- which would be ten drops of vermouth in a swim- clusion that there was no chloracne, but if you read Spring 1989 Health / PAC Bulletin 21 I truly believe that the folks in this country, if they want something, can get it by organizing. the back of the report, if they had it, they weren't included! CDC is doing all these politically motivated studies to prove that there's no problem with dump sites, there's no problem with exposures. So these folks now go to we're court - talking about families who have limited income, some don't even have any health care, especially in the South. Their only way of paying their medical bills is to go to court and try to get a settlement from the responsible parties. For the most part, they're willing to take court out - of - settle- ments because they need the money fast, and they have sick children. All of these reports come flowing out, and they're all used against them in court. So the government is not only screwing us in refer- ence to not enforcing the laws and being in bed with the corporations, but also when it really comes do n to something quite simple like your own basic rights to compensation, to be made whole again, they're screwing us there too. And it's the poor and middle- class people who are really being victimized. J Community residents at hazardous waste site in Michigan. CAUTION KEEP - OUT AREA SY iow a CONTAMINATED c | NYW ITH <a mr INDUSTRIAL 3am Nee, CHEMICALS | MN Le Trea ek. - eta me EN ey, Y AM wwe:. ?. af <a as Library Library Public City York New 22 Health / PAC Bulletin Spring 1989 Bush, the Born Again - Environmentalist RICK PILTZ t seems just about everyone wants to be seen as I an environmentalist these days, including George Bush. " We must have a new attitude toward the environment, " he told Congress in February. " We must respect the environment. " At the beginning of his term, Bush enjoyed something of a cease - fire with some of the environmental policy activists in Washington, although they remember all too clearly his ugly election campaign and his do- nothing record on the environment during the Reagan presidency. Although the cease - fire was temporary, with Bush's negligently slow and insensitive response to the Exxon oil spill in Alaska signalling the opening shots of renewed conflict, there should still be real opportunities to move urgent concerns about environ- mental degradation higher on the political agenda. The era of treating environmental protection as a special interest issue is at an end. During his transition period to the presidency, Bush made statesmanlike gestures to the Washington envi- ronmentalist community, including meeting with a delegation representing about 20 national organiza- tions that presented him with their Blueprint for the Environment. The Blueprint (see sidebar, p.26) contains 700 specific recommendations for federal action to confront " environmental threats of unprecedented proportions. " After the meeting, at which Bush assured the delegates, without making any specific promises, that he would carefully consider their rec- ommendations, the Blueprint representatives were asked to compare meeting with Bush to meeting with Reagan. There was literally no comparison, they had to say, since for eight years Reagan had virtually never spoken with anyone from an environmental group. Bush followed this symbolic action by naming a Rick Piltz is an environmental policy analyst with Renew America, a nonprofit educational organization in Washington, D.C. moderate, William Reilly, the president of the World Wildlife Fund and Conservation Foundation, as the new administrator of the Environmental Protection Agency. At his confirmation hearing, Reilly, the first professional environmentalist to head EPA, said the new administration would offer initiatives on global warming, stratospheric ozone depletion, acid rain, and other problems. He also pledged stronger enforcement of existing environmental laws, which have been crippled by budget cuts and indifference under Reagan. Such kinder, gentler atmospherics are a breath of fresh air after a long period of ignorant and stultifying actions from the White House. Whether this environ- mental glasnost will translate into real change remains to be seen. But surely the era of treating envi- ronmental protection as a special interest issue is about at an end, as it becomes clearer that the cumula- tive effects of human disregard for the environment threaten not only our health but the very viability of our global life support - systems. Ecological Unraveling Probably the strongest example of this shift in awareness was the way record breaking - tempera- tures, coupled with the testimony of scientists in 1988, made the greenhouse effect a household term. Global warming could produce a