Editor: Irving Kenneth Zola Managing Editor: Janet Boudreau Co-Editor for this issue: Jean Campbell, Ph.D., Director of Research and Quality Assurance, Department of - Mental Health and Mental Retardation, Augusta, Maine.

Issue Theme: Rethinking Mental Illness from the Inside Out

This Spring 19'13 DSQ pusha the .envelope of our undemanding of mental illness, with implications for research· and policy. lean Campbell has assembled a wide range ofvoices who appear not only as expected in the M'u:lsection but throughout ourpages._ Summer 19'}3 (deadline lune 1) will focus on genetics with Adrienne Asch as co-editor (School ofSocial W~ Boston Univenity, 264 Bay State Road, lJoston, MA 02115)., Fall 1993 (deadline September 1) will emphasize •ChiJdren and Disability Issues• and Rosalyn Daning will co--ediJ (Beginnings, 406 Main Stn!et, Suite 201, Johnstown, PA 15901. TeL 814-539-1919). 1994 will begin as usual with a generic i&sue (deadline December 1, 19'}3). The Spring i.uue - (deadline: March 1) will deal with AIDS. Summer and Fall are yet to be finalized but mggestions include •DeaJh, Dying, Euthanasia, As.risted Suicide• and two old favorites Media and comparative. Again_ we wish to acknowledge the help of the Dole Foundation in defraying 1992 costs associated with student memberships,. exchange&, free siibsaiptions, and the production of audio lape3. Wllh this issue we will begin to implement reader- suggestions for a Table of Contents. It will appear as is common with many journals on the lastpage. Let us know whether this helps and provides •fJident. detail

for Truth in Psychiatry, the national organization of electroshock survivors, died ·suddenly on

November 151 1992 of a heart attack. She had been in good health and was active up until the very end of her life. Her husband of some 30 This issue's Focus acknowledges the deaths years, Pierce, survives her. and celebrates the lives of two disability rights I can hardly do justice to Marilyn's leaders, Marilyn Rice and Wade Blank. productive and extraordinary life. She ·had an illustrious career as a high level government •A Voice For Truth In Psychiatry' economist before she turned her considerable By Linda Andre energies and exacting mind to organizing electroshock survivors. She certainly never would Marilyn Rice, founder of the Committee have chosen to give up the well-paid career she loved to do the unpaid, often thankless work of Congresspeople, bureaucrats, and policymakers on electroshock advocacy, and she suffered great all sides of the fence ended up talking to Marilyn. anguish when it became clear she had no choice. It was common for a conversation with her to (If you haven't read it, look up the excellent article begin, "I got a call today from ... " and I never knew about Marilyn---given the pseudonym Natalie whether it would be Geraldo Rivera or a U.S. ·Parker---titled "As Empty As Eve" in the New Senator, or someone in between. Yorker magazine in 1974. It became an instant Marilyn was a private person, only rarely classic and is still widely quoted.. However, Marilyn appearing on TV herself .or showing up at •. would have w~ted me to make clear that the conferences. But nearly all her time and a good cheery ending· was a fiction dreamed up by the deal of her fixed retirement income went into the author.) She never considered the option of just CTIP. She was always either at her typewriter ( an living a quiet retired life after being shocked at the ancient electric model--- she disdained computers), age of 48, keeping silent about what had happened on the telephone, at the library, or at the copy to her.· Marilyn was just not that kind· of person, shop. She especially liked working and studying f~ for which we can all be grateful. into the night and I enjoyed being able to call her She was completely, wonderfully lacking at 3 A.M. when. I needed the answer to some that interiorized stigma or sense of inferiority burning question. Her home was always open to which keeps many former patients from speaking anyone who wanted to meet her in person. out. After all, she had done nothing wrong, only One of the most telling· things about trusted in a doctor! Most importantly, Marilyn Marilyn was that she always referred to the CTIP never doubted the truth of her own experience. as a "club". Unlike many of us in the ex-patient She later described herself as speaking and · movement, Marilyn did not come to this work writing about shock to "anyone who would listen", from a background of political organizing. In fact, from former co-workers to internationally though this may sound paradoxical, Marilyn was renowned scientists. She began to refer to her one of the least political persons I've ever known. voluminous correspondences as the "Truth in What she was, in the most basic sense, was a good Psychiatry" letters when she realized that citizen. Before shock, she played by the rules, respondents unfailingly fell into one of two always worked hard and did her best, made a good categories: survivors who described permanent living working for the government, and had no memory loss, and professionals who either denied reason to suspect that the same government did such memory loss or tried to explain it away. not have her best interests at heart. After shock, The "Truth in Psychiatry" network of the when she uncovered the FDA's role in the coverup mid-70's· was the beginning of the CTIP network of the harmful effects of electro- convulsive which exists today. Of course, when the Committee therapy (Ecr), she did what any good citizen . for Truth in Psychiatry was officially formed with should do: tried to hold government responsible 17 founding members in 1984, only survivors could for what it is supposed to do---in this case protect join. As she later wrote, "The possibility of its citizens from harm from medical devices. For effectiveness on the part of CTIP .lay in its her efforts, shock's proponents regularly portrayed members ability to fire a new kind of ammunition - her as a wild radical, and with a good deal of -- not research studies, not some doctor's opinion, success in making this characterization stick, not anecdotes about individual experiences, but the especially within the family organization, NAMI. authority of shock patients speaking in unison But anyone who knew Marilyn---five-foot-tall, about the common denominators of their mutual white-haired, mild-mannered Marilyn---could only experience." laugh at this portrayal. Although Marilyn often expressed regret . She had ample reasons to be frustrated, that the CTIP had not grown as rapidly as she had like when the thirteenth news article in a row hoped, today we have over 400 members. That's a edited any mention of CTIP out of its finished 25-fold increase~ How many other organizations product, but she was never bitter, not even over can say that? Marilyn had reason to be proud. the devastating loss of her ECT lawsuit, the first In the years following the CTIP, Marilyn lawsuit of its kind ever (1976). Marilyn was wise established an international reputation as an expert enough to loo)c at the longer picture. She may on shock. Print and TV reporters, talk show hosts, · have lost her suit, but dozens and dozens of ECT

2 lawsuits followed hers. in 1984, it now numbers around 500. Survivors The steady, low key accomplishments of may join by endorsing the CTIP informed consent CTIP were sometimes hard to documen,t. Marilyn form, available from P.O. Box 1214, New York, put it best in a letter to me a couple of years ago, N.Y.1000~, or phone (212) 473-4786. CTIP's goal describing our input into a new consent form: is true informed consent, especially "Sometimes it looks like ·we're not getting acknowledgment of permanent memory loss, for anywhere, but in reality we are." every patient. Supporters who have not received . Only a month after her death,. I attended electroshock may also .join in our efforts and a lecture by Dr. M~ Fink, her chief adversary for receive our newsletter. We are a totally 20 years. Max made numerous references to 'independent, "100% grassroots (read: broke) "Marilyn Rice and her gro.up" and our effects on organization. Donations are welcomed. the electroshock industry~ Most of it was nonsense ·and paranoia. Marilyn would have had a good The Disability Rights Movement laugh. But one thing's for sure: CTIP is a By Tari Susan Hartman_ permanent force to be reckoned with in all matters having to do with ECT. The disability rights movement mourns the Even so, Marilyn's greatest legacy may be tragic death of Reverend Wade Blank (age 52), the impact she had on the lives of so many shock founder of Atlantis Community/ADAPT. While survivors. She helped tum so many lives around in vacationing with wife Molly and their two children a positive way.. I'm a typical example. I honestly· in Todos Santos, Mexico, their eight year old son don't know where I would be today if I hadn't Lincoln got caught in an undertow. Wade swam known Marilyn. I can't_even remember how I first out to save him and they both drowned on came to contact her---1 was still severely organic at February 15, 1993. Wade is survived by his wife the time---but she told me it was just a few months Molly and two daughters Heather·(22) and Caitlin after my shocks, when I was· still reeling from the (5). loss of my memory, my career, and my friends. Ironically, Wade died in the same way he The exact details of our first conversation and· lived - swimming into the face of hostile (political) meeting have gone to her grave, but I know what undercurrents, and giving of his life to help others her message was: You are not alone. Those four help another fight for theirs. little words make a world of difference, between Wade was born December 4, 1940 in . despairingly believing you'r~ crazy, and finding the Pittsburgh, PA. After attending an all white high . strength to fight back. I have said those words school, he travelled with Dr. Martin Luther. King . myself now so often, every time a survivor says "I to Selma on a, dare by a Black college roommate . thought I was the only one." Once there, he realized the deep oppression that Nearly ten years after-my shocks, I know exists and is perpetuated by our "civilized" society. a great deal about recovery from ECT. But the He became pastor of a church in Kent, Ohio which most important thing I know is: it always begins by became the underground meeting place for the finding other survivors. This, as much as our good Students for a Democratic Society (SOS). After . work at the FDA, is what the CTIP is all about. the Kent State killings, he went back to These are Marilyn's legacies, which I in her place McCormick Theology Seminary, got a masters and all of us will help carry on as long as there is degree and was ordained as a Presbyterian a shock machine in operation. · minister. He moved to Denver and began working LINDA ANDRE succeeds Marilyn Rice as the at a nursing home. Director of the Committee for Truth in Psychiatry. With years of civil rights, farmers' rights, She survived 15 electroshocks in 1984. A former . war on poverty and anti-war organizing, he writer and art critic, she has been active in the delivered Martin Luther King's empowerment psychiatric survivors movement for many years and dream of freedom directly to the doorsteps of the also serves on the Board of Directors of NAPS, disability community. That spark ignited the torch the National Alliance of Psychiatric Survivors. .and· added significant fuel to the disa}?ility right's .. THE COMMITTEE FOR TRUTH IN movement which was about to cross a threshold PSYCHIATRY is the national· organization of that would forever change the course of history. persons who have received electroshock. Founded In 1971, .. whil~ on staff at Heritage House, ... 3 a Denver-based nursing home, he tried to make right" echoed in the halls of Congress, as changes by wotking within the system (the worst politicians became increasingly aware that ADAPT advice his parents ever gave him) to make life and the disability rights movement fully expected more dignified for young disabled residents. He ADA to be passed as landmark civil rights soon realized that their dignity and the profit- legislature. ADAPT organized "The Wheels of driven nursing. home industry were on a collision Justice" march in March of 1990. It was a call to course! He lost his job fighting for the rights of action that galvanized the disability rights young disabled nursing home residents. ·The epic movement to demand swift passage of ADA with · was chronicled in a recent ABC-1V movie .with no weakening amendments. Over 1,000 disability Fred Savage entitled "When You ~emember Me." rights activists from across the nation joined forces In 1974, Wade founded the Atlantis with ADAPT to demonstrate .to the world that Community - the model for community-based and they were ·to be taken seriously. consumer controlled independent living out of On the second anniversary of ADA (July institutions. Named after the lost continent of 26, 1992), the city of Denver and its Regional those. who are easily forgotten and dismissed, the Transit District commemorated that historic event first residents of Atlantis Community were those by dedicating a plaque to Atlantis/ADAPT and the youths who were incarcerated in Heritage Hou~, "gang of nineteen." Wade was a humble man, and from which Wade was fired, but never forgot them. while he i:efused to have his name engraved on the Year later. Wade and attorney John plaque, his silent. tears at the dedication ceremony Holland would mastermind a $3.2 million law suit revealed to himself and those around him that he against Heritage· House nursing ho~e · for had indeed left his mark forever etched in the obstruction of justice. The case went all the way to foundation of our civil rights movement. the U.S. ·Supreme Court. Now, many of those In 1990, when it became clear that original nursing home residents are raising their ADAPT had successfully led and won the fight for own families in homes they now own. accessible public· transportation to be required by In 1978, Wade and Atlantis realized that ADA, Wade and ADAPT's national leaders if people ·with disabilities were . to truly live convened to plot their next course of action. independently, they would need, and should have "ADAPT" transformed its missien and became a right to, accessible public transportation. On "American Disabled for Attendant Programs July 3-6, 1978, a "gang of nineteen" disabled Today." activists and Wade held their first inaccessible bus Together, ADAPT and Wade returned to hostage in the Denver intersection of .Broadway the· scene of society's most heinous crime - the and Colfax. Late that night, Wade was surprised incarceration and warehousing of· 1.6 million when he was handed a donut and cup of coffee by disabled men, women and children. These disabled U.S. Congresswoman Pat Schroeder. Thus, Americans had committed no crime, yet were and Atlantis gave birth to ADAPT (American Disabled still are, being interned against their will, in nursing fo.- Accessible Public Transit). ADAPT was the homes, state school' and other institutions. Left to nation's first direct-action grass-roots movement of · be forgotten while the nursing home lobby, disabled activists and had mushroomed in over 30 physicians and a cast of thousands continue to get states, Sweden and England. rich off of robbing our people of their fundamental Like the freedom riders · of the 60s, civil, human and inalienable rights to life, liberty ADAPT's struggle for accessible public transit and that pursuit of happiness. became a national battle cry of the 80s. Over the 'Most of us are spectators sitting on the course of eight years of bi-annual national sidelines of life, learning history from books. demonstrations througho:ut the country, hundreds Wade, a passionate Oeveland Browns' fan, was an of ADAPT activists and their families were active participant over three decades of political arrested for their beliefs and commitments to organizing, teaching others how to create and ensure civil rights for all disabled citizens. 12 years record their own destiny. At the disability after the first bus was seized, wheelchair lifts on community's most dramatic arc, there came a buses were mandated by the· Americans with brilliant strategist. .__ Disabilities Act (ADA). ._ This humble man named Wade, was never ADAPT's street chant "access is a civil too busy to roll up his sleeves and· assist someone

4 with attendant services, push or repair_their chair, Health Services Case Management· Conference, ·· or drive a van.· He stood up for what he pelieved Room 718, 3600 Market Street, Philadelphia, PA in and expected others to do the same. In his 19104. Write: Jean Campbell, Ph.D., The Well- pursuit to free. others from the · chains of Being Programs, Inc., 17 Maxwell Rd., Chapel Hill, oppression, he was arrested 15 times and proud of NC 27516. Call 215-662-7112. it! Several. weeks ago the Atlantis/ADAPT story· . was officially accepted into the National Arcµives. April 25-27, Electronically monitored Wade was a loving husband, daddy, friend, home confinement research seµiinar and organizer and leader. He valued and encouraged conference, Simon Fraser University at Harbour the unique contributions that each of us· had to ·Centre~ Canada. For more -uetails and registration - give to ourselves, each other and the world around ' information contact EMHC Conference, Public us. We honor his contribution, value his· Policy Programs, Continuing Studies, Simon Fraser . friendship, and grieve. the loss of our beloved University, Burnaby BC, V5A 1S6, (604) 291-3792, friend and colleague. Wade was one of the few FAX (604) 291-3851. non-disabled allies_ of the disability rights movement who understood the politics of April 26, Workshop on Practical Coping oppression. At times through the years, his and Empowerment Skills for People with leadership role was questioned, but he never lost Psychiatric Disability at John Hancock Conference sight of the vision, nor lacked support of those h.e Center, 40 Trinity Place, Boston, MA 02116. was close with. Contact: Bruce · Lynch/LS-1, Workshop Reverend Wade Blank found the lost Coordinator, Center for Psychiatric Rehabilitation, community of Atlantis. Now it is up to those of us 730 Commonwealth Ave.,Boston, MA _02215~ in the disability·rights movement. We must never forget ... his spirit will live on forever. May 12-14, The President's Committee ori Wade's biggest regret was that "people Employment of People with Disabilities· 1993 ·come into your life and go out of yo.ut life and that Annual Conference, "ADA: Gateway to we can't maintain constant friendship with Opportunity" at the Cervantes Convention Center everybody." Our friend Wade will be remembered in St. Louis Missouri. Registration fee will be. $70 · and cherished for this, and future generations to in advance or $80 on-site. For registration or come. conference information, contact: Randee Chafldn, In honor of Reverend'Wade Blarik a trust Conference Manager, President's Committee· on fund is being established in his memory. Checks Employment of People with Disabilities, 1331 F should be made payable to Atlantis/ADAPT and Street, N.W~ Washington, D.C. 20004, FAX: (202) mailed to Atlantis/ADAPT; c/o Evan Kemp; 2500 376-6868, Phone: (202) 376-6200, TID: (202) 376- Q Street, NW; #121; Washington, DC 20007. 6205. A memorial service in honor of Wade Blank will be held on Sunday, May 9 at the Lincoln May 19-22, Studying Human Lived . Memorial in Washington, DC. May 9 was to be Experience: Symbolic .Interaction and and still is, the· first three days of ADAPT's bi- Ethnographic Research '93. University of annual national action to liberate 1.6 million Waterloo, Waterloo, Ontario, Canada. The '93 disabled citizens from nursing homes. (Tari Susan Program will be largely organized· around the Hartman does media relations work for ADAPf following themes: .Acquiring Perspectives; and is the founder of Bin Sof Communications - Achieving Identities . and Reputations; Being · Tel: 213-874-5860). Involved; Doing Activity (Performing Activity, · Pursuing Cooperation, Making Commitments, Coordinating activities, Negotiating Organizational Routines); Experiencing Relationships.. Contact Scott Grills, Sociology, · Augustana University College, Camrose, Alberta T4V 2R3, (403) 679- 1531, Fax ( 403) 679-1129, E-Mail [email protected]~ April 21-24, The Second National Mental

5 May 20-23, · 2nd World Conference on ADA from Vision to Reality with Technology at Injury Control at Atlanta Marriott Marquis in Mirage Hotel, Las Vegas, Nevada. Contact: Atlanta, GA. · Contact: Association for · the RESNA, Suite 700, 1101 Connecticut Ave., NW, Advancement of Automotive Medicine, 2340 Des Washington, DC 20036, Telephone: (202) 857- Plaines Ave., Suite 106, Des Plaines, IL 60018 1199. USA. Tel. 1-708-390-8927, FAX: 1-708-390-9962. June 13, The Canadian Rehabilitation Council for the Disabled (CRCD) Annual General May 21-24, New York Academy of Meeting, with one-day conference (June 11) at the " Sciences, Research Triangle Park, NC. ·Theme: Coast Terrace Inn, Edmonton; Alberta. Inquiries: "Human Reproductive Ecology: Interactions of Michelle Hoo, CRCD, 45 Sheppard Avenue east, Environment, Fertility. and Behavior." Contact: Suite 801, Toronto, Ontario M2N SW9. Phone: Kenneth Campbell, Dept~ of Biology, U (416) 250-7490. Fax: (416) 229-1371. Massachusetts, Boston, MA 02125-3393. June 14-18, HP&E Center for Health May 21-24, The New York Academy of Policy & Ethics presents the Third Institute on Sciences, Sheraton Imperial Hotel and Convention Ethics and Health Care. Contact: Sandra Nichols, Center, Research Triangle Park, NC. Theme: Center for Health Policy & Ethics, Creighton Human Reproductive Ecology: Interactions of University, 2500 California Plaza, Omaha, NE Environment, Fertility and Behavior. Contact: 68178. Conference Department, New York Academy of Science, 2 East 63rd Street, New York, NY 10021, June 16-19, The Fourth Biennial (212) 838-0230, FAX (212) 838-5640. Conference on Community Research & Action at The College of William and Mary in Williamsburg, May 27-30, Law and Society Association VA. This conference, organized by the Society for 1993 Annual Meeting, .Chicago, IL. Theme: Community Research and Action (Division 27 of "Culture and Inequality." Contact: Executive the American Psychological Association) is ·an Offices, Law and Society Association, Hampshire excellent outlet for self-help research and action House, Univers~ty of Massachusetts, Amherst, MA projects. This Conference has traditionally had a 01003; (413) 545-4617; FAX: (413) 545-1640; E- format that actively encouraged interaction MAIL: [email protected]. between researchers, those involved in action projects and consumers in a casual and accepting May 30-June 2; Children's Health Care in atmosphere. Contact: Greg Meissen, Wichita State Transition: Opportunities for . Making· a Univ., Dept. of Psychology, Wichita, KS 67208, Difference, the 28th annual conference in Chjcago (316) 689-3170, MEISSEN@TWSUVM or Lou Marriott Downtown, Chicago, Illinois. Inquiries: Medvene, Wichita State Univ. Dept. of Psychology, Elena Widder, ACCH Conference Office; 7910 Wichita, KS 67208, . (316). 689-3171, Woodmont Avenue, Suite 300, Bethesda, MD .MEDVENE@TWSUVM. 20814-3015. Phone: (301) 654-1205. June 17-19, The Sixth Annual Convention June 9-12, The Vermont Conference on ofthe Society for Disability Studies at the Embassy the Primary Prevention of Psychopathology, jointly Suites Hotel in Seattle, Washington. SOS is a sponsored ·by the National Institute of Mental nonprofit scientific an_d educational organization· Health and our Vermont Group announces a established to promote interdisciplinary research conference on Promoting Successful and on humanistic and social scientific aspects of Productive Aging, Radisson Hotel, Burlington, disability· and chronic illness. Three full days of Vermont. Contact: Kimberly Ryan-Finn, VCPPP, sessions are planned covering health· care reform, John Dewey Hall, University of Vermont, personal assistance services, children, civil rights, Burlington, Vermont 05405; Phone: (802) 656- teaching disability studies, disability policy studies, 4069, FAX: (802) 656-8783. . consumers and professionals, politics and policy, disability statistics, self-determination and June 12-17, RESNA '93 Engineering the independence, women's issues, National Archives,

6 mass media, film, performing arts, novels, attitudes, (202) 833-0075. peer and family support, chronic illness, AIDS, participatory developmental disabilities, and the June 20-26, International Conference of disability movement. Registration material is -. Children and HIV/AIDs: Medical, Ethical and available from: Marci Catanzaro, Physiological Legal Issues. International Institute for the ·- Nursing, SM-28, University of Washington, Seattle, Sociology of Law; Onate, Guipuzcoa·(near Bilbao- WA 98195, (206) 685-3222, San Sebastian), Spain. Contact: Professor Emilio [email protected]. (For more details see Viano, · School of Public Affairs/DJLS, The The Society Pages of this issue of DSQ) American University, WashingtonD.C.20016-8043; phone (202) 885.;.2953; FAX (202) 885-1292 or June 18, Disability, Abuse and Personal (202) · 885-2353; Bitnet: EVIANO@AUVM; Rights, a project of Spectrum Institute presents: Internet: [email protected]. The Sixth Annual National Conference on Abuse of Persons with Disabilities, The Challenge of June 25-26, Ninth National Forum on Changing Times: Innovative Approaches to Abuse Research · in Aging, Nebraska Center for Issues. A Conference for Professionals and Continuing Education, Lincoln, Nebraska Parents Concerned with Abuse and Disability. Special Focus on Rural Aging. Contact Dr. FEES: $70 early registration, $85 after May 30. Barbara Emil, (402) 472-2844/ Fax (402) 472-8207. Make checks payable to: Spectrum · Institute. PI.ACE: Burbank Airport -Hilton Hotel, 2500 June 25-27, Creating New Partnerships: Hollywood Way, Burbank, CA 91505. In The Rehabilitation Team 70th Annual Meeting of California: (800) 643-7400, Outside California: the American Congress of Rehabilitation Medicine. (800) 468-3576, Local Number: (818) 843-6000. Sponsor: American Congress of Rehabilitation Rate: $67 /night. All rooms accessible. Medicine. Location: Hyatt Regency Denver, Denver CO. Contact: ACRM 1993 Annual June 19, International Sociological Meeting, 5700 Old. Orchard Road, First Floor, Association Sociology of Mental Health Working Skokie, IL 60077-1057, (708) 966-0095. Group Interim Conference, Center for Human Evolution Studies, Rome. Theme: "Work and July 26-30, Cultural Diversity, "Working Mental Health." Papers include work (including Together Differently, in Psychosocial the sotjal stratification of occupations, workplace Rehabilitation", New Orleans, LA, Hyatt Regency organization or socialization, or. the social relations Hotel. The 18th Annual Conference of the of production) to mental health (including International Association of Psychosocial assessments of life or work satisfaction, well-being, Rehabilitation Services. Contact: IAPSRS, 10025 stress, or mental disorder). Contact: Brent M. Governor Warfield Parkway #301, Columbia, Shea, Program Chair, Department ofSociology and Maryland 21044-3357, (410)730-7190. Anthropology, Sweet Briar College, Sweet Briar, · VA 24595-0001; FAX: (804) 381-6173. July 28-August 5, IUAES 13th Congress, Mexico· City. Theme: Cultural and Biological June 20, The Second International Dimensions of Global Change. . Contact Linda Symposium on Youth and Disability, in Jerusalem, Manzanilla, Instituto de Investigaciones Israel, by the Israel Society for Adolescent Health Antropologicas, UNAM .;. Ciudad Universitaria, Israel Rehabilitation Society. Inquiries: Ortra Circuito Exterior, 04510 Mexico DF MEXICO; (5) Ltd., 2 Kaufman Street, P.O. Box 50432, Tel Aviv, 5-48-78-28 or 5-50-53-13~ 61500, Israel. Phone: 972-3-664825. Fax: 972-3- 660952. .Telex: 361142 ORTRL IL. August 1-8, Creativity and Madness 0 Psychological Studies of Art and Artists. Santa Fe, June 20-23,· 20th Annual Conference of NM. Contact The American 'Institute of Medical · the National Council for International Health, Education, 2625 W. Alameda Ave., Suite 504, Arlington, VA. Contact: NCIH Conference Burbank, CA 91505. Department, 1701 K Street NW, Suite 600, Washington, DC 20006; (202) 833.;.5903; FAX: August 13-17, American Sociological

7 Association 1993 Annual Meeting Student Session, realized that each country had its own sign Miami Beach FL. Session topic: "Contemporary language." I would like to add the following Issues in the Sociology of Health and Illness." information. Contact: Jim Guinn, 620 S. Center Street, Apt. 4C; Invited to present a paper on the Royal Oak, MI 48067; (313) 541-0696; FAX: (313) integration efforts of deaf people, I requested to 577-0157. American Sign Language interpreter. In response, the Vatican organizers assured that there would be August 23-27, World Federation for a plenty of interpreting services· at· the Conference Mental Health, 1993 World Congress, Chiba, although they later agreed to provide travel Japan. Theme: "Mental Health: ·Toward the 21st support for one ·of my interpreters. At the Century - Technology, Culture and Quality of Conference, Fiotenzo Cardinal Angelini graciously Life." Contact: the Secretariat for WFMH '93 admitted that his original assumption about sign Japan, c/o Congres Corporation, Namiki Bldg. 5-3, languages was wrong; As a result of the efforts by Kamiyama-cho Shibuya-ku, Tokyo· 150 JAPAN; the Italian federation of the deaf, the Vatican Phone 81-3-3468-9330; or 81-3-3466-5241; FAX: agreed to reserve a special area for about 1,500 81-3-3466-5246. deaf Italian participants (out of 6,000) so they could have a full _and unobstructed view of Italian September 9-13, The Society for Sign Language interpreting. Ms. McFadden's Behavioral Pediatrics will conduct its 11th Annual efforts helped to bring American Sign Language Scientific Meeting and Workshops at the and Gestuno (our International-Sign) interpreters Providence Marriott in Providence, Rhode Island. into the Conference for the benefit of deaf For further information and registration forms, participants from the United States, Poland, ·please contact Ms. Noreen Spota at (21S) 248- Romania and Senegal. Although I was listed as 9168. both president of the World Federation of the Deaf and a sociology professor in the program, my September 26-29, Ireland '93, World primary role during the Conference was political. Association of :Psychosocial Rehabilitation World Sincerely yours, Yerker Andersson, PhD. Professor Congress, Dublin, Ireland. Contact: Dr. Brian of Sociology, Gallaudet University, Washington, McCaffrey, President, WAPR 1993 Congress, DC 20002-3695. Agenda Conference Services, Ltd., 10 Hagan's Court, Lad Lane, Dublin 2, Ireland; Tel: 3S3-1- 618904~ FAX· 3S3-1-785047. TIIB APA CONVENTION AND COUNTER- CONVENTION Harvard Medical School 4th · annual summer seminars for mental health professionals, by Michael A. Susk~ June 4-6, July 12-August 13, and August 16-20 in the Cape ·Cod area. Contact: Harvard Medical The following essay will contrast two School, Department of Continuing Education, P.O. simultaneously held conferences--one composed of Box 825, Boston, MA 02117. professionals empowered by the mental health system, and one composed of former recipients of that· system, who are for the most part politically powerless. A conference is a microcosm, representing both a convergence of persons and a convergence of thoughts. The movement toward a unifying vision--overcoming fragmentation and isolation--is The following is an addendum to the a natural development for any movement or group. Winter 1993 DSQ. We may then discern what the guiding vision is, and by what means it is achieved: by unanimity, or In her reports on the Vatican Confe·rence by coercion and compulsion. We may ask too, what (DSQ Vol. 13, No. 1, p. 86) Kate Seelman writes is the motive force behind the vision: whether for "I was unsure of whether or not the organizers human ·liberation or for goals of profit,

8 professional enhancement and status. The presence our sign entitled "Human Rights and Psychiatry" of a ."Counter Conference" reveals not only a drew dozens of psychiatrists into conv~rsation, as human drama but .the larger political and well as a number of puzzled stares. From a philosophic struggle within the field of mental Bulgarian psychiatrist dressed in black to American health. psychiatrists across the country, many shared their In 1991, I attended the American concerns about the current biochemical Psychiatric Association .(APA) Convention in New reductionism. One psychiatrist called to our York City. There, I experienced the two worlds attention that the CTA mind operations of the meeting: the ragtag, "ugly" ex-patient groups and 195.0's have not stopped, that "black operations" the somber, grey-suited professional world of the continue under the guise of anti-cult activity~ An psychiatrist. Last year, the AP A held their annual Argentine psychiatrist described how her country, meeting at the Washington Convention Center. during the 1960's, closed state hospitals, stopped And the Counter-Convention, a collective of institutional commitment, and saw psychotherapy advocates and ex-patients~ met nearby at the flourish. With the return of dictatorship in 1976, International Youth Hostel. This year, the "ragtag the old system of coercion retumed--although army" at the IYH seemed to have grown in quality- electroshock is still banned. -better organized, more activist than consumer- I was happy to pass on copies of Cry of oriented, and more international representation the Invisible, a collection of first person· accounts including Belgium, France, and some 20 folks from from psychiatric survivors. A Hungarian Montreal. psychiatrist, who was very· concerned about "non- There were two firsts this year: For the responders,11 said it was only the book he bought at -first time the movement broke into the mainstream the convention--which I sold at half price in press. Ron Thompson, attorney advocate against exchange for a book on Neuroleptics that he had forced treatment, and member of the Board of written in Hungarian. At times humor lightened Directors of the National Association of Rights, the day. Once, when I described our booth as Protection, and Advocacy, arranged a Washington representing ex-patient groups with opinions that Post interview with reporter David Brown~ Our weren't allowed upstairs, a psychiatrist said, "That's group--about a dozen advocates--was intetviewed because the patients are upstairs." for two hours and was well represented by such There were workshops at both articulate comments as that given by physician and conferences. · I attended a Counter Conference advocate, La.ny Plumlee: "Much of what · is session on the Grof method, where by using described as mental illness is, in fact, a reasonable breathing techniques and an observer, a person is · response to everyday stress, and in any case, is encouraged to deal with traumatic experience. Next usually transient and self limited." The A-Section door, I heard a few mysterious sounds from La.ny Post article also covered our protests outside the Plumlee's workshop entitled "Recovering our convention hall. A second' article in the Post Youthful Passions," and wondered what he was included a ·report of David Oakes (one of the doing. When one workshop leader didn't show up, counter-conferences organizers) interrupting a Ron Thompson found himself drawing an press conference with shouts of "Stop· Forced impromptu crowd and offering a legal perspective Drugging!" on the advocacy movement. Ron believes that it is The second "first" was that we were of singular importance to focus on psychiatry's allowed a booth by the APA, or should I say melding of medicine · and violence--forced partially allowed. For we had been informed that treatment. He says that legal· support and public we would have a booth within the exhibit hall, but approval of this doctrine must be reversed. were later told that it was cancelled due to lack of Later that day Ron and I --using press space. We called back to say, "If space opens we're passes that the APA had granted to some in our · still available." The APA responded by giving us a group---stopped into an after-dinner talk attended table--one not in the "temple" area but in the by hundreds of psychiatrists on "The Search for a "outer court," downstairs close to the APA offices Safe and Effective Medication." The irony of this where I supposed we could be monitored. The doesn't escape us: the title implies there is neither singularity of having a space all by ourselves a safe nor effective drug, and the admission during actilally worked to our advantage. For four days the talk that more than 50% of their

9 "schizophrenic patients•i are "non.responders" was were of special interest: Dr. Peter Breggin, director much more candid than usual. We left early as the of The Center for the Study of Psychiatry arid talk continued in detail about neuro-transmitters, professor at George Mason University, spoke material we have all heard before. Dr. Nathaniel · before the ·advocacy groups. Breggin began on a Lehrman, who ~ttended both-conventions and gave personal note, describing how he was first drawn a well-received workshop. at ours, calls all this into the advocacy movement by hearing of the "molecular phrenology." (phrenology. being the "first violence initiative" where psychosurgery was doctrine that conformation of the human skin can practiced· on SO black children in Mississippi. He indicate the type and degree of "mental illness.") tied the recent riots in LA. to psychiatric injustices With Jan Kuypers, friend 'from 'Belgium, .by referring to the· "Us and Them"· mentality. I attended a talk entitled "Psychiatry and Breggin is concerned with the · "new violence Scientology." After an hour into the talk, Jan titled initiative" where inner city kids .will be targeted for his notes in capital letters: "TI-IE WAR OF THE early and possibly involuntary· treatment. CHURCHES." Indeed the characteristics of cults This approach was advocated by NIMH · .descn"bed by Professor Louis West, the.· talk's Head, Dr.·Frederick Goodwin in a presentation to ·leader, seem to apply equally well to· involuntary a room filled to capacity, with a long line formed psychiatry: isolation, special methods ofpersuasion, outside of hopefuls waiting to get in. On the other group pressure, ·information management, and hand "Fire Fred" was the most popular slogan and suspension of individual and critical judgement. most common sign waved by the protestors. The ·Perhaps the greatest revelation to me was when the arguments for denying him confirmation to his new speaker referred to the protestors outside the · office was·urged by advocates who lobbied over a convention halls as former patients, some of whom dozen C.Ongressional offices. . were still mentally ill, recruited by Scientologists to Senator Ted Kennedy spoke before the disrupt th~ conference. This shocked me, to find APA in an evening keynote address. He invoked that there was ·a disinformation campaign to his brother several times, and the spirit of Dr. discredit us, tying us to a cult and saying we're Menninger, with whom JFK met. Kennedy referred "crazy." A consumer/survivor researcher who had to the "tidal wave of human need" and the attended both conferences, called Professor West realization that for the margin,alized the 80's were to task, saying: "That's cult baiting, ~hen you "a decade of disaster". But the humanist principles describe self-help and. advocacy groups across the that Menninger espoused, including the belief that country as dupes of the Scientologists." people could go through their experiences and be ·Later that afternoon, I attended a ''weller than well," were lost. Saying he wants to workshop on "Totalitarian Psychiatry" where Czech apply the "same principles of public mental health psychiatrists reported on their experience. I was as other diseases," Kennedy gave credence to a curious to hear that the American official, who system that relies on the use of heavy drugging and gave the APA response, say he was surprised by electroshock. · the many similarities between . the Czech system What I have reported is only a small under it.s totalitarian regime and that of the. U.S. sampling of what was offered at both conferences. Again the fact that there were pickets outside the Much of my time was spent gojng to the exhibit ·convention was noted. booths upstairs, collecting literature, trying to find The meeting of the Radical Caucus saw · allies--as well as talking .to. shock machine perhaps the boldest statements made within the salesman, drug detail man, to obtain hints of what APA convention. Biological reductionism was goes on behind the scenes of hospital wards. On attacked, and .the massive influence of the no occasion did I find any first person accou~ts, pharmaceutical industry was described, including its materials that reflected . the perspective of the people who had actually been "customers" of the five billion dollars a year in promotion for drugs, 1 its millions of dollars of gifts to doctors, as well as mental health system. their financing ·in part of this very conference. One new thing last year was the drug Drug.company backed studies were found to be companies use of art in their temple~like pavilions. statistically biased in finding favorable results for One tent featured an exhibit of Outsider Art (art their drugs. from disenfranchised groups such as ex-prison The keynotes speeches at both conventions inmates, psychiatric survivors and the poor). A

10 salesman confided that one of the artists used the made it clear that the bio part of the equation was · drug produced by the company. Perhaps the irony the dominant is lost that two of the three artists that were Further, the absence of any real critique, featured, presented mannequin-like images, as well the lack of voice from its :recipients--which the as grossly distorted bodies with gauze and wire CoU;nter Conference sought to redress--raises the trappings .. question as how psychiatry's "unanimity" of vision Another company gave out a glossy is being achieved. The little advertised fact· that brochure on Van Gogh. Again the irony was los~ psychiatry ·routinely uses force, even in non- when Van Gogh was quoted as saying "I prefer emergency situations, suggest that the profession feeling sorrow to forgetting .it or becoming has made the fatal choice for extending their vision indifferent." Van Gogh referre<;i to his crisis period by compulsion. positively, as a "molting" time. Is it implied that But last year, those advocates battling for because Van Gogh suffered so and because he a more humane approach could no longer be committed suicide, that he would have been better ignored by APA· convention attendees, and were on a drug? When I asked the salesman: "But wotild openly noted for the first time. One on one and he have done his art on drugs?" he simply shrugged face ·to face, professionals had their sensibilities his shoulders. · jarred when people normally regulated to a Perhaps the most surprising use of art was subordinate status, appeared as equals. Some a holograph image of a woman within a TV set psychiatrists were reached by the effort, some even with real doll-like furniture. The woman gave a abreacted, releasing pent-up emotions that their poetic litany of her distress. To my surprise I conference did not allow. discovered that the words were excerpted from ·Historical change begins by small but Virginia Wolfs work, collaged together, significant acts. When have professionals been paraphrased, and even altered. They had confronted in their most secure setting by those permission from the estate, said the company damaged by their care? When in the history of representative, but I was greatly distressed over the medicine has it been that "patients" have organized ·use of art to . sell drugs, and further, the a conference opposing the views of their "care- manipulation of the author's text.· I wondered if givers"? Perhaps it portends a loosening of the words in the script, disease and illness were • hegemony, that will only occur when voices of the actually used by Virginia Wolf. invisibles, the politically powerless, are · heard. The last day I went to the presentation on Michael A. Susko is a free-lance editor for alternatives to hospitalization in dealing with Conservatory Press, and also works as a Housing people in crisis. David Goldblatt, from the Burch Counselor for ·the State ,of Maryland, Social house in New Hampshire, described his work using Services. He writes children stories and has a a different language--allowing experiences to . companion dog named Wojo, half Shepherd and happen with little or no medication, recognizing half Great· Dane, has an M.S. in. Counseling the "significance of inner events," and "acceptance Psychology· and is adjunct Faculty· for Essex of' suffering." There are other organizations . Community College, University of Maryland at attempting something along these lines, including College Park.) ·Crossing Place in Washington D.C. At these conferences I sensed there was a. war· going on between two cosmologies: those that reduce problems to a biological disease".'-"you can't talk to a disease"-~and those that emphasize human relationships, that injustice distorts them, and that good relationships are needed in healing. As if sensing this weak underbelly, the Deadline for Submissions is May 31, 1993. APA chose for its conference slogan this year: The 1993 Conference Comn:dttee of NARPA T "Humane Values and Biopyschosocial Integration". invites you· to submit workshop proposals for the But the· tenor of the conference with its Twelfth Annual Rights Conference to be held overwhelming number of workshops on biological November 3-6 in Newport, Rhode Island. topics, and the vast displays by the drug companies Presentations must fall under the category of one

11 of the three training tracks listed below. Topics building a research capacity in disability policy, \ other than those suggested under each category Harlan Hahn on the relationship between disability will be considered as long as they. pertain to the policy studies· and political science, Jean McGuire general category. on organizing diverse coalitions, David Pfeiffer on the history of the disability movement and Sara I. Alliances - focus is to broaden our perspective Watson on nee-liberalism and the policy and to include people with similar interests, beliefs, philosophies of the disability and women's rights and values: Gays and Lesbians, Ethnic and Racial movements. Interested authors should submit an Minorities, People with Physical Disabilities, abstract by June 1st. Those authors whose Women's Issues, Other oppressed groups. abstracts are accepted will be invited to write a paper for possible inclusion in the :t,ook. Invitation II. Protection and Advocacy - focus is to empower to submit a paper is not a guarantee that the paper people labelled mentally · ill and to improve will be included in the collection. Papers will be effectiveness ofPAIMI staff: Increase Effectiveness due September 1st. Send abstracts to Sara by PAIMI Coordinators, Advisory Watson, Berkeley Planning Associates, 1100 17th CounciVGoverning Boards, Planning and Priorities, St. NW, Suite 330, Washington, D.C. 20036. For Evaluation and Qient Satisfaction, What do more information, call Sara Watson at (202) 785- Clients Wants and Expect from PAIMI? 8070 (voice and TDD). (People who are interested in ordering a copy of the journal should also III. Legal · Advocacy - focus is on recent contact Sara Watson~) · developments in the law pertainingi to mental health/disability law and spe~ic areas relating to Transcendent Visions--A poetry litigation such as: Deposing Expert Witness, publication for ex-mental patients, focusing on Negotiation as an Alternative to Litigation, Legal talent not illness. Contributions welcome. David Issues Faced by Psychiatric Survivors, The Kime, 126 Louise Dr., Morrisville, PA 19067. American Disabilities Act and The Fair Housing Act, Update on Current Mental Health Issues.