host of profound and irreversible ecological disturbances in the coming decades, with potentially devastating effects on food production, coastlines, and forests. Environmental advocates hope the widespread realization that we are already in an uncontrolled experiment with the chemistry of the atmosphere and that, from now on, our decisions will affect the outcomes, will stimulate action both at the grass roots and within the policy- making establishment. Bush's actions are part of the problem. But it is one thing for Bush to send emissaries to environmental gatherings and quite another to get him to help overcome the institutional barriers to reducing the rate of global warming. And there are Spring 1989 Health / PAC Bulletin 23 Timothy McCarthy formidable barriers within government and industry, many of which were erected or elevated during the Reagan - Bush administration, to dealing effectively with the many other manifestations of ecological Everyone wants to be seen as an environmentalist these days, including George Bush. unraveling. The list of potential ecological disasters is long: depletion of the stratospheric ozone layer, ocean pollution, disappearing tropical forests, the threat of wholesale extinction of certain animal and plant species, relentless population pressures, ecological breakdown in the Third World, wasteful and harmful use of nonrenewable energy resources, the dangers of nuclear technology, acid rain and other forms of air pollution, pesticide contamination of food and water supplies, the production of massive quantities of poorly controlled toxic substances, hazardous chemi- cal waste dumps scarring the landscape, mountains of unrecycled garbage, irreplaceable prime farmland paved over by urban sprawl, disappearing wetlands, eroding topsoil, and deterioration of national parks- to name just a few. Part of the Problem How can a Republican oilman in the White House be forced to acknowledge that, to avert a radical cli- mate change, we need to fundamentally transform our energy system to do away with its dependence on fossil fuels? Or that the key to doing this is to make major improvements in energy efficiency and move toward a system based on solar and other renewable resources? So far, Bush's actions are part of the problem. Even as the massive Exxon oil spill ruined hundreds of miles of the Alaskan coastline, Bush took the occasion to insist that the petroleum industry can be trusted to safely open up the Arctic National Wildlife Refuge for drilling. At the same time, he continues Reagan's practice of endorsing cuts in the federal budget for solar energy and conservation. But the changing factor in the political equation is the heightened public awareness of environmental deterioration, stimulated by a now seemingly endless parade of horror stories in the media, and the grow- ing sentiment that untrammeled, rapacious develop- ment must somehow be controlled. When Bush adopts a pro environmental - rhetoric, it is clearly in recognition of this concern. To the extent that the American people are ready to put the Reagan era behind them and refuse to be pacified by this rhetoric, the obstacle presented by this pragmatic, opportunis- tic president should not prove insurmountable. There are many opportunities for positive action on the whole range of environmental problems that threaten natural resources and human health. But government and industrial institutions will not give ground or commit the necessary resources without a political struggle that creates pressure from the grass roots up. In the face of a system geared to short - term bottom lines, intense economic pressures for develop- ment, and strong resistance to long term - public plan- ning, we face an unprecedented challenge with high stakes: acting effectively today to prevent a series of future disasters that could shake our society to its foundations. Reagan is history, but it is hard to believe that time is on our side. O Spring 1989 Health / PAC Bulletin 25 Wrenching Power From the Poisoners RICHARD GROSSMAN This article by Richard Grossman is reprinted with ( minor changes) from the February 1989 newsletter The Wrenching Debate Gazette, which he edits. In recent months, he has joined demonstrations and helped organize interregional networking meetings, or wrenches, as he likes to call them, in such places as Wichita, Kansas (home of the Vulcan Chemical plant, " spewer of CFCs and other poisons "), as well as Texarkana, Texas, a city that plays unwilling host to two EPA Superfund sites. For information about the Gazette or upcoming wrench meetings, write: Wrenching Debate Gazette, 1801 Connecticut Avenue, N.W., Washington, D.C. 20009. ast year, seventeen conservation groups put together an agenda for the L new president. In November, they