Please mail to: Judy Lavine, Conference Coordinator, P.O. Box 16311, Rumford, RI 02916, Telephone: (401) 434-2120.

Deadline: Abstracts by June 1. Sara The Committed, A film that tells the truth Watson and David Pfeiffer are soliciting papers on about psychiatric survivors nearing completion and the topic of "Disability'- as an Emerging Field of needs your help.· $15.00 for video preview.. Mainstream Public Policy Research and Pedagogy." Michael Weinberg and Beverly Jones, 2556 E. Villa They have edited a forthcoming special edition of St., Pasadena, CA 91107. Also at same address . the Policy Studies Journal and are now turning you can order an audio tape of Jeannie Matulis' those papers, and new ones, into a book by survivor songs at a cost of $12.00. Make checks Greenwood Press. The book aims to induce out to Michael Weinberg. academicians with little previous exposure about disability to include these issues in their research Crqy Women: Madness, Myth. and and teaching. Therefore, papers· must use some Metaphor, a new 60-minute video featuring: Renee aspect of disability policy to explore larger issues in Bostick, Judi Chamberlin, Kate Millett, Rae public policy. For example, papers may use Unzicker, Pat Weisser, and Sally Zinman. Six of disability legislation to illustrate interest group the movement's most well-known and articulate politics, or explore the· debate over PAS in terms women have a moving,. intelligent, and wide- of the implementation of policies on the federal, ranging discussion on psychiatry, the medical state and local level. Curren_t papers in the model, personal madness, organizing for change, collection include Frank Bowe on consciousness, friendship and much, much morel telecommunications policy, Joseph Shapiro on 60-minute videotape (VHS · format) $100.00 disability'policy and the media, Gerben Delong on (includes postage). All proceeds go to benefit the

12 National Association of Psychiatric Survivors. with ·more bitterness and outrage in any threeg Available from the National Association of · · . minute sequence than in all of 'One Flew Over the Psychiatric Survivors (NAPS), P.o~ Box 618, Sioux Cuckoo's Nest'". VHS $40.00~ Available from Falls, SD 57101-061'8. Dendron News, P.O. Box 11284, Eugene, OR 97440-3484. Feminist Antipsychiatry Perspectives Videotape - This is a special ·3-hour video of a The National Easter Seal Society offers unique antipsychiatry public event held in _Toronto comprehensive award programs honoring media, on September 28, 199L · It features the world- · corporate and volunteer efforts for, by and of renowned feminist author and .antipsychiatry people with disabilities. To ·Receive information activist Kate Millett; as well · as. radical and an entry kit for any National Easter Seal feminist/antipsychiatry activist Pr. Bonnie Burstow; Society award program, please write: National . feminist therapist, social worker and social work Easter Seal Society, 70 East Lake Street, Suite educator Helen Levine; and community 159(), Chicago, IL 60601, Attention: corporate activist/feminist· Carmen Pratt. · Communications Dept., FAX:.(312) 726-1494. Kate and Helen discuss ·their ·personal · experiences with psychiatry. Kate explicates the People Say I'm Crazy, an award-winning 56 human rights issue. (Kate was incarcerated and minute color video documentary about the quality drugged against her will.) Both expose the violent of life and treatment issues from the perspectives and patriarchal nature of this institution. Bonnie of consumers of mental health services, is available gives a historical and . philosophic overview of in 1/2" VHS format from The Well-Being psychiatry generally and psychiatry's treatment of Programs, Inc., 24844 Newhall Ave., #3, Newhall, women in particular. She places particular CA 91321. The video is based on a 1987 survey emphasis on psychiatry's exploitation of women of mental health consumers in California, survivors of childhood sexual abuse. .Carmen conducted by the consumers themselves, to speaks from a Native perspective. She discusses determine what factors promote or deter the well- the psychiatric oppression of Native women--the being of persons diagnosed with mental illness. violation of Native ways. To order copies please mail a money order TASH:· The Association for Persons with or cheque in the amount of $40.00 (for survivors ·Severe Handicaps solicits applications for its Media .and survivor-controlled groups) or $S0.00 (for Awards. They will be presented in two categories, professionals and everybody else), and make it print and film, and will honor presentations which payable to "Phoenix Rising." These costs include · best promote the inclusion of people with severe mailing and handling charges. The mailing address disabilities in all- aspects of society; and which have · for this special offer is: Phoenix Rising, c/o 441 reached a . public audience. Additional criteria Ointon Street, Toronto, Ontario, M6G 2Zt Phone . include · realistic portrayal of severe disabilities, · (416) S38-7103. appropriate language and imagery and meaningful subject matter. All award applications contain Hurry Tomorrow is a· powerful statement complete descriptions of Award criteria and full about the loss of human rights suffered . by directions on how to apply. For applications and psychiatric "patients" and offers a shocking portrait . more information, contact Jered Gross, Committee of the side of psychiatry that is ordinarily hidden Coordinator, TASH, 11201 Greenwood Avenue from public view. The highly acclaimed North, Seattle, WA 98133; Telephone (206) 361- documentary was filmed over a five-week period in 8870, FAX (206) 361-9208. All completed Award a· locked· ward at Metropolitan State Hospital in applications are due at the central office by June Los Angeles. It shows patients tied~down with 30. straps and cuffs, forcibly drugged with tranquilizers, reducing them to helpless and zombie-like states. It includes an appearance by a drug salesperson on the ward. . Vincent Canby of the New York Times said, "An agonizing involving spectacle to watch

13 The Health Services Research Grant pertains to the development of children, Program of the National Multiple Sclerosis Society adolescents, and youth. The scholars' institutions ·provides financial support for studies relating to receive $175,000, including indirect costs, across delivery, outcomes, and funding of health care, and five years to provide partial support for the to quality ,of life, for people with Multiple Sclerosis investigators. The purpose of the award is to {MS) and their families. Consideration is also protect the research time of the scholars during the given to multi~disease. and multi-disability critical early years of their careers. Preference is comparative studies that · include an MS given to researchers in fields relevant of the component. Foundation's principal interest in understanding To e~courage systematic study of relevant how children. and youth cope with stres~s which issues, and the collection of data that can be used may compromise development to ilieir full to inform government and private policies and potential. The Foundation makes awards annually. programs; the Society offers grants of up to Deadlines for applications are July 1 of each year. $20,000 for projects of up to one year. Information on application procedures is available Applications are limited to a three-page narrative, from the William T. Grant Foundation, 515 plus appendices, and are accepted at any time; Madison Avenue, New York, NY 10022; (212) 752- there are no deadlines. Funding decisions are 0071. generally provided within eight weeks. Applications may be for .(1) feasibility Suffolk University announces the first projects, to facilitate planning, development, and disability studies concentration in a Masters of preliminary data collection for major health Public Administration program in the United services studies and to assist in the subsequent States. The concentration is supervised by preparation of full grant proposals to government Professor David Pfeiffer of the Public Management and private funders; (2) targeted small grants to Department, a nationally known scholar in achieve definitive outcomes that may not require disability studies who serves as president of the subsequent research. Consideration wiU also be Society for Disability Studies. It is particularly given to demonstration projects, development of appropriate because the Americans with MS databases, comprehensive literature reviews Disabilities Act applies to all states and municipal_ and speci~ data syntheses. governments in the United States as well as to all Qualified investigators from any private or colleges and universities. For further information governmental organization, inter-organizational contact Professor Pfeiffer, Department of Public (e.g., multi-center collaborators, and qualified Management, 8 Ashburton Place, Suffolk individual investigators may apply, with the University, Boston, MA 02108-2770. exception that we will not fund institutional overhead (indirect) costs. Zenith Awards. The Zenith Awards The Society strongly encourages program extends the association's commitment and investigator publication and presentation of their challenge to the field of Alzheimer's research. results. As the program exists to benefit people Zenith awards will be granted to scientists who affected by MS, we retain a non~xclusive, royalty- already have contributed substantially to the free license to use and to license others to use any advancement of AlzlJ.eimer's research and who are and all data collected in connection with our likely to continue to make significant contributions grants, save for confidential information relating to for many years to come. Awardees will receive a project subjects. grant of $100,000 for two years with a provision for In advance of. submitting an application, possible competitive renewal upon review of interested parties should contact Robert Enteen, research progress. Special eligibility requirements, Ph.D., Director, Health Services Research Grant instructions and an application form accompany Program, at (212) 476-0414, to discuss their ideas . this program. Applications are due August 13, and to obtain the application forms. 1993. Proposals for these grants and awards are William T. Grant Foundation Awards. rated for innovativeness, scientific rigor, .and Each year, the William T. Grant Foundation makes relevance to Alzheimer's disease and other related awards to five young investigators whose research disorders. Proposals are sol_icited for biological,

14 clinical, and social/behavioral research relevant of .520-0232 or write to ILRU, Z323 S. Shepherd, degenerative brain diseases. For an application, Suite 1000, Houston, Texas 77019. All interviewers send your name, mailing address, and type of are also women with disabilities. application desired to: Medical & Scientific Affairs, Alzheimer's Association, 919 .North Michigan Susan Krantz, a professor at the University Avenue, Suite 1000, Chicago, IL 60611-1767, or of Michigan, is seeking individuals with chronic call Diane Hill at (312) 335-5779. physical disabilities who are, willing to discuss their thoughts and feelings about their disability with her. Dr. Krantz, who holds a doctorate in psychology from UCIA and has a chronic disability herself, plans to use the information to educate professionals about what it means to an individual to have a chronic disability. , , All conversations will be confidential. For Anthology Call For Writings of Women more information, contact Dr. Krantz at (313) 763- Psychiatric Survivors-Poetry, Personal Journal 1371 or (313) 662-9821. Writings, Personal Stories, - any form of writing sought concerning women's experiences as New York's Mount Sinai School of psychiatric survivors. Possible areas of interest Medicine Starts Social Science Lab. With a grant include experiences with the psychiatric institution, from the Aaron Diamond foundation, the Mount helpful alternatives and with what is commonly Sinai School of medicine of the City University of called "mental illness." The focus should be on New York is in the process of creating a teaching honest feelings-What was it like for you? "Loose ·1aboratory in the social and behavioral sciences. Screws In The Mental Institution: Writing of The project is sponsored jointly by the Department Women Who've Been There" is the tentative title. of Community Medicine and the Marchand Center Submissions to Jinnie Lind, PO Box 6337, Fall for .Clinical Competence and is overseen by Sam River, MA 02724. Bloom, 1989 winner of Medical Sociology the Section's Reeder Award and Professor of Sociology The Ellen Basker Memorial Award is open in the Department of Community Medicine. The to scholars from any discipline or nation for a general purpose of the laboratory is to· create finished work (book, article, film or exceptional models of problem-based, clinical case-centered Ph.D. thesis) produced within the preceding three education fa the behavioral sciences of medicine, years. Individuals must be nominated for this which engage students in active roles of learning award by a person who can verify the impact of the skills and knowledge of social behavioral this particular work on the field. Self-nomination science that are most directly relevant of the is not permitted, and works submitted without an requirements of community-oriented, high-quality accompanying letter of nomination cannot be care. considered. The $1000 prize is given at the annual Professor Bloom · is interested in business meeting of the Society for · Medical corresponding with medical sociologists and others Anthropology during the AAA. annual meeting. . engaged in similar efforts to create effective Submit a letter of nomination with the education for medical students in the social fmished work by July 1, 1993, to Lynn Morgan, sciences. He can be contacted at: Mount Sinai Chair, Eileen .Basker Memorial Award, Dept of School of Medicine-CUNY, Box 1043, New York~ Sociology and Anthropology, Mount Holyoke E, NY 10029. Phone: 212-241-7846. FAX 212-534a South Hadley, MA 01075. 7193.

Independent ·Living Research Utilization Researcher ·in Developmental Psychology (ILRU) is interviewing women with disabilities on seeks adolescents (ages 14-17) with mild to severe relationships as a part of a national study. AH physical disabilities to speak about their social and information is confidential and a small honorarium educational experiences. Disabilities may range will be paid to all participants. For more from mild diabetes to severe motor impairments. information contact Dr. Margaret Nosek at (713) Subjects will choose a time and a place for an

15 interview lasting approximately two hours. For In our struggle for well-being, a profound · further information contact Loren Faibisch at need for a person-centered language that would (617) 666-2413. challenge the social relations of domination that exist in the clinic, the community, and one person to another is emerging. We realize that psychiatric labeling is like swearing; it is a thinking shortcut that impoverishes the rich diversity and range of human expression. Similarly, the power of stereotype lies in its ability to provide a framework for people to perceive behavior and act RETIIlNKING MENTAL ILLNESS: accordingly. Stereotypic thinking and. labeling From the Inside Out become part of societal rituals that proscribe expectations and provoke discrlmination. Jean Campbell, Ph.D. Th~refore, we are beginning to empower ourselves Director of Research and Quality Assurance by claiming the right to name and give meaning to Department of Mental Health and Mental our lives. We also seek alliance with other Retardation · historically disempowered groups and draw Augusta, Maine knowledge and strength from their struggles for self-determination. When you look out at the array of However, a powerful descriptive aspect of individuals that inhabit our planet, you encounter psychiatric labeling and stereotypy is that it. is many people like myself who appear to have been perpetuated through mass media. Persons disinherited from our birthright to conscious, diagnosed with a mental illness are embraced as emotional lives. We are the quintessential "Other" secular versions of the devil; the "psychopath" is --people who represent the subterranean depths of metaphor for incomprehensible evil. Further, humanity whose differentness makes us not really psychiatric epithets such as "psychotic,11 "lunatic," human at all.· It is common practi~ to call us by "crazy," "insane" and "sicko" are part of a subtext in our diagnoses rather than our names. Usually we daily speech to denote uncontrollable mayhem. are simply referred to as "the mentally ill." Our C.Onsequently, we are feared, shunned, and often personhood is subsumed by a global sentence of denied our liberty, even though a cursory illness and disability even though we are never examination of violence in this society reveals that constantly, or in· all aspects, and not for all time more people die from smoking, drunk driving, gang "out of our minds." It is presumed that we do not violence, or even falling in a bathtub than at the know what is in our own best interests. Our . hands of someone with a psychiatric diagnosis. In feelings of anger and joy are scrutinized for signs fact, we are all too often the passive victims of of pathology and violence. Our needs and desires both institutional and random violence and are imputed as if we were mute. We are routinely coercion. consigned to everyday lives emptied of 'quality, It is ironic that while mental health is vitality, and dignity.. essentially the formation of an acceptable identify-- Interestingly, when you look a little closer, acceptable to oneself and others--the extent to. in the margins of ~ety, you find us coming to which a sense of self is derived from social context voice and speaking for ourselves. Our social is seldom recognized. Our psychological and relations are complex. We are building emotional problems are blamed on phantom communities of support, organizing politically, disease entities rather than the objective con_ditions producing culture and research, and dreaming of a arising out of our parish status. Yet, this irony is liberated future. C.Ollectively we choose to call double-edged and cuts deeply into the psychic ourselves persons diagnosed with a mental illness, health of the nation as well. The stereotype of the people with psychiatric ·disabilities, persons who violent, unpredictable mental patient alSO' fulfills have experienced madness, mental health the social need to control disturbing thoughts "and consumers, psychiatric survivors, or mental health , behaviors by situating violence outside normal clients. ,, But most important, each person has a human agency. Acknowledging the capacity ·to name; each person has a story. perform violent acts in one's "right mind" would

16 demand a fundamental reassessment of normalcy Strands of consciousness intertwine, ignite, and and human responsibility for evil. Confronting mark a path towards undiscovered country. In the psychiatric stereotypy could compel people to come desert of the heart, our spirits have travelled to terms with who they are and the meaning of beyond the grasp of temporal boundaries to a

existence. On the other hand, the failure to risk place far from home1 but close to the soul. (Jean '" the comforts of an unexamined conscience Campbell identifies herself as a mental health routinizes reality , by denying one's implicit consl:lmer/survivor researcher. She directed the connectedness to others. Without the expectation Well-Being Project, one of the first research to feel or act as members of a socially and studies designed, administered, and analyzed by the spiritually integrated community, a coldness people who have experienced madness. She also envelopes the distance between people that allows wrote and co-produced the . award-winning escape from recognition and caring. Of course, documentary "People Say I'm Crazy," and is one of there is safety in denial. of such intimacies; a the founding members of the Consumer/Survivor welcomed sense ofestrangement as one breathes in Mental Health Research and Policy Work Group.) the air another exhales. Still, these expenences are. inextricably shared as memories of an undefined but palpable loss of hope and possibility. Consumer-Practitioners and P§Ychiatrists Share However, epistemological necessity of Insights About Recovery and Coping. people diagnosed with a mental illness to define their humanity in their own terms in the public, by Andrea Blanch, Ph.D private, and inner psychic spaces of human Daniel Fisher, M.D. consciousness is producing a social history of ·William Tucker, M.D. recovery and healing. Latent in each person's story Dale Walsh, M.Ed. is a shared integrity bound by a vulnerability to Janet Chassman, M.BA. existential truths if one listens, if one speaks. In this issue of DSQ, I invite you to listen In the field of megicine, discussion respectfully to the many voices of the people who between doctors and patients about how they can are called "the mentally ill" and to join our best collaborate in dealing 'with a particular illness liberation movement for a life worthy ·of song, has not generally been the norm. However, dance and the community of others by rethinking medical sociologists have· recently begun to argue mental illness from the inside out. Psychological that "the experience of illness" ·is central to an and emotional problems are sometimes improved understanding of the sociology of health care through acts of human charity, medical miracles, (Zola, 1991 ), and that the manner in which and institutionalized care. However, we have individuals define their own symptoms and act to discovered that the transformation of an · alleviate them is critical to an understanding of impoverished future to a life of meaning and worth "illness behavior" (Mechanic, 1986). Similarly, the comes through mutually respectful dialogue, the doctor-patient relationship is currently being re- courage to struggle, and the grace of insight. examined. Candib (1987) suggests that although Everyone has unique gifts to offer in the building there' are' risks associated with self0disclosure, of a positive, healing culture threatened by a physicians who are willing to share· their personal poverty of vision as much as resources. experiences as patients may increase both empathy The rapid growth and acceptance of and reciprocity in. the doctor-patient encounter. mental health professional and consumer In mental health, dialogue between partnerships in research, services, and public policy psychiatrists and persons diagnosed with a mental shows the potential for change when people work illness is, if anything, even less common. However, together in relationships of mutuality and respect. even here some steps have been taken. The In a world of prejudice, poverty, loneliness, and growth of the consumer/ex-patient movement injustice, our voices illuminate the value of self- during the last 20 years has allowed people to help, creativity, meaningful work, basic human articulate the vital importance of stating their dignity, and freedom. needs in their own words, making choices, and These pioneer journeys into dialogue and taking responsibility for their own treatment. reflexivity also have unexpected consequences. Professionals and policymakers have re~ponded