pre- sented their Blueprint for the Environ- ment to George Bush. Their cover letter stressed: " It is essential that we address and solve problems like global warming of the atmosphere, loss of tropical forests and the liv- ing species they contain; and the myriad of assaults on our nation's land, air and water before they cause irreparable harm. This will happen only if you provide strong, sustained leadership. " But haven't the poisoners and destroyers already caused irreparable harm - from the strip mined - mountains of Appalachia to the reeking communities of Springfellow, Love Canal, Ponca City, Geismer, Times Beach, Fer- nold, Warren County, Harrisburg, Four Corners, Hanford, Rocky Flats? And why are there no proper nouns in this Blueprint? No sources for the pollutants are revealed - only lists of symp- toms for concern. These groups do not suggest who is leading those " assaults, " and how " strong, sustained leadership " from the presi- dent is supposed to stop these assaults, should the desire for such leadership be smoldering. The Blueprint reinforces existing power rela- tionships and the way decisions have been made. It does not call for citizen mobilization, for democracy in action. Indeed, it reveals that beyond " protecting " what they narrowly define as " environment, " these groups are pretty satis- fied with how things work. This publication does not " see " the growing disparities between producers and workers, between producers and communities - along with other symptoms of- democracy gone awry - as sources of our plane- tary destruction. It presents a vision of an envi- ronmentally sound, sustainable economy where " reasonable " and " reparable " are still decided by the poisoners, not by the poisoned. The Blueprint is a brake on social action. They help people focus their gazes anywhere but upon the poisoners and destroyers. They make it easy for people who believe it will be enough to " get tough " with hazardous waste, to make environment a " summit topic, " to " encourage recycling " and pray for the president to lead. For me, the Blueprint and similar efforts have the opposite effect of the Wichita meeting. They say we can " get serious " about our " problems " without factoring into our thinking and plan- ning how much of this country's " wealth " comes from poisoning, from making instru- ments of destruction, from exploiting resources and labor of less powerful countries. But as we demonstrated at Vulcan in Wichita, poison and destruction have beginnings. People who are freed to see all the way to these beginnings, who are freed to speak their own language, to plan for goals not ruled out by the poisoners, to mobilize within their neighborhoods and join community with community, can become strong enough to deal on an equal footing with the board rooms, the bank vaults and the govern- ment sanctums. They will be able to stop the poisons and destruction at the place of decision. **** McCarthy Timothy 26 Health / PAC Bulletin Spring 1989 Bush's Budget and the Babies Broken Promises for Health Care DANA HUGHES nce George Bush introduced the phrase a " kinder, gentler nation, " it quickly entered the American lexicon. However tiresome and trite it has already become, the phrase played a significant role in the 1988 presidential elec- tions. Bush narrowed a once sizable " gender gap " by making pledges to address issues perceived to be pri- marily the concern of women, such as child care and health care for children and pregnant women. This phrase was a frequent reminder of that pledge, and post election - polls indicate that voters, especially female voters, were persuaded by his assurances, The effectiveness of the Republican candidate's elec- toral rhetoric is ironic on at least three accounts. First, his promise to expand the Medicaid program to all poor and near poor - children and women emerged from a man who, while vice president - , supported the Reagan administration's repeated efforts to disqualify working poor families from the Medicaid program. Second, though Mr. Bush's opponent was far less con- crete in defining his proposals for financing health care for uninsured children and pregnant women, Michael Dukakis was the first governor to actually Though rhetoric Bush's campaign of promise, whasi sfu llb ufudllg et is anything but kind or gentle. furnish all poor and near poor - infants and pregnant women in his state with public health insurance. Third, though Bush's campaign rhetoric was full of promise, his budget, the actual blueprint for his administration, is anything but kind or gentle. The inadequacies of Bush's response to the nation's health care crisis can be seen in the meager attention Dana Hughes is the former Assistant Director for State and Local Affairs of the Children's Defense Fund in Washington, D.C. he gives in his first budget summaries both to mater- nal and child health issues and to the health needs of all Americans. On many of the important spend- ing choices, the Bush budget offers no recommendations and thus presumably accepts the pri- orities set forth in the bud- get developed before Reagan left office. In other respects, the Bush budget is potentially even more damaging to chil- dren's health and social service programs than Reagan's propos- als. Although Bush proposes some funding increases, his budget directly threatens other critically important programs and services. Programs, Yes; Funding, No President Bush's budget proposal is based on his " flexible freeze " concept. Under this proposal, the majority of federal public health, education, child welfare, and social services programs are put into a pool whose total budget must be cut between $ 9 and $ 11 billion from current service levels. As a result, most such programs will be subjected to substantial reductions. Put another way, Bush places most pro- grams for children in budgetary limbo, leaving them vulnerable to cuts at least as serious as those sought by Reagan. At the same time, this " flexible freeze " allows military spending to}) = grow at a rate above that of inflation. Despite his campaign pledges, Bush's budget pro- Heland posals would do little to ameliorate the health prob- Phyl is lems facing children and pregnant women. Candidate Bush proposed extending Medicaid to all poor chil- dren younger than 18 and phasing in coverage of all pregnant women and children with family incomes under 185 percent of the federal poverty level. President Bush calls for a down payment on this promise for women and infants in 1990 coverage - of those with incomes less than 130 percent of poverty. (Under current law, states must, by 1990, cover all infants and pregnant women with incomes below 100 percent of the federal poverty level.) He also calls for new coverage of children younger than 5 in families Spring 1989 Health / PAC Bulletin 27 McCarthy McCarthy Timothy Timothy 4 with incomes of up to 130 percent of the poverty level - an important step, since eligibility levels for children in some states are as low as 15 percent of the poverty level. Bush proposes no new funding for the Medicaid program, however, only enough to maintain current services. His budget would offset the cost of the pro- posed expansions in services by reducing federal Medicaid payments to states for program administra- tion. Thus, at the very least, states would be required to expand benefits and services at the same time their funds for administration are slashed below the level needed to maintain existing services. If past experi- ence is any gauge of how the states will respond to the new federal mandate, rather than seek new fund- ing sources to finance the care, most would reduce benefits to those currently enrolled and / or revise eli- gibility standards to disqualify groups now covered. Without any additional federal funds to assist states in financing the expansion of services, it is virtually certain that new groups of children and pregnant women would receive Medicaid coverage at the expense of other low income - children and their fami- lies or the elderly and disabled poor. President Bush's proposal to provide Medicaid cov- erage for young children is also far narrower than his pledge as a candidate. By setting the income standard at 130 percent of poverty and the age limit at 5, Bush excludes millions of uninsured children. Moreover, this new group of children would be eligible only for immunization services under the expanded Medicaid coverage. These children would thus be denied criti- cally needed health services that are available to all other children covered by Medicaid, including peri- odic health, developmental, hearing, and vision screening; referrals for follow - up care; and inpatient and specialized services for children with identified problems. Meanwhile, the Bush budget lets stand Reagan's proposal to reduce funding levels for the federal immunization program. Thus, millions of uninsured low income - children would remain ineligible for immunization coverage under his Medicaid expan- sion program. Because of the high cost of vaccines, especially given the rates at which Medicaid reim- burses for them, many private physicians do not offer immunization services to their pediatric Medicaid patients but instead send them to local health depart- ments and community health centers. Yet the budget also proposes freezing spending for these community and migrant health center programs at fiscal year 1989 levels. Without an adjustment for inflation, this proposal amounts to a real cut which, if sustained, would mean at least 200,000 