17 with efforts· to redesign professional roles (e.g., individuals felt SQcial distance is no greater than· Smith and Ford, 1986) and to create forums for that in general medicine, while others referred to discussion and exchange of perspectives. For the two groups as representing "two different example, a recent series of "Pioneer Dialogues" worlds". Psychiatrists were also surprised by the brought consumers/ex-patients and state mental degree to which peopl~ recounted negative health administrators together to discuss system . experiences within the mental health system, and reform (Loder and Glover, 1992). raised questions about the representativeness of . Dialogue with mental health clinicians the participants. entails some unique difficulties. Many ex-patients Second, psychiatrists appeared t~. view are angry_ at treatment they have received or medication and diagnosis as important tools, and witnessed in the mental health system ( Chamberlin, compliance ( and in some cases, even control) as 1978). In addition, mental health professionals are positive factors in treatment. In contrast, most sometimes criticized for embracing a theoretical consumer-practitioners expressed the opinion that framework which ·reinforces a "deficit" model of all use of coercion or control is counter- human problems (Gergen, 1990). However, a therapeutic, and criticized the medical model and growing number of people with a psychiatric the current diagnostic system as disempowering . history are entering the mental health field, and and detrimental when used to the exclusion of some professionals have started to disclose their other explanatory frameworks. They also strongly own psychiatric histories~ As these "consumer- advocated choice in the taking of medication and practitioners" openly discuss their own process of stressed the importance of being informed by the recovery, they express many of the ideas developed psychiatrist about the negative and positive aspects by the consumer/ex-patient movement in a context of each drug. Third, the two groups expressed and a language which encourages professionals to differences of opinion concerning aspects of timing listen. in . the treatment and · recovery process. The Dialogue Process , Psychiatrists are often under extreme time In New York State, an ongoing dialogue pressures, and· may feel responsible for· offering has been created between seven_ psychiatrists· and quick treatment in order to reduce pain or because nine "consumer-practitioners'\ The dialogue delay in treatment of a psychotic episode may . process is intended to accomplish three goals: 1) adversely affect outcome. An alternative view was To create a forum for psychiatrists and ex-patients . presented ·by several consumer-practitioners, who to exchange perspectives; 2) To begin developing a expressed the need for psychiatrists to take time to· shared vision of recovery and; 3) To consider ways know the individual in depth before intervening, in which the treatment relationship could be more and who suggested that eliminating pain (or collaborative. symptoms) premature!~ may cut off the recovery The dialogue was initially structured process. around five questions: 1) What does "recovery" Despite· these differences, the two groups mean ·in the context of a diagnosis of serious had much in common. Many individuals expressed mental illness? 2) What are· the most important surprise at how similar their experiences had .been, factors facilitating a recovery process? 3) What are and at how willing both groups were to listen and effective ways to recognize and manage recurrent respond thoughtfully to each other. Getting to symptoms? 4) What roles can the recipient and know each other as individuals appeared to be the practitioner play in developing and using client- important. As one individual noted: "Revealing specific coping strategies? and S) What personal our personal histories helped me to connect with ·experience led you to this understanding about the psychiatrists and qther recipients on ·a more ·recovery and coping? These questions focused the human level. Tµ.at connection served to contain discussion of issues where both groups could be the turmoil I feit during later confrontations." expected to offer insights. Recovery and Copin& Points of Controversy This dialogue was initiated in [esponse to 1 Several points of controversy emerged · the recognition that the concepts of recovery ·and during the dialogue process. First, there were coping have not been widely incorporated into different perceptions ofthe social distance between . clinical practice for persons diagnosed with serious .psychiatrists and the people they serve. Some mental illness. One psychiatrist noted after a

18 conversation with a recipient: "He said that from appears to be critical for retaining a sense of time to time he still has symptoms, which amazed control rather than being engulfed by one's me. He doesn't look symptomatic, and he has a symptoms. As one person said, "there .are always very important job... The fact that he does coping islands of clarity. We need to train the mind to exercises, this was new to me. Fifty years in have a center, so that the person can control psychiatry and I had never heard this." symptoms." Qinical researchers have recently begun to 5) 11Remembering your track record" -- · investigate the process of recovery from serious learning from observing your own mental and mental illness. Breier and Strauss document the emotional behavior -- is critical · for coping. importance of social relationships (1984) and self- Although problems may recur repeatedly, giving control over psychiatric symptoms (1983) in the appearance of little progress, incremental recovery. Other studies have demonstrated the learning may .in fact be taking place. effectiveness of personal· coping strategies (Cohen 6) Self-directed coping strategies are and Berk, 1985; Wiedl and Schottner, 1991). The effective and can be learned. For example, training vision of recovery emerging from the dialogue oneself to meditate may make it possible to let · process is consistent with much of this earlier delusional thoughts go. Most individuals reported work. However, the direct participation of having developed coping skills on their own, recovering individuals alters both language and although one noted that his psychiatrist had conceptual orientation in subtle but potentially pointed out some of the things he was doing to important ways. The following obseivations and cope. quotations occurred during the first five-hour 7) Maintaining or developing connections dialogue, and were subsequently reviewed and to valued activities and people is critical to the revised during the second dialogue. · recovery process: "Don't give up anything that you 1) Recovery is an active, ongoing, and value." Psychiatrists noted that many people can individual process. It occurs internally, is often continue normal activities such as work even when very distinct from "treatment", and takes ·many they are in the hospital. different forms. As one individual stated, "I'm not 8) Connecting with other people on a recovered. I'm in an active process of recovery." human level was also seen as important. 2) "Recovery" relates not only to the Overcoming attitudinal and interpersonal barriers experience of symptoms, but also to the secondary may be the most significant barriers in promoting assaults of stigma, discrimination, and abuse: One . recovery, since it requires professionals to examine person noted that "Dealing with internalized stigma their own inner process and coping strategies, was almost ·as difficult and took as much away sometimes a painful process. from my life as the symptoms did." · 9) Recovery is a process of "finding 3) Hope is perhaps the most fundamental meaning in your experience." Each person's factor in recovery. Moreover, psychiatry has a key construction of meaning was different, but the role to play in fostering hope. As one person put capacity to find something instructive about the it, "It's important that when people are admitted personal experience of mental illness appears they immediately learn there's hope. The critical to recovery. psychiatrist -- the gate keeper -- is the best person Toward a Collaborative Doctor-Patient to do this." Relationship 4) The establishment of a sense of control Gillick (1992) argues that public or free will is critical to recovery: "For many years confidence in the medical profession is eroding, I subscribed to the 'please fix me' model. Only and that physicians are increasingly disillusioned when I became involved in recovery did I realize with their profession. She suggests that "the that no one· is going to heal me, I'm going to be mutual mistrust and even suspicion that currently the person to do that." Conversely, the lack of poisons so many patient-doctor relationships can sense of control can impede progress. One only be allayed if there is a shared conception of psychiatrist recounted a patient who had stated: the ground rules and if there are well-defined "I've learned that I have a biological disease and avenues of communication" (p. 83). The dialogue until you find a cure, I'm not going anywhere." described in· this paper demonstrates that mutual Developing some sense of a "healthy" self discussion on difficult issues can be productive, and

19 lends support to the hypothesis that understanding (4), 407-410. the subjective experience of mental and emotional Gergen, KJ. (1990) Therapeutic professions and distress may be critical to formulating an effective the diffusion of deficit. The Journal of response. In addition, the dialogue appears to Mind and Behavior, 11 (3&4), 353(107)- have had a -personal impact on many of the 368-[122]. participants. For the consumer-practitioners, the Gillick, M.R. (1992) From confrontation to dialogue was 'very healing to be involved in", but cooperation in the doctor-patient also personally difficult and painful: "It threw me relationship. Journal of General Internal back into the belly of the experience ... It took me Medicine, 1., Jan.-Feb., ·83-86. years to get perspective, but now I need to revisit ·1...oder, A. ·and" Glover~ ·R. ·(1992)"New frontiers: it." Psychiatrists were also personally affected by Pioneer dialogue between the experience. One noted: "I have started consumers/survivors and commissioners. listening to patients differently. When they say, MHSIP Updates, November. 'What can I do between now and next session if I Mechanic, D. (1986) Illness behavior: An overview. become symptomatic?', I used to pass it off. Now Illness Behavior: A Multidisciplinary I listen and respond with suggestions." Model. edited by Sean McHugh and T. Conclusion Michael Vallis. New York: Plenum. The dialogue process has allowed Smith, M.K. and Ford, J. (1986) · Oient participants to understand ·what they have in involvement: Practical advice for common as well as how their experiences differ. professionals. P§Ychosocial Rehabilitation This communality of experience reduced social Journal, .2 (3), 25-34. distance, allowed members of both groups to see Wiedl, K.H. and Schottner, B. (1991) Coping ~th each other as individuals, and led to the symptoms related to schizophrenia. articulation of a set of shared principles about Schizophrenia Bulletin, 17 (3), 525-538. · recovery. In addition, the dialogue modeled a . Zola, I.K. (1991) Bringing our bodies and ourselves process of collaboration that could potentially form back in: Reflections on a past, present and the basis for . a different relationship between future "medical sociology". Journal of psychiatrists and the people they serve. Finally, Health and Social Behavior, 32 (1), 1-16 although still in an early stage, the discussion also raises the possibility of a wider involvement of consumer-practitioners and other ex-patients in a Time Management In A Long Term variety of roles in the treatment of individuals Psychiatric Hospital diagnosed with serious mental illness. by Anne Myra Benjamin, Ph.D

REFERENCES There are disparities between the manner Breier, A. and Strauss, J.S. (1983) Self-control in in which time management is viewed by the staff psychotic disorders. Archives of General. and the patients of a: long term psychiatric hospital. Psychiatry,~ 1141-1145. The observations below are based on my own one Breier, A. and Strauss, J.S. (1984) The role of year hospitalization. social relationships in the recovery from Upon entering the Milieu, my first concern psychotic disorders. American Journal of was my length of stay. Short of committing me, (I P§Ychiatry, 141 (8), 949-955. · was a 'voluntary patient'), my doctor refused to C.andib, L.M. (1987) What doctors tell about commit himself to a specific discharge date. He themselves to patients: Implications for said- it would interfere with my therapy. In fact, intimacy and reciprocity in the relationship. the absence ·of a targeted endpoint became the Family Medicine, 12, 23-30. focus of my 'hours' to such a degree that I was Chamberlin, J. (1978) On our own: Patient- disciplined. My children's visits were decreased to controlled alternative to the mental health three times a week. Ironically, then, instead of system. New York: Hawthorne Books. dwelling on a childhood as a good Freudian, I Cohen, CJ. and Berk, L.A. (1985) Personal coping spoke. noncompliantly of the present - of my styles of schizophrenic outpatients. children's childhood. Hospital and Community Psychiatry, 36 . The absence of a time limit to my

20 confinement terrified me, but so did the converse awkwardness. In other words, they had 'bad imposition of time limits. In contrast to my timing.' One repeated an unreasonable wish list therapist's infuriating nonchalance regarding my verbatim, in vain, for months, to the merriment of time in· the long run, the unit staff saw fit to both staff and patients, including myself. The subject me for the short run to incremental mechanical nature of her requests seemed to justify 'checks' - every ten minutes, then every fifteen their denial as .she would inevitably, machine-like, minutes, etc. No sanctuary here. If I wanted to restate them at the next meeting. drink from ·a can of Pepsi, not allowed in one's I was the source of amusement once, when room, for. example, I had nine minutes until the I first arrived, also on account of bad timing. I next check. had not been informed of the sequence to follow Once a week, at the privilege meeting, the in requesting privileges. First, escorted meals and patients were deluded into believing that they were escorted 'hours.' Then, unescorted. Later, the masters of their time. The patients' unescorted time at a particular place on grounds, anticipation was palpable. Indeed, the hope and so on. When I requested too much too· soon, engendered by this illusion made the period prior my impetuosity produced a comic effect. My own to the meeting especially pleasant. Visitors, on and astonishment complemented that of the veteran off grounds .privileges for the entire week - patients as I had no notion that·I was completely something to look forward to during the empty out of sync. . hours from NOW until THEN ° were to be A certain theatricality emerged from these decided. meetings. One patient, reduced to wearing only a The patients' focus was on the short-liyed hospital gown because of her many escape pleasure of a visit from an outsider. This attempts, reacted to the rejection of every one of conflicted with the doctor who presided over these , her requests by emitting a screaming slew of foul meetings whose long-range perspective was words while she dramatically rolled into aball, for generally conservative, pessimistic, even ominous. all to. see, the scroll of toilet paper on which she A typical exchange: had written her list, and threw it at the doctor in . Pt.: I would like my mother to visit me for charge. I was told by my therapist that wlgarity one hour tomorrow afternoon. and provocations were encouraged and even Dr.: Do you think you are ready? uttered by the psychiatrists as a ploy to promote Pt.: Yes. assertiveness and that I was expected to engage in Dr.: I don't think you can handle a visit these histrionics. from your mother yet. I'm afraid you'll go One patient refused to take part in the psychotic on us again. Let's wait another week. charade of the privilege meeting and was consigned The verdict thus rendered, the patient was to a roomless ICU bed 'until he was ready.' He consigned to yet another 1S0 hours in which to would not be 'ready' for three seasons: winter, recreate her hopefulness ex nihil and nurture it spring, and summer. un9} the next meeting. An especially daunting feat I was sent to the ICU twice: one time for a diagnosed depressive - for anyone. · following a suicide attempt, the other, because 'I Few patients risked an extemporaneous was having a hard time! The ICU consisted of an delivery and instead, prepared their requests on L-shaped open area beside the nurses' station. scraps of paper. An inordinate amount of time The patient was not allowed to step past a line of was spent in debating with oneself or with other masking tape on the carpet. One was divested of patients the effectiveness of one's wish list. The every privilege one had painstakingly accumulated. order and wording of the requests as well as a I was not informed of my length of stay in defensive arsenal of rejoinders were minutely the ICU. I ruminated about how long it would considered. · take me to recover my privileges. I wondered how The doctor-arbiter appeared to rely on his I should occupy my time on my bed in a hallway rejection. of the obviously irrational requests. as under the constant watch of the staff. proof of his ability to render judgment on the I asked the therapist and the unit doctor more subtle cases. It seemed, for example, that a repeatedly whether I was being punished for being number of patients had been cast by the staff as suicidally depressed. It never occurred to me to stock comic characters, as it were, because of their question them about the possible suicide-producing

21 effects of the medications they were prescribing for extremes to which an elite ·clique of anorexic me. I wanted to know when my sin would be women went in order to utilize their time, albeit atoned for and when I would be restored to my pathologically. They measured the dimensions of room. I was assured that this. hallway pillorying each hallway. They requested at .the privilege was not a punishment. Neither were the meetings the precise amounts of time required to chaperoned trips to the bathroom. Nor would my 'walk ofr the calculated number of calories to be being 'zoQed' to the living room all day long, as the . eaten at each meal. Even in the ICU, where their protocolled step out of the· ICU, constitute walking was reduced to pacing, these women punishment in their minds. · valued their time, and therefore, their selves. 1V time. for all three· ICU patients was ·Instead of ridiculing their Byzantine machinations, rationed to about two hours a day: I deferred, as it seems to me that the hospital could have a marginal believer in Darwinism, to the preference redirected the energy of these women as .well as of another taller and stronger patient, who, that of the other patients to more useful ends, appropriately, engrossed himself in violently · such as community service - but that is the subject gruesome Nature Specials. of another article. (Anne Myra Benjamin has a Besides reading history'books, presumably doctorate in French Literature. She has published to escape the present, this same patient became three books on literature and women's history and expert at completing crossword puzzles. The continues her career as a writer. Ms. Benjamin availability of a newspaper and a pencil from the resides near Washington, D.C. with her husband, nurses' station as well as· the intellectual son, and two daughters.) stimulation and, most importantly, the time consumed; made it an attractive hobby. Inevitably, though, the more efficient he became, the less time Rethinking Mental Illness: A he could dispense with. The pastime eventually Personal Saga lost its appeal. Profiting from his experience, I busied myself, in and out of the ICU, with hobbies by Judith Poole, that required· an eternity to master plus a great degree of concentration: namely, embroidery, The gifts of wisdom, grace and calligraphy, and writing. compassion...grow in those in Back from the ICU and in my room, I whom the very idea of being / ruled a small kingdom. At my disposal were human has been challenged and hundreds and hundreds of hours. Except for the undone. (Moss, p. 10) brief interruptions of the various unit meetings, the 'hours' with my therapist, and occasional 'groups' How much of my personal story must I · such as Relaxation or Current Events or Group tell? Does mine differ from the others? God Therapy, and family visits, my time was a vast forbid it should be ordinary! I am reluctant to DESERT. A lonely emptiness. After being told speak, but the silence has to be broken because that, "We can't let you go home right now because IT'S STIIL GOING ON. To keep the silence, I you'll just try to kill yourself again," I deduced that, cut the tips of my fingers and call it an accident. ironically, my depression was going to have to wait on the back burner· while I dealt with the more A Little History immediate problem of what-to-do-with-all-of-this- I'm eight. I have frequent headaches, time. The incessant smoking and small talk and trouble sleeping. I'm taken to a neurologist. His sleeping and 1V watching and ping pong playing -- conclusion: l wony too much. He suggests all to no end other than to pass the time away - sending me to the comer for a soda. were an exercise in degradation. The contrast I'm nineteen. Faced with grand decisions: between the firm gait of the staff as they arrived What to major in. Who to be. A grand initiation: and departed at the changes of shift and the sex in the glen. Next morning, I have a nervous aimless saunter of the . patients represented breakdown. I'm sent home from college, delivered graphically for me whose time was considered more to the. arms of my mother. Imagine my parents' valuable. shock. Their good little girl goes off to college and In conclusion, I would like .to cite the comes back a mental case. ) 22 I am in the hospital eight months. The again when I was 30. doctors call it a "psychotic break." After many months that include thorazine, stellazine, electro- Is there any facet of human ·expression shock, catatonia, an affair with another patient, that can be suppressed, or another facet pregnancy, and an abortion forced upon me by my overly cultivated, without a wavefront of parents, an attempted suicide, and the assurance of imbalance that communicates through the the hospital staff that I will spend my life in a state whole... ? (Moss, p. 194.) · hospital, I somehow manage to recover, perhaps out of sheer defiance. Finally, at the age of 47, the traumatic event that I'm thirty. My life becomes complicated gave birth to aH the suffering and confusion with physical ailments. In October, I have gall revealed itself. Healing from these terrible flash- bladder surgery. In December, I'm diagnosed with backs of abuse has been the most difficult thing I Crohns, an autoimmune disease of the bowel. In have had to face. Yet it has led to the most April, after taking prednisone, I have my first significant rewards of this journey. For the first manic episode. time, I have gone deep enough to know that my "nervous breakdown" was no random event. I now We ... wave off · the deep can look at everything that followed as my questions, sedate the anguish, and preparation to be a healer. I feel compassion for in every way possible try to lower that crazy wounded self, hospitalize'cl so long ago, the energy.state. We confuse the that self who stmggled so to heal from a shameful narcotized calmness of a doped wound, .and went unheard. individual ... with the quiet The first time we hear a story of abuse, of centeredness of heightened boundary invasion, it grabs our attention. consciousness. (Moss p. 105) · Admitting such atrocity can be perpetrated by one human being upon another makes us feel There are many turns of the spiral,· many vulnerable. When we hear that first story, we deny 1 "recoveries," before I make my way out of the that it could possibly be true. maze. I am hospitalized with Manic-Depression every year from 1975 to 1979, and again in 1986 ... there is too often an anxiety in and 1987. the face of listening - perhaps I The most intense chapter in my mental should say a fear of what might health history began recently, at 47, with the be heard and its disturbing, dramatic hormone shift that heralds the approach distressing effect on us as of menopause. · After almost thirty years of listeners. What we will hear, it continuous psychotherapy, traumatic memories we allow ourselves to listen, will began to make their way to the surface. In the be so disturbing, so temble ... or dramatic form professionals call abreaction, there might be some incidents from long ago repeated in the moment, communication that would stir unleashing a flood of emotion. Characters in these disturbing feelings in a healer - "enactments" were clearly visible. anger, shame, guilt, sexual Vivid memories surface of one incestuous feelings. (Jackson, p. 1629.) act. I am in my crib, an infant of 8 months. My After we hear a number of these stories, father's form looms over me. I am choking on his be begin to know in our bones they are true. Our penis, drowning in his semen. Forty-nine years bones ache with the knowing. We don't want to have been shaped by that moment. get too close. We are afraid. There may be skeletons in our own cobwebbed memories. Summing Up At nineteen I had a dramatic full blown We have experiences pain from nervous breakdown. Since I was not allowed to early childhood - a pain generated heal the underlying wound, or even uncover what by our need to abandon parts of it was, the same issues of shame, lack of self- our fullest potential so that we esteem, ambivalence about staying alive, surfaced could receive recognition from

23 our parents... (Lerner, p. 168.) healer lets you in, and does it by listening to you. The doctor thinks, "I must do something." A No one could motivate me to heal. And . healer has the ability to do nothing. S/he has a those who obstructed my healing, however deep faith. · unintentionally, with the typical emphasis on functioning, on controlling behavior, on use of Healers experience a sense of psychotropic medications, could not prevent it holiness with that of wholeness, forever. · such . that the liniverse seems The healing comes from providing a 'third Godlike, enchanted, and filled ear.' As phrased in Listening to theThird Ear by with love. (Dossey, p. 71) Reik (1951) and quoted by Jackson, The healer knows how to get out of the way so The psychoanalyst needed to healing can proceed. The healer is healed along 'learn how one mind spe$ to with her client. A healer knows how to listen another beyond words and in deeply and passionately and is not afraid to be silence.' This 'third ear ... can taken places beyond her knowing. hear voices from within the self My initiation as a healer came without that are otherwise not audible' conscious intent. Drawn to a Sound. Healing (Jackson, p. 1626~) Intensive, I fancied myself the only wounded one present. But the opening ritual dispelled that Before I could begin to heal, I had to feel notion. Then, as the week unfolded, I heard. participated in the circle both as a healer, and as Empathy is the recipient of others ministrations. I discovered that either rile brought a sense of profound ... coming to know about another healing. · through an imaginative experience Healing is not a nine-to-five job, it is a way of being in the world of his or her of life,· a quality of being. You know when you thoughts, feelings, and attitudes. are in the presence of a healer. Your heart opens. ...what is involved is a ,profound Your breath deepens and slows down. You feel liste~g. (Jackson, p. 1628.) like you've come home. You shed pounds, feel lighter, taller, brighter. (Judith Poole, director of The · healing from incest has involved Pooled Resources, . is a stress management allowing dissociated ·fragments of self to express consultant and author of The Little Grounding themselves, using movement, sound, collages, and Book. You can reach her at (6170 923-8856. To most recently written words. Allowing creative self order her book, send check of $13.00 ($10~00 +. expression eliminates the need to express myself $2.50 S & H, + .SO Mass Sales Tax). payable to through illness. It brings the. opportunity for· Judith Poole, c/o the Little Grounding Book, P.O> integration of these inner selves. Bo:x: 7~2, Watertown, MA 02172-0762) I was lucky to find two remarkable healers, one of them a psychiatrist. Emeth and Greenhut REFERENCES describe the qualities I call remarkable: Including Books that Profoundly Influenced my ...we must be willing to be with Healing others in their experience as they Dossey, Larry, MD (1989). Recovering the Soul. live with the questions and wait NY: Bantam Books. 'for their personal . answers to Douglas-Klotz, Neil (1990). Prayers of the emerge. This 'being with' is at Cosmos. San Francisco: Harper and the heart of health care. (Em_eth Row. and Greenhut, p. 65.) Emeth~ elaine V. an.d Janet H. Greenhut, M.D. (1991). The Wholeness Handbook. NY: a doctor can be a healer, but not all doctors are. continuum. And many healers are not doctors. A doctor gives Goffman, Erving (1963). Stigma. Englewood you something to take, or takes something out. A Qiffs, NJ: Prentice Hall.