fewer people served by these health centers next year. Thus, by providing Medicaid coverage for immunization services without the resources to maintain capacity, let alone increase it, the Bush plan is unlikely to enhance the provision of health care services to children. During the campaign, Bush also proclaimed his support for the Supplemental Food Program for Women, Infants and Children (WIC), but he did not modify Reagan's 1990 budget request for the pro- Bush's real failing is his silence about people of all ages who lack needed health care. gram. That request was $ 47 million less than what the Congressional Budget Office estimates is needed to maintain current service levels and would result in at least 75,000 fewer women and children being served. This would come at a time when fewer than 50 per- cent of women and children who meet nutritional and income eligibility standards are actually served. 28 Health / PAC Bulletin Spring 1989 Providing Providers Expanded Medicaid coverage will do little to improve access to health care without a sufficient number of health care providers. Yet, a large and growing number of communities throughout the country have no providers of maternal health care who will treat publicly insured patients. In California, for example, 16 counties have no obstetricians who take MediCal patients. While the problem is not new, the lack of health care providers for low income - patients, especially obstetrical patients, has become so acute that, according to some observers, additional expansions of Medicaid will have only minimal effect. Bush has focused on a population for whom remedies are relatively inexpensive as well as politically palatable and expedient. to create a major health care crisis among infants and pregnant women. Witness the following: e@ In 1986, the infant mortality rate increased in 15 states and the District of Columbia. That year, the United States ranked 18th in the world in infant mortality, even behind Singapore. Infant mortali- ty among blacks in the United States would have ranked 28th in the world, behind that of Cuba and Bulgaria. @ In 1986 for the second year in a row, there was no statistically significant decline in the national infant mortality rate for black infants. White infant mortality has improved only modestly throughout the 1980's; but the improvement has so outpaced that of blacks that the disparity between black and white infant mortality rates in 1986 was the widest since such rates were first recorded by race in 1940. Meanwhile, as funding for community and migrant health centers is threatened, existing sources of health care providers for underserved populations face extinction. In 1981, the Reagan Administration began to phase out the National Health Service Corps (NHSC). About 3,600 health professionals are current- ly placed in underserved areas through the NHSC scholarship program, but the number remaining in community placements will fall by more than 1,000 over the next three years. A loan repayment - program, established by Congress in 1987 to replace the scholar- ship program, also obligates students to work in underserved areas in return for assistance in repaying their loans. With only 68 slots currently funded, how- ever, this program cannot begin to fill the void that will be left after the last NHSC scholarship recipients are placed in 1992. Bush's budget does nothing to avert this potential crisis, but instead retains the Reagan proposal to further reduce funding for NHSC. Promises, Promises It is well known that political promises are not matched by legislative programs. Americans have come to expect no less from their political leaders. But the issues that Bush raised in the campaign are of McCarthy great importance. The dramatic process by which Timothy medical insurance has become unavailable to such a large proportion of the population, the growing num- bers of Americans falling into poverty, and the dis- mantling of the meager and fragile federal, state, and. local health and social service systems have combined Spring 1989 Health / PAC Bulletin 29 24 e A smaller percentage of mothers received early prenatal care in 1986 than in 1980. The percentage of black infants born to mothers who received no prenatal care or care that began only during the last three months of pregnancy rose by 20 percent between 1980 and 1986. i During the 1980's there was no improvement in the percentage of babies born at low birthweight. To the extent that the infant mortality rate declined at all during this period, the improve- ment can be attributed not to improved health status but to the ability to save small and unhealthy babies. The inadequacy of Bush's response to this crisis goes beyond the failure to fulfill his promises or to adequately address the health needs of children and pregnant women. The real failing is his silence in the face of the large and increasing numbers of people of all ages and conditions who lack needed health care. Instead, he has focused on a population for whom Whereas Dukakis tried to avoid the budgetary implications of a national health program, Bush avoids the issue altogether. remedies are relatively inexpensive as well as politi- cally palatable and expedient. Addressing the more generalized health care problem is a more complex and costly task. Whereas Dukakis tried to avoid the budgetary implications of a national health program by having health insurance financed by employers, Bush avoids the issue altogether. Hel and Phyl is 30 Health / PAC Bulletin Spring 1989 Vital Signs Spring 1989 Disaster for the NHS British social scientists and econ- omists have always been fascinat- ed by America's tradition of large- scale experimentation, especially in health care. The work of the Rand Corporation - and the bud- gets of the Commonwealth Fund and the Robert Wood Johnson Foundation command awe and respect. In contrast, the British National Health Service (NHS) seems stuck in a bygone age. Each minute change is hotly debated. In Thatcher's Britain, the NHS remained the socialist holy cow until now. The NHS is about to undergo an economic and social experiment whose vastness of scale would make any American research plan- ner green with envy particularly - since the ideas impelling the change are American. In January, Prime Minister Margaret Thatcher announced sweeping changes for the NHS. Her document, " Working for Patients, " had its origins in a slim book Reflections on the Manage- ment of the NHS, by the Stanford University health economist Alain Enthoven (see " HMO's Come to Britain, " Spring 1988), the origina- tor of the concept of provider mar- kets. The crux of the approach is to split NHS management in two- hospital managers and medical care purchasers - with local health authorities purchasing medical care from the hospital that will sell it the cheapest. The plan is entirely untried, and, in Enthoven's favor, he suggested it first be attempted on an experimental basis. This wasn't good enough for Thatcher, who decided that the " provider market " should be applied in one fell swoop. There's more to the approach than markets, though. Health authorities are told to be more " businesslike, " without one jot of local accountability. Moreover, hospitals can " opt out " of NHS control, essentially reverting to their status as voluntary hospitals. The NHS will encourage them to work more closely with the private sector, for example, through joint ventures for site development and shared services. From now on, just like in America, accountants will have nearly the status of physi- cians. The proposals completely ignore the needs of the elderly (except for financial encouragement to seek out private services), disabled peo- ple, the mentally ill, and the chron- ically sick. The medical profession is in an uproar, with many physi- cians threatening to resign. When managers ask for advice on how all this will work, they are told to make it up as they go along. Even British health economists who have applauded these ideas have denounced the two year - timetable as ludicrous. A cynic might say that the gov- ernment doesn't care if the propos- als work or not, since part of the objective is to encourage demand for private medicine. When the plans were announced, the share values of American Medical Inter- national, the chief private sector operator, rocketed. The Tory government knows that the plans are hurting its elec- toral appeal, but it reasons that, with three terms in office, it has nothing to lose and Labour is still behind in the polls. -Geoff Rayner Rescuing Who? Operation Rescue, a growing, militant organization within the abortion anti - movement, has been garnering major media coverage by blockading abortion clinics and likening its crusade to the civil rights struggles of the 1960's. While it bills itself as a grass roots - organization that seeks to shape public opinion through nonviolent action, pro choice - activists report that " rescue " tactics involve physi- cally harassing women, and invading and disrupting family planning clinics. The organization's literature explains its mission this way: " When the nation sees hundreds and hundreds of people kneeling and sitting around a death camp, possibly risking arrest for these Health / PAC Bulletin 31 children, they will begin to take seriously our claims that abortion is murder. " In New York City, protesters recently entered a clinic by posing as patients and, accord- ing to Planned Parenthood, " chained themselves by their necks to furniture with heavy metal bicy- cle