24 Jackson, Stanley W. (1992)~ "The Listening Healer are closed to members and the sign-in sheets that in the History of Psychological Healing." count members' utilization are given more American Journal of Psychiatry. (149:12). attention than what happens in the program. It is Pp. 1623-1632. . beyond the staff who have left from burnout or John-Roger and Peter McWilliams (1991 ). Life desperation. It is beyond the lack of policies and 101. Los Angeles: Prelude Press, safeguards for human rights in the work place. It (1988). You Can't Afford the Luxury of is even beyond the arguments over what clubhouse A Negative · Thought. Lost Angeles: model to follow and whether those models can be Prelude Press. transplanted willy nilly from one locale to another. Lerner, .Mark (1986). Surolus Powerlessness. It is beyond the arguments over consumer run Oakland, CA: The Institute for Labor versus consumer staffed and the nature of and Mental Health. democracy in club house organization and decision May, Rollo (1981). Freedom and Destiny. NY: making (De Danaan, 1991; McLean, 1991). Dell Publishing Co. Moss, Richard, M.D. (1981 ). The I That Is We. When Franz Fanon coined the term the Berkeley, CA: Celestial Arts. "colonized mind" in Black Skin, White Masks Nekipelov, Victor (1980). Institute of Fools. NY: (Fanon, 1967) he posited that the social and . Farrar Straus Giroux. economic realities~ of the white ruled societies in Peck, M. Scott, M.D. (1978), The Road Less which the black man lived were accompanied by Traveled. NY: Simon and Schuster. an internalization of inferiority. This inferiority Singer, June (1990). Seeing Through the Visible was telegraphed to him in all his relationships and World. San Francisco: Harper and Row. interactions. .This internalization of inferiority was Stevens, Barry (1970) .. Don't Push the River. what he called the colonized mind. . Lafayette, CA, Real People Press. The colonized mind is a compelling Taub-Bynum, E.B. (1984). The Family construct with which to examine what is happening Unconscious. Wheaton, IL: Quest Books. at clubhouses. There are inexplicable and arbitrary decisions made, abrogations of rights, and subtle humiliations and degradations experienced Qubhouse Participation And The regularly by members and staff. These are incidents Colonized Mind th.at in other work situations do not go on simply gossiped about. In most organizations, members by LLyn De Danaan, Ph.D. organize and go to the board to the board with grievances. Staff strike if there are no personnel policies, decent wages, or protection of their rights. "... almost always, during the During a performance group workshop, at initial stage of the struggle, the the clubhouse I evaluated oppressed, instead of striving for during ·1990-91, a teacher of "theater of the liberation, tend themselves to become oppressed~" noted his frustration with our oppressors, or "sub-oppressors." participation. Our collective scenes, meant to The very structUre of their thought allow us some power over an oppressive situation, has been conditioned by the contradictions were all constructed by us so that we remained of the concrete, existential situation passive. We expected others to come and make by which they were shaped." the situation okay. The teacher had never seen a group use the material he presented this way. The Paolo Freire in Pedagogy of the ·Oppressed behavior seemed so contrary to liberatory ·theory that it was clear we were a long way from taking charge of our own oppression. There is something subtle going on in clubhouses across the country, something that I believe what he saw was the colonized those of us in the "consumer movement," and those mind at work. People in the group said this of of us in a position to support that movement must their behavior in the scenes: "But if I take action in give attention. It is beyond whether staff offices a situation like that, I'll end up back in the

25 hospital." Or "If I speak up when I'm being picked producing, acting and reflecting takes place is in up by the police, they'll just put me in handcuffs." performance group. While directors of clubs often In other words, recognition of the social realities of fear tha~ performers are "too critical" of the system their situation led to an internalized belief in the or create "conflict of interest" for staff who are danger of action and the grave risk of their own involved, there are other times when performers protest. Liberation, in the model· our teacher are used for public relations. This work sometimes taught, is a combination of reflection and action. contradicts and undermines the "stigma-busting" or The reflection promotes or incubates the possibility systems change work with consumers and mental of transforming one's situation and that is carried health professionals to which these performers are forth in how we behave in the world. It is by dedicated. Consumer/Survivor performance groups transforming and creating that human beings' are trying very hard to be producers, not simply produce new social institutions, ideas and concepts consumers. Their work with their own experiences, (Freire, 1970 and 1974). the reflection and _the act of working out in speech The colonized mind .cannot, until it is and action new solutions to life experiences lead transformed, transform or be creative. It is not members away from a colonized mind set, only .different but less than as it perceives itself. It particularly after they learn about their own is therefore able to be subjected to the scrutiny of passivity. As. a group, members are·then no longer the state and those agencies that have power to possessions of the club. · make decisions about the life of the colonized. In a compelling book, Private The clubhouse model, for all its good intentions, is . Terror/Public Life: Psychosis and the Politics of a product of the state and its agencies, and well Community, James M. Glass explores this practice meaning people, _including consumers, who found of speech and claiming of public space for one's the time, money and other resources to make a thoughts and perceptions as perhaps the most clubhouse happen. However the invitation to desirable activity that can be supported in a create and transform one's relationship to one's therapeutic community. It can, he says, be see as illness, community, and the state in a clubhouse is "as an antidote to the seduction of the inner." put forward with· parameters attendant. The invitation to reflect and participate in a community "The ability to .negotiate, to has unstated but inviolable boundaries. These express viewpoints, to make parameters and boundaries are like ·prescribed alliances, to sustain relationships, drugs; they are products of a belief system that to manipulate and handle says health must be "managed" and that "quality" of imbalances in power, to life can be administered and like a tonic without acknowledge and confront addressing underlying issues of like power and authority, to internalize .a access to wealth (Illich, 1990). reciprocal sense of responsibility The colonized mind is a mind that has and obligation, to transform experienced state institutions and hospitals in empathy into regulation and . · which. if one has rights they are unclear and governance: all these actions take compliance is the key to privilege and release. The place in language, in a public, colonized mind is a mind that has experienced intersubjective field .... becoming power (as in the power of.the other) through loss aware of existence as an of family, children and possession as well as interactive process, · taking freedom of choice in medical care and housing. participatory risks in the very The colonized mil;ld is easy to abuse because it is public environment of the ward, a mind that is not accustomed to a public life, of forging · identity in relationship speaking up for rights, or insisting. The process·of with others, expressing liberating oneself from a colonized mind must dissatisfaction--all assume include the possibility of producing . and acting therapeutic properties in moving upon one's own ideas and . re-presenting and consciousness away form its reflecting upon one's present relationship to the enchainment by delusion" (Glass, world. 1989, p. 29). One of the few pl~s in clubs that this

26 The delusion in this case is the delusion of critical of it. The issue is not whether staff and powerlessness that is impressed upon the mind by director are consumers, but whether they have colonization. some minimum but specific skill that the club In some ways, the clubhouse itself provides simply must have present to be legal and that kind of public life. At its best, some work is accountable to funding agents. available and friends meet friends for lunch or in The question· is whether there will be a smoke room and talk about the experiences, persons who have transformed their own personal concerns, and contemporary issues. relationships with psychiatric disorders and their People have a sense that this is their place. It own sense of power in the public space; whether does, at its best, provide a "chance to be political, there will be those who have these skills and not pathological and to be a caregiver not just a qualities of leadership. Age, experience, empathy, receiver of care" (Estroff, 1983). At its worst, balance and the kind of ego-lessness which would there is little productive or expressive work support the change agent that a club be is not available in clubs. The staff and leadership do not found easily in any population. Therefore we must capture the potential for community building, and continue to look, to study, to engage in dialogues directors are perceived of by many members as about this work for there are no pat answers. controlling and arbitrary. Therefore members feel Ultimately, dialogue is that which makes our powerless to transform the Qub into what they community an authentic community. want it to be .. Ultimately, however, the members are not powerless. The clubhouse movement is REFERENCES still young and constantly transforming. New structures for participatory engagement are De Danaan, LLyn. (1991 ). "Red Light certainly available. Critically and openly addressing Green Light : The Rocky Road of a Consumer the colonized mind and other obstacles to Managed aub House" ..Presented at the 90th empowerment is one path to taking ownership of Annual Meeting of the American Anthropological this movement. The transformation of colonized Association. Chicago. pp. 1-14. silence into language and action is .an open ' De Danaan, LLyn. (1992). "Disabling possibility (Lourde, 1984). Categories: Public Policy and Gender in Programs Someone asked me recently · if the· for the Psychiatrically Disabled". Presented at the problems of clubhouses means never having 91st Annual Meeting of the American consumer operated clubhouses. Of course not. I Anthropological Association. San Francisco. pp. 1- believe only those who do not trust human beings 14. to run their own lives and organizations could Estroff, Sue. (1983). "How Social is come to that conclusion. The issue here is not Psychosocial Rehabilitation". . whether staff and directors are consumers, but Psychosocial Rehabilitation Journal. (7:2).pp. 6-20. what experience and skill staff and members have Fanon, Franz. (1967). Black Skin, White with people, with participatory aims and liberatory Masks. New York: Grove Press. goals, and with the terror of freedom. The issue is Freire, Paolo. (1970). Cultural Action for whether staff are comfortable with being teachers Freedom. Cambridge: Harvard Educational and learners, with mutuality, and with allowing Review. their authority to become transparent as they Freire, Paolo. (1974). Pedagogy of the support members in developing comfort and Oppressed. New York: Seabury Press. ultimately leadership in the public arena. The issue Glass, James M. (1989). Private is not whether staff and director are consumers but Terror/Public Life. Itaca: Cornell University Press. whether they have the skill and comfort with their Illich, Ivan. (1990). "Health As One's Own own identity to look outside the club in order to Responsibility: No, Thank You!". Manuscript for meet their personal needs for owning, for praise, Worpswede Conference. pp. 1-8. for thanks and a whole range of ego needs that the · McLean, Athena. (1991). "Contradictions club, if really operating as a consumer club, may in the Concept of 'Empowerment': A Study of One not provide. The issue is not whether staff and Consumer-Run Drop-In Center". Presented at the director are consumers, but whether they can avoid 90th Annual Meeting of the American the· seduction of the "system" and remain honestly Anthropological Association. Chicago. pp.1-15.

27 Lourde, Audre. (1984). "The. when applied to addressing the situations ofpeople Transformation of Silence into Language and labeled seriously mentally ill. This structural Action". Sister Outsid~r. Trumansburg, N.Y.: ambivalence can be framed.very easily: Who does Crossing Press .. case management represent? Is it "system-driven," with a mission based on promoting systems LLyn De Danaan, Ph.D is professor of outcomes, or is it "client-driven," with a mission anthropology at. The Evergreen State College, prioritizing the wants and ends of consumers? Olympia, Washington 98505. Her research For many case managers, this ambivalence interests include gender and psychiatric disability. is built into their jobs and it becomes a potential She is active hi disability organizations, cross- source of tension as well as conflict of interest. cultural and educational reform, and initiatives to Their structural location within mental health protect and extend equal rights. systems can easily create an ethical dilemma of "mixed loyalties," and true accountability can become obscured by the absence of clear role Wants Versus Needs: Finding An definitions and specification of ultimate Alternative To Case Management• commitments (Dill, 1987; Mechanic, 1987). In

( many situations, case managers represent a system By Paul P. Freddolino, Ph.D. trying to manage recipients rather than an effort to and assist consumers to manage a system of services, David P. Moxley, Ph.D. benefits, and opportunities tailored to what the consumer desires. It is not surprising, the~fore, Despite its ubiquity an:d popularity in the that the research on the application of case human services, case management suffers from management to community support of people with some profound structural limitations, especially in serious melital illness may produce mixed results. its application to ·people labeled as seriously Often what is being measured as a model of case mentally ill. Although this approach to human management is not clear, and the actual mission services has proven its effectiveness in various undertaken through case management is service situations, the jury remains out on its overlooked. effectiveness. in serving and supporting people There is a new class of case management labeled seriously mentally ill (Moxley, 1992). There models emerging which are addressing this is evidence that case management does indeed dilemma by adopting more "client-driven" make a positive impact on the functioning and perspectives. Rose's (1992) model, for example, is well-being of people coping with long-term committed to organizing case management delivery psychiatric problems ( Goering, Wasylenki, Farkas, around the desires and ends of the consumer while and Ballantyne, 1988) while other evidence, based Kisthardt and Rapp's (1992) approach to case on true experimental designs, shows that case management ·emphasizes the mobilization of a management incre~s the utilization o( services-- person's and a community's strengths to meet including hospital· care--without enhancing the needs as consumers define them, not as the system quality of life ·of recipients (Franklin, Solovitz, defines them. · These progressive models of case Mason, Oemons, and Miller, 1987). management appear to be built . on powerful Yet whether or not case management is premises. First, support of a person coping with a effective is merely one element of considering the serious. disability cannot be translated merely into worth and merit of this approach to human service services (Moxley, 1989). Supports must be broadly practice. One structural problem is that the defined and their identification and mobilization success of case management often is measured in must extend beyond the mental health system into terms of benefits that case management practices other organized systems of human services as well accrue to the mental health system, such as as into the general community. Second, the reducing utilization, creating efficiencies, and primacy of the person is of higher value than the channeling people into service systems. But this primacy of the system, and the purpose of the· case problem itself only reflects a more serious management relationship is to communicate this structural dilemma. There is a major structural primacy. Third, the perspectives of the consumer ambivalence to many models. of case management must drive the purpose and actMties of case

28 management. their own progress. It is this third premise which shifts case CSR does not assume that people coping management from addressing "needs" as with long term psychiatric disabilities require professionals and mental health systems define formal services in order to meet their needs. It them, to a focus on "wants" as consumers ·define does assume that people who are labeled as them (Moxley and Freddolino, 1990). This, from seriously mentally ill do require dedicated support our perspective, is the crux of assisting people in resolving the many environmental challenges labeled as seriously mentally ill to heal themselves. they experience (Freddolino, Moxley, and By virtue · of the nature of "mental illness," Fleishman, 1989). CSR is designed as an advocacy especially the social reaction to it, people coping intervention intended to assist participants in with serious mental illness can experience profound defining their community living problems, in loss of control over their personhood expressed in identifying self-help goals, in promoting active what is often considered, from a -· medical client involvement in addressing and resolving perspective, to be secondary or "negative these problems, in supporting clients' own attempts symptoms" such as loss of motivation, helplessness, to resolve their problems, in providing a full range and aimlessness. of advocacy representation in mediation and From our perspective the process of negotiation when a client requests such advocacy, restoring health begins with the critical element of and in monitoring and evaluating results (Moxley control. Helping people labeled as seriously and Freddolino, 1990). The most important mentally ill to exercise control over themselves and element of CSR is that it offers consumers an their environments is the crucial element, and it is opportunity to develop perspective on the this control which ultimately may be the most environmental challenges they face and to define important source of self-healing. Healing begins how they want to resolve these challenges. with the structure of the helping process, CSR· has several important differences something which is often overlooked by from traditional rights protection and advocacy contemporary case management approaches. It is practice, and even · from the more recently this structure which must put choice, control, and. established services provided by the federally- self-direction into the hands of people who often funded Protection and Advocacy for Individuals fee~. the sting of. stigma, societal rejection, and with Mental Illness (PAIMI) programs (Freddolino discrimination. To do so successfully, from our and Moxley, 1988). CSR is proactive in that perspective, requires the case manager to resolve advocates initiate contacts with all clients who the structural dilemma of "mixed loyalties" and to reside in a given geographic or programmatic unit, enjoy the freedom of serving as an advocate of or who are at a designated stage in the service client-defined perspectives and choices. The delivery process--e.g., two weeks before discharge. ultimate value of an intervention lies in its Thus, the foundation of CSR is proactive outreach acceptability to the consumer ·(Moxley and and engagement offered in a manner which Freddolino, 1991). From our perspective, promotes information about the availability of the contemporary case management must capture this service but which respects the individual's right to quality ·of acceptability if it is ultimately to be decline the offer of advocacy. successful and relevant. CSR services, therefore, are offered to a Client Support and Representation broad range of potential clients, not to a smaller Client Support and Representation (CSR) set of people who have the resources, capabilities, was founded as a model to address the system or knowledge to initiate contact with any advocacy biases inherent in contemporary approaches to the program. This outreach approach permits CSR to community management of people labeled as be offered even to those individuals who would not seriously mentally ill. Although CSR focuses on initially define themselves as having any "needs" for addressing the diminished status of people with assistance. Finally, unlike many advocacy programs serious mental illness within our society, the CSR need not focus on substantive legal issues. diagnosis, illness, or mental health labels of mental CSR differs from traditional case health practice are not employed as a framework management in that it is not concerned with within which healing occurs unless CSR consumers people's status as "mental patients" but rather with want to address these constructs as impediments to their status as citizens with rights, and as people