locks. " Operation Rescue is led by a lay evangelical preacher named Randall Terry, who freely quotes Martin Luther King, Jr., and urges anti abortion - demonstrators to get arrested blocking " abortuaries. " " When pro lifers - are jailed, " Terry has told reporters, " it forces the community to reconsider child- killing. It gives credibility to our rhetoric. " Rescue members say that they succeed in dissuading 20 per- cent of the women they confront from having abortions, a claim pro choice - advocates dismiss as pure nonsense. More than 12,000 demonstrators have been arrested in " rescue " operations at over 130 protests in recent months. Rescuers attempt to stop women not only from receiving abortions but from obtaining contraception and family planning counseling as well. Through carefully orchestrated protests, Terry and a small group of mostly white, fundamentalist male leaders have succeeded in making their demonstrations a fre- quent subject of the six o'clock news. " Operation Rescue has happened ee, as | RIGHTS f - DON'T MONKEY MONKEY WITH MY RIGHTS +s Visuals Operation Rescue demonstrator outside one of Planned Parent- hood's New York City clinics. / StoneImpact Thou Thou 5 ae Shalt Not Kill Kill. - rn Les 32 Health / PAC Bulletin Spring 1989 in the context of what the anti- choice people see as their greatest hope, " says Kate Michelman of the National Abortion Rights Action League (NARAL). That hope is to tip national opinion to overturn Roe v. Wade. Backed by supporters such as Cardinal John O'Connor and the Reverend Jerry Falwell, the rescue movement attempts to present its adherents as courageous and altru- istic men and women willing to brave arrest in an effort to " protect the lives of the unborn. " They have even gone so far as to compare their " mission " to the civil rights movement, angering civil rights leaders who have issued a formal statement denouncing such a dis- tortion of civil rights ideology. -Joe Gordon and Caren Teitelbaum Ridgeway on the Right James Ridgeway, political writer for the Village Voice, discussed the threat from both the new right and far right at a March 6th Health / PAC forum in Manhattan. Ridge- way warned that the greatest threat comes from the new right -the " Yalie Washington of George Bush because " this group has increasingly come to dominate pol- itics. The far right - the Ku Klux Klan, Neo Nazis -, evangelical preachers, etc.- " is played off of the new right, " Ridgeway said. That is, the new right attempts to contrast itself to extremist mem- bers of the far right, such as the racist Republican David Duke, in order to appear more moderate and to draw voters away from the Democratic party. When asked how health progressives can best confront these dangerous forces from the right, Ridgeway suggest- ed inviting prominent members of the new right to debate health and social policy issues before large audiences. " Get a sense of who these people really are and then you'll know how to deal with them, " he said. Y' -Caren Teitelbaum What's Happening to Health Care? The Health / PAC Bulletin shows you. No one else offers independent analysis of health policy issues from prenatal care to hospices for the dying; covers medical carelessness for women and on the - - job poisoning; offers incisive international reports and lively briefs on domestic health developments; and stays on top of the changing trends that are transforming the health care industry. Yes, I want to become a member of the Health Policy Advisory Center and receive the Health / PAC Bulletin. Y' Individuals $ 35.00 Y' Institutions $ 45 OE 2 years $ 70 0 Students / low income $ 22.50 Name Address City State Zip Charge: 0 Visa O) MasterCard No. Exp. Date Signature Send your check or money order to Health / PAC Bulletin, 17 Murray New St., York, N.Y. 10007 Spring 1989 Health / PAC Bulletin 33 " Toward Solomon's Mountain " The poems presented here are from the remarkable book, Toward Solomon's Mountain: The Exper- ience of Disability in Poetry, edited by Joseph L. Baird and Deborah S. Workman and published by Temple University Press. Thirty - five poets write of their experiences of living with disability and, in the case of a handful of contributors, living with disabled children, friends, partners. Without sen- timentality, and in the beautifully compressed lan- guage of verse, they tell us what it's like moving through a barrier - laden culture in which bodily loss or physical difference is avoided, scorned, or met with unctuousness. As the editors point out, " A decade ago this anthology would have been impos- sible; two decades ago inconceivable. " The advances made by the disability movement have generated radical changes in legal rights, opportunities for jobs and learning, and " most notably, modes of