29 who require benefits, opportunities, and resources project was a private nonprofit legal advocacy to fulfill these rights and obligations as citizens. agency with· independence from the mental health CSR advocates are not concerned with the clinical system yet a good working relationship with the treatment plans established for clients, but rather system. CSR advocates were trained human with the positive resolution of client-defined and service professionals but did not possess formal prioritized problems and issues, wishes, and desires. legal training before joining the project. All Consequently, CSR advocates will fulfill such expressed an interest in working in a role where common case management . roles as service clients ultimately ·defined and prescribed the coordinator and broker only when their clients workers' activities. Thus, unlike many traditional request such assistance. · case management programs, CSR advocates knew Primary direct helping roles of advocates their mission, roles, and activities. They supported involve teaching, coaching, and mentoring their and represented clients and did not have to assume clients toward the. resolution of their problems. the perspectives -- or address the needs -- of the Primary indirect helping roles involve negotiation mental health system. and mediation with third parties and formal . The CSR Field Experiment administrative representation at the request of the CSR has been evaluated in a randomized client. CSR and more traditional case field experiment funded by the National Institute management can differ in how each defines for Mental Health.· The experiment involved advocacy. Case management is more likely to participants with long-term psychiatric disabilities advocate for service utilization while CSR advocacy similar to the types of people served by community is more likely to be defined in broader terms as mental health systems. These individuals were helping · clients to reduce those barriers that considered to be seriously mentally ill, with interfere with people achieving what they want for diagnostic labels like schizophrenia and bipolar themselves. Perhaps the ultimate difference can be disorder. seen in the fact that everything done under the We found that when people coping with aegis of CSR is determined by the consumer/client. long term psychiatric problems receive CSR they 1) The Process of Client Support and define their problems, needs, and wishes in very Representation practical terms, usually emphasizing issues involving CSR intervention begins with a detailed · housing, employment, health care, and income; 2) needs assessment framed from the perspective of have very good success _in resolving these problems; ··the consumer in which participants defme the and 3) reduce their use of mental health services problems or issu~s they will pursue with the including hospitalization without a concomitant support of their advocate in such areas as housing, increase in psychiatric symptomatology benefits,_employment and training, and legal issues. (Freddolino, et al., 1989). Preliminary data analysis Regular mental health services are not controlled suggests that CSR may make. people less by the CSR advocates, and no attempt is made to dependent on the formal mental health system in coordinate services with a treatment plan or with part because CSR advocates are more likely to mental health providers. Other key elements of support clients' search for nonservice solutions to the model include supporting participants to do as their problems. much as possible on their own, to foster the sense CSR, from our perspective, is very of accomplishment and control; maintaining. consistent with the client-driven mission of contact with the client on a weekly basis even when psychosocial rehabilitation and, therefore, CSR and no problems . are identified, offering friendly rehabilitation case management may complement visiting; and ensuring sufficient independence for one another. Both interventions seek to use the CSR program so that neither the program nor existing client competencies to the fullest while individual advocates are "at risk" of conflict of assisting clients in developing new ones, based on interest.· choice· and prioritization by the consumer. In The structural location of CSR is addition, both interventions seek to reduce important especially in light of the issue of mixed environmental factors which may erect barriers to loyalties. . CSR was implemented outside of the clients' fulfilling their needs. Finally, both mental health system in its original field . approaches recognize the very important role of a demonstration. The organizational home for the supportive relationship between helper and

30 consumer which is characterized by equality, may be very appropriate for people whose trust in reciprocity, and mutuality. the mental health system is low but who, Shifting from Professional to Peer Advocates nonetheless, want support and assistance. Because Although none of the people who worked ofits organizational independence from the mental as CSR advocates identified themselves as people health system, CSR may also be appropriate for who had been labeled mentally ill, there is nothing individuals who are difficult to engage in support in the job description for the role that precludes and who dislike traditional approaches to service, this possibility. In fact, in the context of such as people who are homeless and labeled as contemporary self-help, peer advocacy -- based on mentally ill (Freddolino and Moxley, 1992). CSR principles -- may facilitate the characteristics Finally, looking to the future, the CSR of self-determination, personal control, and client- model may provide an approach for defined goals salient in this model of advocacy. operationalizing the concept of "personal Consumers/survivors may do a better job than assistance" for people ,abeled mentally m~ ·The professionals at eliciting from CSR participants fundamental principle of CSR -- that clients more detailed information about their needs, determine all aspects of what CSR staff will do -- problems, and desires. In addition, consumers as seems to be fully consistent with the notion of a advocates may be better able to connect individual personal care assistant as an employee of a person level advocacy to systems and class forms of who is coping with psychiatric problems. This advocacy through larger scale self-help efforts approach may identify a new direction for CSR, which are consistent with the ~If-defined aims of especially as a new generation of supports and· consumers as an organized group. opportunities is encouraged by the implementation Conclusion of the American with Disabilities Act (West, 1991 ). The healing process in serious mental A civil rights perspective inay encourage human illness may be · inherently broad, encompassing services to move in the direction of addressing health, social, and psychological supports. wants rather than defining needs. The success of However, "managing" people through case supports for true self-healing may require such a management may only result in heightened radical yet simple change in the way we offer dependencies, loss · of motivation, and the assistance to. people. reinforcement of a damaged identity. Conceiving of case management within the context of system- defined needs overlooks the reality that client- Note: Additional information about the CSR defined needs may be quite different from those model can be obtained from Paul P. Freddolino, defmed by the mental health system, or even in Ph. D., School of Social Work, Michigan State conflict with system-defined priorities. Which University, 254 Baker Hall, East Lansing, MI perspective should prevail? Is this a false 48824. dichotomy? We see a very important need for *The research described here was supported by approaches which prioritize the perspectives and Grant #MH37051 from the National Institute of ends of consumers themselves. We are not Mental Health. The authors wish to thank Jean proposing that CSR be used as a global substitute Campbell for her helpful comments on an earlier for case management. The latter -- even in its draft of this paper. Finally we wish to thank newest versions -- may be most productive when Teresa Nelson, JD, and the staff and clients of the targeted on the most at risk and vulnerable people CSR Project who made this experiment real. coping with long term disabilities -- especially individuals requiring an array of human services that must be integrated and coordinated References (Benjamin, 1988; Moxley, 1989; Moxley, in press). CSR may be most useful when clients with some Benjamin, A. E. (1988). Long-term care and AIDS: strong competencies in place are seeking to make Perspectives from experience with the a transition from dependence on the mental health elderly. The Milbank Quarterly, 66(3), 415- system, but nonetheless still want some support for 443. their problem-solving efforts. In addition, CSR Dill, A. (1987). Issues in case management for the

31 chronically mentally ill. In D. Mechanic 103. · (Ed.), Improving Mental Health Services: Moxley, D. (in press). An agenda for case What the Social Sciences Can Tell Us (pp. management program development: 61-70). San Francisco: Jossey-Bass. Implications for outpatient health care. In Franklin, J. L., Solovitz, B., Mason, M., Cemons, M. Donovan & T. Matson (Eds.), J., & Miller, G. (1987)~ An evaluation of . Outpatient Case Management:A Framework case management. American Joumaf of for Health Care Deli.very. Chicago: Public Health, 77, 674-678. American Hospital Publishing. Freddolino, P., & Moxley, D. (1988). The states's Rose, S. M. (1992). Case management: An role in fine tuning the new federal advocacy/empowerment design. In S. M. mandate for rights protection and Rose (Eds.), Case Management and Social advocacy for· people labelled mentally ill. Work Practice (pp. 271-297). New York: New England Journal of Hwnan Services, Longman. 8(2), 27-33. West, J. (1991). The Americans with DisabilitiesAct: Freddolino, P., Moxley, D., & Fleishman, J. (1989). From policy to. practice. . New York: An advocacy model of people with long- Milbank Memorial Fund. term psychiatric disabilities. Hospital and Community Psychiatry, 40(11), 1169-1174. Freddolino, P., & Moxley, D. (1992). Refining an advocacy model for homeless people coping with psychiatric disabilities. Community MentalHealthloumal, 28, 337- 352. Goering, P., Wasylenki, D., Farkas, M., & Role of Support Personnel in Ballantyne, R. (1988).. What difference Rehabilitation... Researchers at the University ~f does.case management make? Hospital and Alberta, Faculty of Rehabilitation Medicine, are · Community Psychiatry, 39(3), 272-276. working on a national study of the role and use of Kisthardt, W. E., & Rapp, C~ A. (1992). Bridging support personnel in the rehabilitation disciplines the gap between principles and practice: in educational and. health care facilities, now and in Implementing a .strengths perspective in the future. The multi-phased project is almost case management. In S. M. Rose (Ed.), complete; with the final report due December 31, Case Management and Social Work Practice 1992.. For further information, please contact (pp. 112-125). New York: Longman. Jacqui~ Forward, Project Coordinator, Department Mechanic, D. (1987). Correcting misconceptions in of Speech Pathology and Audiology, University of mental health policy: Strategies for Alberta, Room 2-70 Corbett. Hall, Edmonton, improved care of the seriously mentally ill. Alberta T6G 204. Phone: (403) 492-0835. . The Milbank Quarterly, 65(2), _203-230. Moxley, D. (1989). The Practice of Case Management in the· Hwnan Services. Takin~ Charge of Psychotropic Drup Newbury, CA: Sage. Moxley, D.; & Freddolino, P. (1990). A model of by Peter Stastny, M.D. advocacy for promoting client self- . determination in psychosocial Millions of people take psychotropic drugs rehabilitation. Psychosocial. Rehabilitation for "mental illnesses• on the recommendation of Joumal, 14(2), 69-82. psychiatrists. However, the debate about the value Moxley, D., & Freddolino, P. (1991). The needs of ofthese drugs continues. Much ·evidence for their homeless -people coping with· psychiatric toxic, oft.en ·irreversible and disabling effects has disabilities: Findings from an innovative been provided · (Breggin, 1988; Lehmann, 1989; advocacy project. Health and Social Work, Keshavan & Kennedy, 1992; Kane & Liebennan, 16(1), 19-26. 1992). Consumers of psychotropic drugs report Moxley, D. (1992). Disability policy and social work considerably greater distress from the side-effects practice.!fealth and Social Work, 17(2), 99- of these drugs than mental health professionals

32 (Campbell and Schraiber, 1989). Mainstream take psychotropic drugs regularly are not aware of psychiatry, on the ·other hand, emphasizes their their long-term: risks, including tardive dyskinesia beneficial effects·. on the course and outcome of (McPherson, 1993). most psychiatric disorders (e.g. Torrey, 1983). Risks: Anyone trying to decide whether to take these It is a legal requirement for prescribing drugs is caught between these perspectives and left physicians to obtain "informed consent" from any without straightforward answers. To continue patient about to enter treatment or undergo a taking psychiatric medication after becoming aware medical procedure. This means that the physician of their toxicity could be seen as acting in a self- must disclose all relevant information and assure destructive fashion. To heed the warnings leaves that the patient appreciates the risk-benefit the impossible .choice between relapse and. drug- relationship for each drug or combination of drugs induced dysfunction. (see Lidz et al., 1984). In psychiatry, this In spite of this intractable dilemma, a requirement is far from universally accepted (Hoge significant proportion of persons who advocate and Appelbaum, 1992). The impact of such against psychiatric abuse and for empowerment of disclosure can be quite dramatic, predicting an up survivors continue to . take antidepressants, to 100% chance of suffering side-effects at some neuroleptics, "mood stabilizers" and other point. These range from mild, barely noticeable psychiatric drugs. To suggest that they are making tardive dyskinesia, to severe, disfiguring movement self-destructive choices means stripping them of disorders and death by choking, heart attack, the right to treat their bodies and minds the way kidney failure and suicide. Qearly, more serious they choose. · side effects are rarer than less serious ones, In my work I consulted with numerous requiring · a risk assessment not . unlike those individuals struggling with this problem. My main associated with invasive medical procedures. In philosophy was to support them in their decisions psychotropic drugs however, the risk-benefit ratio regarding these substances, while . searching for is considerably more complicated than in other non-pharmacological avenues toward recovery and medical procedures. People are frequently ·empowerment. This has not been a smooth road. _confronted with a choice of taking drugs "for the Many painful compromises were made, at times rest of their life." This is rather rare among· leading to greater self-fulfillment, at times to medical treatments. Furthermore, to decide taking greater suffering. Nevertheless I have been a drug designed to have major effects on thinking, · affirmed in my conviction that "consumer-control" feeling and interpersonal relations, may merit a in all aspects of psychiatric treatment is the key to different assessment than other types of medical success. The physician's role in psychiatry should procedures. never go beyond giving sound medical advice and It goes beyond the scope of this paper to support, while providing objective feedback about even outline the seemingly interminable list of a person's health. ubiquitous, coI11IDon and rarer side-effects encountered with psychotropic medications. The Informed Consent reader is referred to a voluminous literature, The right to make decisions about taking including some recent comprehensive works cited psychiatric drugs implies that such choices are earlier (Kane & Lieberman; Keshavan & made based on adequate information alx:>Ut all Kennedy). Here I merely emphasize some of the adverse and intended effects of these drugs. lesser known, but wide-spread negative effects of Individuals who take psychotropic drugs are quite these drugs. For example, it has become clear that · familiar with the effects on their bodies and minds. the majority of persons receiving neuroleptics are While they may not appreciate the full extent of still benefiting from brain development. toxic effects that may occur in the future, they Weinberger, et al. (1987) summarized this research experience current effects more acutely than and the potentially detrimental effects of anyone else. With access to laboratory data, they neuroleptics on the frontal lobe-limbic system could also familiarize themselves with those side- connections. These reports lend credence to effects that are not perceptible (i.e. lower blood statements about "lobotomizing" effects of these cell counts, subtle changes in liver enzymes, and drugs, interfering with a persons ability · to thyroid function). Nevertheless, most persons who experience emotions, take charge of their life and

33 develop their personal identity (Martenson, 1988). their right to refuse· psychotropics is inalienable While there are extensive reports on drug- and should never be compromised (e.g. Thompson, induced sexual dysfunction in men, women have 1992). Those few who report positive results from received much less attention, even though its being coerced have the option of making advance prevalence among them (25-30%) is considerable provisions for future treatment through "health (Sullivan and Lukoff, 1990). Women are more at proxies" or .•living wills" (Rogers and Centifanti, risk for tardive dyskinesia, ,especially if they are 1991; Rosenson and Kasten, 1991). In my older (American Psychiatric Association, 1992). experience at a major state psychiatric institution, Older. individuals, particularly nursing home· I found that outside clinical review could lead to · residents, suffer from polypharmacy and persistent non-coercive alternatives in all applications for high dosages, contributing to a shortening of th~ir court-order to medicate over objection. life-expectancy (Peabody, et al., 1987): In addition to the research findings often Toxicity and therapeutic dose ranges are supported by the pharmaceutical 'industry I suggest also different across ethnic groups (Lin, et al., that each person should consider their personal 1986). For example, the incidence of experience when making such a decision. Most extrapyramidal side-effects from neuroleptics is mental health professionals recommend much ·higher among ·Asian-Americans than maintenance drug regimes for virtually all major Caucasian and Black controls (Binder and Levy, psychiatric problems. This is partially due to the 1981). fact, that the search for ·successful therapies in Benefits: psychiatry seems somehow limited by In spite of this overwhelming evidence and psychopharmacological "tunnel-vision". Less toxic personaf experience with ·side-effects of interventions are not included in· the research psychotropic drugs, a considerable number of agenda (NJ.M.H., 1992a). Therefore, each person informed consumers opt for taking them regularly should carefully monitor medication effects to or intermittently. Some of their reasons are: fear of evaluate any positive and negative results. relapse, overcompliance with .doctor's orders Research findings should be subjected to a (Lesser and Freedman, 1980), a reduction of rigorous review by everyone offered psychotropic distressing and destructive thoughts and medications. perceptions, and the prevention of outside forceful intervention. While this position . receives Less Toxic Alternatives enthusiastic support from the psychiatric field and The concept of the •1east toxic alternative" family advocates, very few consumers embrace their (Campbell, · 1993) · suggests a hierarchy of ·medication without .reservation (Gelman, 1993). treatments ranging from the completely harmless Only 12% of consumers in Campbell and to massive toxicity~ It includes non- Schraiber's (1989) study reported being free of pharmacologicalandpharmacologicalinterventions, side-effects. which should be tried in an ascending order of harmfulness. This goes along with the Hippocratic Freedom to Choose principle of "primum non nocere" - first. do no The consumer's right to refuse and the harm . .freedom .to choose psychotropic medications are Early Prevention of :Qrug-lnduced certainly the t;wo·most hotly debated issues in this Problems field. In spite of efforts conducted by N.I.M.H. we An important and· neglected issue is the are far from achieving consensus in this area use of drugs during the initial "onset of symptoms." (N.I.M.H., 1992). Legally, the right to refuse ·has. The first experience of altered states of mind or been firmly established for persons deemed serious conflict, tension, questions about life and competent (Appelbaum, 1988). However, the right oneself, often leads down irreversible career paths to make affirmative choices about treatment of mental patients. Damage is inflicted almost options, including psychotropic regimes, has not immediately when a person seeks help from been ·granted. It has been demonstrated that a psychiatry. Not only does the usual positive subjective response to the type and dosage psychopharmacological response suppress attempts of a drug predicts better long-term outcome (Van to understand one's difficulties and fmd ways to Putten, et al., 1984). Most consumers feel that solve problems, it forces the person to enter a

34 course shaped by the dilemma of drugs versus no After a prolonged honeymoon, mood~ drugs. Much damage can be prevented·early on by stabilizing drugs, in particular Lithium have using psychotherapeutic and psychosocial become under increasing scrutiny (Breggin, 1988). · alternatives ( Ciompi, 1987). They were initially viewed as a relatively benign Non-Pharmacological Alternatives method to relieve and prevent mood disturbances. Successful avoidance of psychotropics Some consumers still feel that they have less depends on the availability and suitability of debilitating effects than neuroleptics. alternate medical and non-medical methods of Recently there has been considerable healing. Meditation, relaxation techniques, publicity about Oozaril, which is being marketed as vitamins and other nutrients, acupuncture, a "safe" drug for "non-responders" (Time, 1992). homeopathy, cognitive rehabilitation and While this drug may indeed not cause tardive interpersonal therapies have largely been neglected dyskinesia or other neuromuscular side-effects, it by the endorsers of the medical model, but may has other, some· times lethal side effects. While offer. alternatives to traditional prescribing there are a f~ European long-term studies practices, while providing much sought relief of showing advantages over other neuroleptics, symptoms. In addition, such "holistic" approaches "miraculous" responses claimed by some U.S. offer a non-medical framework for interpreting psychiatrists are exceedingly rare (Kane, 1992). altered states of the mind. Intermittent and 1.nw-Dose Regimes Soteria House was the best-known non- For those who cannot avoid psychotropics, there medical alternative to hospitalization (Mosher and are a number of ways to minimize their risk. Menn, 1979). It showed that persons can be Intermittent use is advocated by some psychiatrists supported through extreme emotional crises with (e.g. Herz, 1982), recommending that persons favorable outcome and minimal use of utilize their subjective 11prodromal (warning) signs" psychotropics. The replication of this model has to ward off a full blown "psychotic episode". Early been thwarted by the psychiatric and insurance intervention and short-term use may prevent long- field (Mosher and Menn, 1983). term dependency on these drugs (Hirsch, 1987). .The Windhorse Project, descn'bed by Another alternative is the ongoing ingestion of Podvoll (1990), has shown highly promising results neureleptics at the lowest effective dosage. Those applying a Buddhist healing philosophy, while who have attempted to detoxify from these drugs helping people wean themselves off psychotropics. only to experience an uncontrollable resurgence of Other examples of comprehensive non-medical distressing or unproductive thoughts and alternatives include Birch House in Massachusetts perceptions, might choose to remain on these and the Arbor Society in London, England, both drugs, in spite of their proven toxicity. In that case based on a Laingian "antipsychiatry" model. it is essential to ascertain the lowest possible Self-help and self-rehabilitation have dosage which averts withdrawal .or other emergent emerged as important avenues for recovery within ·symptoms. This could be as low as 0.5mg and outside the mental health system. Haloperidol or 10 mg chlorpromazine per day. Unfortunately, there are no studies assessing the The impact ofvery low dosages is similar and often effectiveness of self-help methods as alternatives to better than the popular moderate to high dosages, psychotropics. Such studies are long overdue1 which damaged three generations of given the rapid expansion of the consumer/survivor institutionalized persons (Rifkin and ,Kane, 1983). movement. A forthcoming book edited -by Peter Drug Dependency and Withdrawal Lehmann (1993) will outline a range of anti- On "maintenance medication" the choices psychiatric practices. are considerably more limited. A form of uss Toxic Drugs. dependency develops, fostered by prescribing Recent research shows that certain drugs, physicians. This makes cessation virtually such as benzodiazepines, may provide better short impossible. In clinical practice, reemergence of term alternatives with less toxicity even for distressing "symptoms" is generally seen as proof "psychotic" symptoms (Neppe, 1989). The fear of for the ongoing need for drugs, rather than an addiction may be less warranted when compared effect of withdrawal. An irreversible with the side-effects of neuroleptics and mood- transformation of brain receptors has set in, which stabilizing drugs. compounds the original problem.