percep- tion, " write Baird and Workman. Among the fruits of these gains are the liberated voices of writers who speak of their lives as they wish rather than as others might expect them to. -Joe Gordon At Nuclear Medicine Waiting Room They have met here before: five old women and a man who arrives feebly on the arm of his daughter. One wears accumulating baldness with a yellow scarf; one smokes incessantly; one sits apart an Indian woman in purple, face stoic but eyes alert. They are joking, asking after common things - cats and the weather- their church - toned voices separate from reception efficiency of typewriters, personnel. I wait for a diagnostic scan and wonder if they scheduled these elderly together- an exclusive social club. A nurse comes in, waits for a pause in conversation. Then, her hand on a shoulder like a blessing, says " your turn, " lightly as a hairdresser might. There is silence until they have gone. Sanctum I am led through heavy doors. Across the room, a woman in a hospital gown sits high on a table, white hair radiating from her head in a baroque halo. She stares into space, her feet jerking rhythmically, and will not look at me. Placed in a curtained cubicle, I wait. I witness for the ritual I have intruded upon - the low voices, whirs and clicks removed from me by design of a grey striped - curtain. Later, I am brought in my gown by attendants in baby - blue lead aprons to the center of the room. There, mounted in massive stainless steel, the eye of a god. -Dixie -Dixie Partridge I Know, You'd Rather Be Dead Hallway whispers still echo long after the pain was drugged off and locked away in my mental stairwell. I've heard your mezzanine words fizz from my own mouth, spilling out like warm numbing beer. But death speaks a hot humid language that forces the suck of air from a stone. You see me happy and loved like a birthday puppy, yet you wonder if it's a frothy mask; mumming the screech of depression. You must think me a fortress to defend such a veil, or see me more a carcass hanging fish dumb - on some hook. My muscles are atrophying, and I gag on every bent walker I ever swaggered by or thought to banter. But Death?! Do you imagine me gaily wheeling into a square silk lined - box, needing but two pallbearers? Or do you know they'd lay me out the same as you or your brother George- Somehow dislocated from my round spoked legs? -Edward L. Hooper 34 Health / PAC Bulletin Spring 1989 Clinics When I am four a crippled hospital Peels me out of my parents'arms To make me better. I wring my mother's neck For safety, knowing this is not What they said would happen, that they Are as unnerved as I am to see Their mangled only son stripped from their love Into the cracking - plaster bowels Of this place, into a row of endless cages Where children no stronger than their parents ' Worst fears lie writhing, waiting for the legs The doctors have promised. I have made it Perfectly clear ever since breakfast That I want to stop there again on the long Way back, at that same roadside place Where I slurped up my hungry hot oats this morning And they said we'd be sure to, but now They just stand there growing smaller as some White headed - woman with her glasses on a chain Around her neck takes me down the long green Hallway frowning, and they are still waving goodbye As we turn the ugly corner and disappear, and what If I never get my legs and they forget me? -Michael -Michael Bachstein Reflections Like an army of locusts I hear a thin buzzing that floats out of my chest I am the crest of the shadow the center cast upon mirrors the mocking face years have stained have withered images of a body a feather blown by odd winds of shine of shade images of a soul the moon's hub unhinged from the center rolls berserk in the end everything runs out runs under the wheels a bandage unwinding on the center line when I most want the shadow the infinite woman who sleeps in my veins to rise lightfooting over long summer walks, my ribs clang like a metal signpost at the edge of town and the dark I cannot shut out crawls with me under the quilt: I see all moving to death eyes in the mirror glow dimmer than they were drinking against me thirstily -Constance -Constance E. Studer -2 -_ -_ -_ se Heland d Phylis Spring 1989 Health / PAC Bulletin 35 Inside: An interview with anti toxics - leader Lois Gibbs page 17 Bush on child health care page 27 Wrenching power from the poisoners page 26 Poems by, for, and about the disabled page 34 Health Policy Advisory Center 17 Murray Street New York, New York 10007 12920 12920 12920 F 8711 LEN RODBERG JOANNE LUKOMNIK LUKOMNIK LUKOMNIK LUKOMNIK 404 RIV DR NY NY 10025 2nd Class Postage Paid at New York, N.Y. NOTE TO SUBSCRIBERS: If your mailing label says 8709, your subscription expires with this issue.