35 Based on clinical experience I recommend develop a greater understanding of the irrational that everyone, no matter how late in their course, use of drugs in various cultures, as recommended be given the opportunity to withdraw from by the International Network for the Rational Use ·psychotropic drugs. Effects of such withdrawal of Drugs (Ross-Degnan, et al., 1992). Economic could~be evaluated. Benefits and problems should strategies, such as "making those who hold power be documented. This process is complicated and in the decision process accountable for the its success depends on many largely unknown unwanted risks they impose", might cause a radical factors. The life-time and daily dosage of shift in psychotrop~c prescribing practices (Cohen neuroleptic may effect the likely success of and McCubbin, 1990). Combined with a major withdrawal and subsequent control of psychotic effort to disseminate proven non-pharmacological symptoms (l.Dhr, 1992). In other words, having alternatives, these approaches would surely lead to taken .more drugs, may make it more difficult tci a better system of care. withdraw. This could relat~ to the same drug- induced "supersensitivity" at the synaptic level Conclusions: which is thought to cause tardive dyskinesia. Some 1. Major emphasis must placed on researchers suggest that this supersensitivity developing and evaluating non-toxic alternative induces a "withdrawal psychosis" upon therapies useful to the majority of persons discontinuation of neuroleptics (Chouinard, 1978; suffering from psychiatric disabilities. · Meyerhoff & Lieberman, 1992). Rate. and speed 2. This is particularly important during the of drug withdrawal is also an. important variable. early phases of the problem, when significant drug- "Dr. Caligari" (Richman, 1984) proposes a V

36 TreatmentwithAntipsychoticMedications: the Treatment of Schizophrenia. In: Jean- Retrospect and Prospect. American Pierre Lindenmayer and Stanley Kay. Journal of Psychiatry. (145:4). pp. 413-419. (Eds~) New Biological Vistas on Breggin, Peter R.. (1983). · Psychiatric Drugs, Schizophrenia. New York: Brunner Mazel. Hazards to the Brain. · Springer, New Kane, John and Lieberman, Jeffrey ( eds.). (1992) York.- Adverse Effects of Psychotropic Drugs. Campbell, Jean. (1993). Personal Communication. The Guilford Press, New York and Campbell, Jean and Ron Schraiber. (1989). The London. - Well-Being Project: Mental Health Clients Keshavan, -M.S. and Kennedy, J.S. (eds.) (1992) Speak· for Themselves. Sacramento, CA: Drug-Induced Dysfunction in Psychiatry. California Department of Mental Health. Hemisphere Publishing Corp., New York, pp. 159-162. Washington, Philadelphia and London. Chouinard, G., Jones, B.D., Annable, L. (1978). Lehmann, Peter (1989) Der Chemische Knebel Neuroleptic-Induced Supersensitivity (The Chemical Gag). Berlin: Psychosis. American Journal of Psychiatry. Antipsychiatrie-Verlag. 135:1409-1410. . Lehmann, Peter (Ed.). (1993). The Chemical Gag: Ciompi, Luc. (1987). Toward a Coherent Antipsychiatric Practice. In Press. Berlin: Multidimensional Understanding and, Antipsychiatrie-Verlag. Therapy of Schizophrenia: Converging' Lesser, Ira M. and Claude T.H. Freedmann. New Concepts. In: Strauss, John S.j (1980). Attitudes toward Wolfgang Boeker and Hans D. Brenner. Medication Change Among Chronically (eds.). (1987). Psychosocial Treatment of Impaired Psychiatric Patients. American Schizophrenia. Toronto, Lewiston, N.Y., Journal of Psychiatry. (138:6). pp. 801-803. Bern & Stuttgart: Hans Huber Publishers, Lidz, Charles W ., Alan Meisel, Eviatar Zerubavel, pp. 48-62. Mary Carter, Regina M. Sestak, and Loren Cohen, David and Michael McCubbin. (1990). The H. Roth.(1984). Informed Consent - A Political Economy of Tardive ·Dyskinesia: Study of Decisionmaking in Psychiatry. Assymetries in Power and Responsibility. New York and London: The Guilford The Journal of Mind and Behavior. (11:3- Press. 4). pp. 465-488. Lohr, James B. (1992) Tardive Dyskinesia. In: Fisher, Daniel B. (1992). A New Vision of Healing: Keshavan & Kennedy (1992) ibid. p. 78- A Reasonable Accommodation for 90: Consumer/Survivors Working as Mental Martenson, Lars (1988) Should Neuroleptic Drugs Health Providers. In: NIDRR Consensus Be Banned? Distributed by Alice M. Earl, Validation Conference,Arlington, Virginia. Psychiatric Survivors of Western Mass., Gelman, Dick. (1993). Personal Communication. P.O. Box 60845, Longmeadow, MA 01116. Herz, M.I., Szymanski, H.E. and Simon, J.C. (1982) Mayerhoff, David I. and Lieberman, Jeffrey A. Intermittent Medication for Stable (1992) Behavioral Effects of Neuroleptics. Schizophrenic Outpatients: An Alternative In: Kane & Lieberman (1992), ibid. pp. · to Maintenance Medication. American 133-135. . Journal of Psychiatry, 139, 918-922. McPherson, Robert, Duncan Double, R. Paul Hirsch, S.R., A.G. Jolley, R. Manchanda and A. Rowlands and Denise Harrison. (1993) McRink. (1987). Early Intervention Long-Term Psychiatric Patients' Medication as an Alternative to Understanding of Neuroleptic Medication. Continuous Depot Treatment in Hospital and Community Psychiatry. 44:1, Schizophrenia: Preliminary ·Report. In: 71-73. - Strauss, John, et al. (1987r Ibid., pp. 63- Mosher, Loren and Alma Z. Menn (1979) Soteria: 72. An Alternative to Hospitalization for Hoge~ S.K. and Appelbaum, P.S. (1992) The Role Schizo~hrenia. In: H.R. Lamb (ed.) New of Informed Consent in Psychopharmaco- Directions for Mental Health -Services - logy. In: Kane and Liberman ( eds.) ibid. Alternatives to Acute Hospitalization. San Kane~ John D. (1992). Atypical Neuroleptics for Francisco: Jossey-Bass.

37 Mosher, Loren R. and Alma Z. Menn .. (1983). Low-Dose Neuroleptic Maintenance Scientific Evidence and System Chage: The Treatment of Schizophrenia. In: Kane, Soteria Experience. In: H. Stierlin, L. John M. . (ed.) Drug Maintenance Wynne and M. Wirsching ·(Eds.). Strategies in Schizophrenia. American Psychosocial Interventions in ·Psychiatric Association Press, Washington, Schizophrenia.. Heidelberg: Springer .D.C. . Verlag. Rogers,· Joseph A. and J. Benedict Centifanti. Neppe, Vernon M. (ed.) (1989) Innovative (1991). Beyond •self-Paternalism": Psychopharmacotherapy, Raven New Response to Rosenson and Kasten. York, p. 78-80. ·Schizophrenia Bulletin. (17:1). pp. 9-13. N.I.M.H. (1992) Use of Involuntary Interventions: Rosenson, Marylin K. and Agnes Marie Kasten. Perspectives of ·Family Members and . (1991). Another View of Autonomy: Psychiatrists. Report of Meeting.. Arranging for Consent in Advance. September 20-21, 1991. Bethesda, Schizophrenia Bulletin. (17:1). pp. 1-8. . Maryland. Thompson, Ron (1992) Personal Communication. N.I.M.H. (1992a) Severe Mental Disorders:· A· Time (1992) Time Magazine, October, 1992. National Plan to Improve Services - Torrey, E. Fuller. (1983). Surviving Schizophrenia: Clinical Services Research. Schizophrenia A Family Manual. Harper & Row, New Bulletin. (18:4). pp. 561-592. York. Peabody, C.A., D. Warner and H.A. Whiteford. Van Putten, Theodore, Philip R.A. · May and (1987). Neuroleptic and the Elderly. Stephen R. Marder. (1984) Journal of the American Geriatric Society.· ·Response to Antipsychotic Medication: (35). pp. 233-238. The Doctor's and the Consumer's View. Podvoll, Edward M. (1990) The Seduction of American Journal of Psychiatry. (141:1). Madness. Harper Collins, .New York, p. pp. 16-19. 227-237. Weinberger, Daniel (1987) The Role of the· Richman, David (1984) Dr~ Caligari's Psychiatric· Normal Brain in The Pathogenesis of Drugs. Berkeley, California, private Schizophrenia. ' Archives of General ptj_nting. ' Psychiatry. (46). pp.660-669. Ross-Degnan, Dennis, Richard Laing, Jonathan Quick, Hassan Mohammed Ali, David Ofori-Adjei, Lateef Salako and Budiono Quality of Ufe Santoso. (1992). A Strategy for Promoting Outcome Measures for Improved Pharmaceutical Use: The Three Case Management Models: International Network for Rational Use of Psychiatric Rehabilitation, Broker, and Drugs~ Social Science and Medicine. Traditional". (35:11). pp. 1329-1341. Stastny, Peter. (1993). Turning the Tables - About by Ruth 0. Ralph, Ph.D., the Relationship Between Psy~hiatry and Bruce B. Cary, Ph.D., the Ex-Patient Movement. Community Psychiatrist. (7:1). Quality of life has become a way to Strauss, John S., C.M. Harding, H. Hafez, P. conceptualize a person's well-being (Lehman, Lieberman. (1987). The Role of the 1988). It is defined in a variety of ways, but most Patient in. Recovery from Psychosis. In: often includes variables that relate to a person's. ·Strauss, Boeker and Brenner (Eds.) .ibid. living situation, family and social relations, work pp. 160-166. environment, leisure time, health status and Sullivan, Greer and David Lukoff (1990). Sexual personal safety. (Zautra and Goodhart, 1979). "At Side Effects of Antipsychotic · a minimum 'quality of life' covers persons' sense of Medication: Evaluation and Interventions. well-being; often it also includes how they are Hospital and Community Psychiatry. doing (functional status) and what they have (41:11). pp. 1238-1241. . ·(access to resources and opportunities)." (Lehman, Rifkin, Arthur, and John Kane. (1983). 1991).

38 In the Well-Being Project, mental ·health increase . my satisfaction with my social clients, through their responses to self-developed relationships?" questions defined well-being ( quality of life) as The amount of empirical research on this follows: construct within the field of mental health is Mental health clients reported limited. Most focuses on development and that their well-being is dependent validation of instrumentation, especially the on having good health, good differences between subjective and objective food, and a decent place to live. indicators of quality of life (Lehman, 1988). Less They aspire to lives supported by emphasis is given to the use of the concept as a adequate income earned through potential outcome measurement in program meaningful work. Their well0 evaluation (Bigelow, et.al., 1982). being requires that basic human This paper examines quality of life as an freedoms, such as· choice, safety, outcome measure in a quasi-experimental study of and privacy, are protected. the efficacy of alternative case management · Clients expressed needs for models. Three types of case management are

adequate resources and a studied: Broker9 Rehabilitation, and Traditional. satisfying social life in order to The Broker Model is based upon the concept that sustain and fulfill desires for the case manager is the service coordinator, with comfort and intimacy. They said the overall responsibility to assist her/his clients to that the quality of their everyday negotiate for services .that the client wants and lives would be enriched by needs. In the Rehabilitation Model, the case creativity' satisfying sexual and manager's overall responsibility is to increase the spiritual lives, and happiness. functioning of her/his clients so that the client can . (Campbell & Schraiber, 1989, be both personally satisfied and successful in the p.67) residential, vocational, educational, and/or social environment of her/his choice. Improvement in The improvement in a client's quality of quality of life is a central goal. The control life is an important goal of mental health services. condition, or the Traditional approach, emphasizes The purpose of the Community Support Program that consumers receive the services they want and (CSP), an initiative by the National ,Institute of need to live productive, meaningful lives. Mental Health, was to stimulate states ·and Traditional case managers use a problem oriented localities to develop comprehensive community approach, link'- .clients to services, and monitor services for persons with severe mental illness. The needs and services. stated goal of CSP was to improve patients' quality The research design is a pretest - posttest of life (Schulberg & Bromer, 1981; Tessler & control group design with repeated posttest Goldman, 1982), which was broadly defined as the measures. - case managers, with their existing extent to which "improvements in system caseloads, were randomly assigned to an performance actually translate into humane, experimental or control group. Experimental dignified, and satisfying conditions of community group caseloads were 15-17, while control group living for. chronically disabled clients." (Tessler & caseload averaged 18-20. Clients were interviewed Goldman, 1982, p.186) Case management is an at six month intervals over an 18 month period. integral component of those services planned and During the first year of the project, two implemented through the CSP initiative. groups , each consisting of five case managers and one supervisor, received intensive training in one Improvement in quality of life plays a of the two Case Management models,i.e. Broker central · role in psycho-social rehabilitation and Rehabilitation. This included 13 days of (Anthony, Cohen, & . Vitalo, 1978). The goal classroom training, 10 half-day study sessions for setting process between clients and case managers remedial work, and in-depth practice. Each case focuses on the environmental domain in which the · manager had six individual feed-back sessions, in client desires improvement. Discussion centers on which their taped assignment with one of their factors associated with quality of life, e.g. "How can clients was critiqued by the trainer for strengths I improve my living situation, get or ·keep a job, and needed improvements. Implementation of the

39 model began witq those clients who had rooming/boarding homes, an~ participated in the taped assignment. 2.2% were homeless. At the end ,/ The main hypotheses of this paper is. that of the project, 7.8% lived in clients served by the. Rehabilitation approach group living or rooming/boarding should evidence increased improvement in their homes, and no one was homeless. quality . of life due to the specific focus of the • Client satisfaction with the model upon this domain. Both the Broker and the physical attributes of the home Traditional models should produce _less marked (kitchen, bathroom, privacy, gains in client improvement·due to·their emphasis amount of space, condition. of upon service conn~on rather than upon the building, and heating of the more personal dimension of quality of life. home) was largely· positive, with A variety of quality of life measures are average scores S or more on a 7 included in the interview questionnaire. Most are point scale. There are no taken from Lehman's (1988) Quality of Life significant differences among the ·Interview, and integrated into the interview three case manager groups or questionnaire. They focus upon both the objective over the 18 month period. characteristics of a client's life situation, such. as • Client satisfaction with their· housing environment, and subjective community (location, housing, dimensions, particularly their personal satisfaction neighborhood) . is uniformly with areas in their life. The concept of objective positive. There are no significant information and subjective satisfaction with that differences among case manager area was extended to include sexuality and religion. groups or over time. Specific indicators for this study are drawn from • S1% of the Clients live alone. these domains. From the larger list. of quality of • 22% of the Clients live with life variables, the limited list selected for this paper their own family as follows: 11% include housing, living conditions, employment, of the Qients live with their income, education, and general rating of quality of spouse/live-in partner, and an life. additional S.5% live with their SUDl'1lary of Findings spouse and children. ·Another • The Clients in this study include only S.5% live with their children only. those 91 persons who were interviewed for • 8;8% live with parents or other all four interviews over the 18 month relatives, and 11% live with other period. mental health consumers or • These Clients range in age from 25 to friends. 79, with the average age of 4S.6. There were 6S women (71.4%) whose average of Educational Environment 48.5, and 26 men (28.6%) whose average age was 38.5. • At the end of the project, the • Statistical tests have shown no difference majority (51.6%) have completed between the distribution of people across high school or have the GED, the three case manager groups by age, 15.4% have less than high school, gender; or diagnostic category. and 22% have some college, with . 2% having a professional. degree. Home Environment There are no significant differences among case manager • At the end of the project, 73% groups. of the Clients lived in an • During the project, 6.6% of the apartment, with 60% receiving people completed High School or financial support, and 13% being the GED, and S.5% completed independent. some college . • At the beginning of the project, .• S6% ·of the Qients indicated 13.2% lived in group living or they would like more education.

40 Vocational Environment at a significant level. • There also ·was significant • At the end of the project, 13% change over time for all groups. of .the clients were in paid employment (3% full time, 3% General Conclusion - While there are few supported employment, 7% part ·significant differences among the case manager time). groups, as the data is reviewed, consumer .. • An additional 11% worked in participants in the study emerge as individuals with regular volunteer jobs, and 4.4% accomplishments, aspirations, disruptions, and ere . going to school or in job dissatisfactions and indicate that they do want to training. improve their lives and situations. The major • 50.5% of the Clients consider conclusion is that the people interviewed are a themselves unemployed. diverse, heterogeneous population. What they • Those who were unemployed have in common is a diagnosis as people with expressed dissatisfaction with mental illness. their work situation by rating two questions, how they felt . about being unemployed, and about the Ruth Ralph is a Consumer Researcher, lack of work in their . life. and was Principal Investigator for the Maine Case Average scores are around 3 on a Management Research Project. She is now a 7 point scale. There were no Research Associate at the Edmund S. Muskie significant ~ifferences among case Institute at the University of Southern Maine. . manager groups. Bruce Cary is a Senior Research Associate and Professor of Public Policy and Management at the. Income/Sufficiency Muskie Institute.

• Client's average monthly income RESOURCES is about $550. It increased an average of $50 over the four Anthony, WA., Cohen, M.R., and Vitalo, interviews (18 months) There R. (1978) the measurement of rehabilitation were no significant differences outcome. · Schizophrenia Bulletin, 4, 365-383. among case manager groups. Bigelow, DA., Brodsky, G., Stewaard, L. • Clients were asked if they had and Olson, M. (1982) The concept and enough money to cover basic measurement of quality of life as a dependent needs (food·, · clothing, variable in evaluation of mental health services. in rent/mortgage, utilities, phone, GJ. Stahler and W.R. . Tash, (eds) Innovative medical care, transportation, approaches to mental health evaluation. New York: social activities). In a summed Academic Press; 345-366. scale of these responses, Qients Campbell, J. and Schraiber, R. (1989) The indicated that they do. However, well-being project: Mental health clients speak for some have subsidies. to help, e.g. themselves. the Californi3: Network of Mental food stamps, and Medicaid. Health Clients, Sacramento, California. Lehman, AF. (1988) A quality of life General Quality of Life interview for the chronically mentally ill. Evaluation and Program Planning.· 11, 51-62. • Clients rated their overall Lehman, A.F. (1991) Measures of quality of life within the past humanistic outcomes (guality of life) among- month, six months ago, and their persons with severe and persistent mental expectation for six months in the disorders. University of Maryland. future in each interview. Schulberg, MC. and Bromet, E. (1981) • Qients in the Rehabilitation Strategies for evaluating the outcome of group expressed more optimism community services for the chronically mentally ill.

41 American Journal of Psychiatzy, 138, 930-935. approach to working with mental health problems Tessler, R.C. and Goldman, H.H. (1982) in old age. Contents: individual study,pack - study The chronically mentally ill: Assessing community texts - audio cassette; RI"OUP study pack - complete support programs. Cambridge, Mass.: Bullinger individual and assessment packs - video cassette - Publishing Co. group leader notes. Zautra, A. .and Goodhart, D~ (1979) Quality of life indicators: A review of the Mental Handicap: Patterns for Living literature. Community Mental Health Review 4, 1- PSSS. Introductory level study pack. Study time: 10. 60 hours. The aim of the pack is to respond to and support the changes occurring in the lives of mentally handicapped children and adults as the emphasis on community-based services and "normalization" takes effect. They themselves are having to adapt to new situations and learn new skills. What is often overl09ked, however, is the extent to which those providing the day-to-day (COMPILED BY IRVING KENNETH ZOLA) support (whether parents, volunteers or paid staff) are also having to face new challenges and develop . Leaflets giving more information about all these new ways of working, often with very little back-up courses and study packs detailed here are available or support in their own right. Without such from: The Information Officer, Department of support there is a real risk that the emphasis on Health. and Social Welfare, The Open·University, normalized services will result in living conditions Walton Hall, Milton Keynes MK7 6AA, UK. which offer people with mental handicaps· no Phone: 0908 653743. advantage over previous services. I The learning materials include written Mental Health Problems in Old Age PS77. material, TV/video programs and audio tapes. The Introductory level study pack. Study time: · SO course offers information, guidance and support to hours. The health and social work professionals help people to work out, through their own working within the community constitute the experiences, the implications of the changes for primary target audiences for- this study pack. This them. The pack is designed, in content and style, includes the principal occupational groups engaged primarily for parents and in-service residential and in primary health care: general practitioners, GP day staff, particularly those without existing trainers, district nurses, health visitors, community qualifications. It is expected, however, that other psychiatric nurses, social workers attached to groups will also find it relevant and adaptable to practitioners and health centers, and field and day particular settings and uses. There is an emphasis center staff in local authority social services on improving understanding between different departments - mainly social workers. The pack will groups, particularly parents and staff. Some also be of interest to a wider audience, including material is built in for use in mixed group sessions hospital and residential workers, voluntary workers, and guidance is offered to encourage the setting up caring relatives and older people themselves. .The and co-ordinating of such groups. Student Pack: course aims to: study texts, audio cassettes, four TV programs, • increase knowledge of mental health problems in state benefits guide.· Group Co-Ordinator Pack: old age complete student and assessment pack, two video • promote greater understanding of the needs of cassettes, group co-ordinator's notes. relatjves and other supporters of the older mentally ill people living in the community Mental Handicap: Changing Perspectives · • increase awareness of different kinds of K.668. Available in 3 formats: Quarter credit treatment care and· support course with tuition; Study pack (Available any • encourage a critical awareness of the time); Tuition and Assessment course ( option only consequences of current community care policies for previous purchaser. of study packs who later for older mentally ill people and their carers decide to study fc:>r a quarter credit towards HSW • encourage a multi-disciplinary and co-ordinated Diploma) Study time: 100 hours. The course is !, 42 intended for: Those who have studied "Mental Pack: Video Cassette; Audio Cassettes; Student Handicap: Patterns for Living P555" and wish to Workbook; Group Leader Notes. Multi Pa~k: 10 continue their learning; Professionals from Student Workbooks for use in conjunction with the education, health, social services and the private Group Leader Pack. Assessment Pack. sector who have a role in the mental handicap Assessment Multi Pack (for 10 students)o services and want to undertake some specialist training; Those who already have a qualification and need to bring it up to date; Others with an interest in mental ·handicap, especially parents. The course helps you develop a participative approach in service delivery; recognize experience as a point of departure for learning, understanding and analysis; develop skills of critical analysis and Jeanne M. Dumont, Ph.D. evaluation in relation to awareness both of self and Cornell University 1993 of policy issues; understand and contribute to different processes of change at a personal, Community Living And Psychiatric Hospitalization institutional and policy level. From A Consumer/Survivor Perspective: A Causal The course uses "Know Me as I Am", an Concept Mapping Approach anthology of contributions by people with learning difficulties, as a basis for looking at people's lives. · An innovative methodology was used to Important themes include challenging behavior, derive pictorial representations or maps from the ethnicity and race, class and gender, severe and interview data of psychiatrically deinstitutionalized profound handicap, and age-related transitions. . persons to find out: 1) What factors and Course Con~nt: Individual Study Pack: relationships contribute to community living and Study Texts; Anthology; Audio Cassettes. Students hospitalization from the perspective of persons t~ng the course also rece.ive tuition and are who have been psychiatrically institutionalized two required to complete written Assignments and sit or more times? 2) What is the feasibility and utility an Examination. Group Co-<>rdinator Pack: of the methodology in building theory and · Complete Student Pack; Video; Group Co- measurement from this perspective and in general? ordinator Notes. First individual maps were developed to Patterns for Living: Working Together . represent the thinking of ten persons. In depth P555M. A study pack for people with learning interviews were coded to identify relevant cause- difficulties. This course is the first University effect assertions.· Each individual sorted his or her course for people with learning difficulties. It is a statements several times into piles of similar ones. transformation of Mental Handicap: Patterns for The sort piles were coded as a similarity matrix Living P555 into a format which is readily· that was the input for multidimensional scaling. accessible to people with learning difficulties. The The output from the multidimensional scaling was course includes innovative features such as scripted subjected to cluster analysis. Cognitive mapping audio drama and a Student workbook which provided the key causal assertions among the . depends on illustrations rath~r than the written clustered concepts which were added as arrows to word. the maps. Participants named their clusters and The pack is designed both for individuals interpreted the causal concept maps. Second, an studying with a partner and for group study. It is aggregate map was developed from the individual seen as an ideal resource for use by: self-advocacy · map. Five persons sorted the cluster names from groups; students in Further Education Colleges; the individual maps. The data from the sorts were people preparing to move out of institutions; older used as the input for multidimensional scaling ' pupils in Special Schools; groups in Adult Training followed by cluster analysis. The relationships that Centres and Special Education Centres; and individuals had asserted among the concepts were individuals studying with family, friends or staff. retabulated for these. aggregate clusters and shown Contents: Individual Student Pack (for individual as arrows on the aggregate map. students working with a partner): Audio Cassettes The results show that participants actively Workbook; Study Partner Notes. Group Leader seek to understand their problems. They learn

43 from their experiences, rejecting strategies that fail replacing them with new ones. Unlike stereotypical views of this population; their thinking is complex and variated. The factors that contribute to successful community · living vary in kind, combination or emphasis from person to person Kate Seelman and include: independence, staying away from ABNORMAL POLITICS alcohol, money, learning, less madness, self- help/advocacy groups, a system of beliefs, · The value of abnormality retains support understanding, expansive and relaxed as a basis for· disability planning and policy thinking/feeling, extraordinary doctor, medication development. In Washington, two recent meetings that works, positive interpersonal relationships, focused on disability policy research. At each, a music, sense of self, a live-well instead of get-well few participants recommended that research model, ·confidence, avoiding trouble, opportunities support the development of quantitative measures for work and love, good rehabilitation, and good of ability. jobs. The hospitalization experience may range The National Council on Disability (NCD) from a "rest cure" to a "chemical straitjacket." It and the national Institute on Disability and can create, exacerbate or ameliorate conditions, Rehabilitation Research (NIDRR) co-sponsored a although treatment that is coercive and involuntary conference ~ntitled "Furthering the Goals of the severely diminishes the chances of improvement or . ADA Through Disability Policy Research in the recovery. 1990s." .The National Center for Health Statistic., The aggregate map captured commonality (NCHS) Centers for Disease control and across the individual maps, showing that the Prevention : ( CDC), in collaboration with the autonomy and stability of individuals living in the United Nations Statistical Division, sponsored a community are aided by the realizations and workshop on ·classification and measurement in strategies of the consumer/survivor, helpful population-based surveys, entitled "Toward a measures of the provider system, and the support National System of Statistia for Persons with and helping tools ( e.g. jobs, opportunities, housing, Disabilities." · Both meetings were held in· spiritual guidance and self-help/advocacy groups) of December, 1992. 1 the community base. When persons encountered Both meetings· were designed to address helpfq.l measures within the system, they became U.S. involvement in WHO-sponsored activities to more receptive to further contact, although they revise · the International Qassification of wished to choose and control their care. Abuses Impairments, Disabilities and Handicaps (ICIDH). from treatment created and exacerbated problems The NCD-NIDRR conference did not have clear or illnesses and hindered living in the community. outcomes. (The discussion will be carried forward Both indivtdual and aggregate maps are at an SDS panel at the June meeting.) However, useful in building theory and measurement. The the objective of the NCH/CDC-UN conference was mapping methodology can be used for elucidating, · met. The director of the NCHS announced that discovering and reconceptualizing major constructs NCHS staff would participate in WHO-sponsored and relationships in a content area such as activities to revise the ICIDH. autonomy and stability. Causal concept mapping What does this say about who is making can be a basis to operationalize variables and decisions? A group of researchers from major theorize a pattern of effects that could strengthen federal agencies and other organizations reach · the validity of obtained results. It also can be a re- consensus around health policy research and evaluating one's own cognitive understanding either persons with .disabilities. However, they do not alone or with a friend or counselor. Finally, the recommend or commit resources to support findings suggest the importance of looking at "normalization research," such as the development individual results in research with persons labeled and impleJ11entation of indicators to ·show the seriously mentally ill. Looking only at the aggregate · impact of the ADA? neglects the different paths individuals follow. The medical model simply does not contain the interdisciplinary potential to address the needs of people with disabilities in the

44 community and in the workplace. The medical reveals a system which purports to heal, but may in model . is concerned with people who function fact rub salt in, the wounds of America's children. below the normal. Agencies which conduct major population surveys (NI-llS, SIPP) ·have a medical or Like Ira Schwartz' earlier book, (In)Justice a work disability orientation. .They measure for Juveniles, Lexington, Mass., Toronto: D.C. function in terms of risk factors, e.g., physical Heath and Company, 1989) Armstrong looks activity and health promotion behavior. Census beyond the surface of what has become th~ surveys do identify people with disabilities but multibillion dollar psychiatric industry which deals don't measure abilities. in the business of treating kids. But where Researchers such as Mitch La.Plante Schwartz puts special focus on the legal and indicate that within the social science literature political aspects of the problem, Armstrong zeroes there are scales that measure abilities and function. in on many of the social and economic factors Researchers within the medical disciplines and which act as the yeast for this unsavory concoction. those within the social sciences have the research tools to create a broader interdisciplinary approach What results is a system that doesn't know to planning and policy development. However, the quite what to do with itself: a system which pays commitment of individual biomedical and social "bounty hunters" to bring in the clients--often by science researchers may be reflected in the research preying on the fears and doubts of parents who mission of their agencies. Agencies, by law, may be want the best for their children--and has yet to authorized to collect health and work-disability offer proof that it can do any better. For example, related data. According to LaPlante, collecting a child who has trouble bonding is rescued from workplace and community data about individuals his mother (or is it the mother who really needs to would be a. costly activity for NlllS. But this kind be rescued?) The child starts in a succession of · of data collection effort might be supported by the hospitals, residential treatment programs and bureaus of Labor Statistics and Census. "therapeutic" foster homes. Each time the child Agencies engaged in the collection of "fails" in one of these situations, he is passed like social statistics need to have the ADA charge put a bad potato to the next. And as his prognosis to them. Else the government will continue to spirals downward, his "diagnosis" is embellished at support the value of . abnormality in planning each and every tum. Soon you have an disability policyo untreatable child with dwindling options and a skyrocketing pricetag: A great cure for a child who· has trouble bonding. Armstrong points out another of the many striking ironies which infest this system: A mother in one state learns that the involuntary restraint of 1111111~ her son in his room is illegal. But it is not illegal to hire a service to restrain the kid and transport Armstrong, Louis, And They Call it Help him to a place which can legally place children in . (The Psychiatric Policing of America's Children). restraints, .or in a locked seclusion cell. And all (To be published April, 1993, Addison"'.Wesley, this is being paid for through private insurance and New York, Hardcover $22.95.) government funding. In this soon-to-be-published work, Louise One of the most chilling revelations in this Armstrong takes the reader on_ a somewhat book-involves an examination of the way DSM-III- "tragical" mystery tour of the American mental R diagnoses are formulated. The author health system's treatment of children. Armstrong, compellingly demonstrates that the process is far · who is also a well known author of children's more political than scientific. Yet, the approach books, has previously written exposes on incest carries with it a "look" of empiricism which gives-it (Kiss Daddy Goodnight, New York, Hawthorne, the weight and appearance of validity, which may 1978; New York Pocketbooks, 1987) and the hide its true nature. In this system of diagnostics, ·nation's foster care system (Solomon Says, A a phenomenon like truancy can be twisted into a Speakout on Foster Care, New York, Pocketbooks web of "symptoms" that lead to a biochemical 1988.). In And They Call it Help, the author theory of the disorder. The result is a license to

45 treat children with chemicals, for which there is Hall Inc., 1991, 182 pp. scanty proof of effectiveness, but plenty of well- The process of emptying long stay established dangers and risks. The biochemical institutions for the mentally handicapped is now theories of "behavior disorders" also work to well underway in Britain where it h~ been absolve parents of the fears and the stigma that accorded priority in government policy and -local somehow they ·are "bad parents". practice. Many different professionals are In this book, the author penetrates the completely caught up in the immediate problems of perspective of the parents who often feel trapped implementation and in endless fights over scant themselves, as well as those who run the system-- resources. It is therefore valuable to have a book who are surprisingly willing to expose themselves. which stands back from minutiae and considers the But most importantly, the book draws richly from theories and assumptions underlying the move the first-hand experience of children--a remarkable from asylums into the community. achievement considering the difficulties in The contributors to this multiauthor obtaining access to many of these kids. volume are all reputable academics and The perspective of the child trapped in a practitioners and their ideas are well integrated system of treatment with no cure, reveals perhaps into a satisfactory whole. The limits of deviancy the most troubling implications of "helping" theory and the problems underlying the concept of America's ·children through psychiatric policing. normalization are well addressed by Hattersley. This viewpoint .is· eloquently summed up by, Delia, Alaszewski and Bie Nio Ong review the impact of one of the young voices out of Armstrong's book: sociological ideas on policy and are to be congratulated on introducing a feminist analysis to But the worst part of it, the the area of caring for people with handicap· which, scariest part, I think, is that they almost exclusively, devolves upon women. The can really get you to doubt matter of the human rights of the handicapped is yourself.... fYou grow up thinking raised in several chapters, although this matter has this kind of thing can't happen. not yet been adequately dealt with in Britain, And just the fact that it does, and compared to the States. Some writers stress the so many people are ;saying, "Oh, importance of team work, but a close reading of you really need to be here," and, the text reveals how seldom there is really good "You can't be trusted,• can make cooperation between all sorts of different you doubt yourself -- hearing that professionals, helpers and agency workers for the· all the time .... 1And the fact that benefit of clients and families. Special problems they can dull you like that -- just regularly arise at the points where someone must dull you and make you give up move from home to community or out of a hope, and tell you, "~ete's no familiar form of education. The economics of such thing as fair," -- things that alternative care options are tentatively analyzed by you've relied on: "It doesn't Wright and Haycox, who admit how extremely matter, because this is where you difficult it is just to enumerate inputs, quite apart are" -- and they make you feel · from outputs - since there are simply no agreed like you can't do anything to. measures of the latter. The notions of community make a difference; That's th~ . and neighborhoods are critically mined by.Baldwin worst part to me. in terms· of what they can actually mean for individuals. (Jean Matulis, B.A., Elmhurst College, . The· fact that this book is based on UK J.D. University of San Francisco. Ms. Matulis is a experience should not deter American readers patients' rights attorney and child advocate in since the text is very clear and the whole complex California. As a child, she spent several years in topic is usefully subdivided and jargon free. It the mental health and juvenile justice systems). could be a useful text for student courses in the human sciences and it is provided with extensive Baldwin, Steve and John Hattersley (eds). and well chosen references. (Una MacLean, Mental Handicap, Social Science Perspectives. Edinburgh). London and New York; Routledge, Chapman and

46 Breggin, Peter R., M.D., M.D. Toxic (FDA) - mainly because of their monopolistic Psychiatry: Why Therapy. Empathy. and Love power and commitment to profits and public image Must Replace the Drugs. Electroshock. and above people's health and safety. Biochemical Theories of the "New Psychiatry." Antipsychiatry critic and author Jeffrey New York: St. Martin's Press, 1991, 464 pp., Masson once called Breggin a "one-man intellectual $24.95 hardcover. · SWAT team." I agree but Breggin is more than Peter -Breggin is a very special and that. He is one of those very rare physicians, courageous person. As an ethical ·and dissident public health educators and human · rights psychiatrist practicing in the United States, he advocates who is passionate about truth, justice dares to expose and demolish a lot of vicious and freedom for psychiatric survivors and the rest myths and lies told by his colleagues about "mental of us who may be subjected to psychiatric illness," "schizophrenia," and the so-called "effective treatment and tyranny. He cares deeply about and lifesaving treatments" such as the "anti- people in pain and crisis and is not afraid to say psychotic" drugs and electroshock ("ECT'). Dr. .and show it. Maybe that's one reason why Toxic Breggin has already risked professional censure and Psychiatry has not yet been reviewed in any ostracism by having publicly criticized the establishment newspaper or magazine in Canada, neuroleptics, antidepressants and electroshock and and in only one newspaper in the United States · their "side effects" as brainmdamaging, .sometimes (e.g., The San Francisco Examiner-Chronicle), life-threatening. despite the fact the book has already sold Toxic Psychiatry, Breggin's sixth. book, is approximately 20,000 hardcover copies since its an apt title. Dr. Breggin relentlessly documents publication last November. Perhaps Dr. Breggin is just how poisonous and destructive the drugs, too brutally honest and courageous for the wimp- electroshock and psychosurgery and other forced ridden psychiatric establishment and its "mental procedures really are, just as he did in two of his health" apologists/promoters in the media and previous books, Electroshock: Its Brain-Disabling academia. Both Peter Breggin, as physician and Effects (1979), and Psychiatric Drugs: Hazards to activist, and Toxic Psychiatry directly challenge the the Brain (1983). This book is an expanded and power of the biological psychiatrists. This is why _revised version of these other works: it's also a psychiatric survivors and other critics of psychiatry powerful frontal assault on biological psychiatry and human rights advocates will love and be and psychiatric fascism. Toxic Psychiatry is a inspired by. this book. · Biographical Note: Don · brilliant and humanistic plea for common sense Weitz is a psychiatric survivor, a.Iitipsychiatry (trusting our own instincts and feelings), human activist, human rights advocate, and co-editor (with rights advocacy and self-empowerment. Dr. Bonnie Burstow) of Shrink Resistant: The Dr. Breggin's immense knowledge and Struggle Against Psychiatry in Canada (New Star insights into psychiatric drugs (he aptly labels them Books, 1988.) "neurotoxins") and electroshock (Ber) is truly awesome, and he generously shares much of this Dworkin, Rosalind J. Researching Persons valuable knowledge with the reader in down-to- with Mental Illness. Newbury Park, CA: Sage earth language - a welcome relief from the . Publications, Applied Social Research Methods mystifying rhetoric or psychobabble found in Series, Volume 30, 1992, 141 pp., $28.50 hardcover, psychiatric journals and textbooks. He eschews the $13.95 softcover. psychobabble of psychiatric diagnostic labels and This book is intended to introduce social talks instead about life crises, self-help alternatives scientists, particularly sociologists, to the special and existential "overwhelm" - not "psychosis" or problems and challenges ·of conducting research "schizophrenia." He exposes psychiatric "on" persons with mental illness. While there are medication" and shock as the social control some helpful hints and methodological insights weapons they are and blasts the "psycho- scattered throughout, more often the book is pharmaceutical complex" - his term for the contradictory, lacking depth in it's treatment of the notorious coalition of the multinational drug many theoretical, ethical, and methodological issues companies, the American Psychiatric Association related to the topic, and somewhat dated in (APA), National Institute of Mental Health content and tone. (NIMH), and the Food and Drug Administration One of the first ( and persisting)

47 r contradictions concerns the use of language. The the field of inquiry wherein most sociologists author asks, "Who are the mentally ill?" She then conduct research regarding persons· with mental proceeds to note, correctly, that posing the illness, is mentioned once in passing. This is question in this way presumes a homogeneity ·especially curious because much relevant among those so labeled that does not exist. Yet, methodological innovation has occurred in the • J throughout ·the remainder. of the book, "the11 services research enterprise. The recent National mentally ill are the subject of discussion. Chapter Plan for Research on Services for Persons with 5 is entitled, "The Mentally Ill as Respondents." Severe, Persistent Mental Illness promulgated by This sort of unheeded warning recurs repeatedly. the National Institute of Mental Health is nowhere In the realm of language, I also found the title of in evidence here,· but is the only official document the book troubling. While there is· some attempt that explicitly endorses social science research with to use person-centered if not person-first language, the target group during this decade of the brain. the idea of "researching" persons is an This book is intended as a methodological uncomfortably active, or acting on, phrase. The primer. Yet in the chapter on research design, the author does not discuss conducting research 11with11 author launches into a discussion of sampling persons with mental illn:ess, but research "on" them. franies and issues without stres$ing that the She seems unaware of the existence of consumer research questions should be posed first and conducted research, along with equally significant should determine the size, shape, and nature of the developments in illness narrative and first-person sample. Informed COD.$ent as a process is the chief account scholarship.· · topic of the section on research ethics and the The particular interests and strengths of treatment is helpful. The very pressing issues of the author emerge as unexpectedly detailed respondent privacy, self-recognition, and how to sections of the· boo~. Dworkin knows a great deal present detailed case studies that are acceptable to about the hazards of using archival materials, research participants are, however, left primarily medical chart data, if they were more unmentioned. accurate than interview data. These are warnings Finally, there is a very curious convention well heeded by those in search of "objective" data of the "interlude" that punctuates the book. These regarding persons with psychiatric disorders. At seem to be short discussions of particular the same time, there are curious omissions of, for experiences or projects that have been informative example, discussion of the difference between a for the author. They are like asides from the comparison and a control group, or the author to ·the reader. The interludes might have extraordinary difficulties of administering the many been ore instructwe had they been more fully symptom scales she reviews to the target group. In developed as richly descriptive case studies. the section on proxy interviews, the author ignores At times the book is written· in such a way the large body ofresearch and writing generated by as . to convey a sympathetic portrayal of the relatives of persons with psychiatric disorders. "subjects"--persons diagnosed with psychiatric More importantly, there is only scant discussion of disorders. Yet at others, ·they are represented as the ethical and logistical problems posed by the objects of inquiry or the source of difficulties involving family members in this type of research, to the researcher in a manner devoid of human especially when experiences and perspectives may texture and flavor. I fmd this latter point diverge greatly, with much passion, and with particularly curious because it is the diversity of potential harmful consequences in the hands of an humanness and the compelling human problems unexperienced researcher. experienced by persons with these labels that If ind Few of the ,eferences cited by the author to be one of the most alluring reasons to engage in are recent, with many of them from work nearly a this kind of work. decade old that has been superseded. For It may be that the format and constraints example, the review of Scheff's important work · of the Sage series of which this book is apart took relies on the first rather than on the importantly their toll on this well-intended volume. It would revised second edition. Similarly important recent seem suitable only for the most uninformed work on violence and mental illness by Bruce Link audience, perhaps undergraduates in their first and. colleagues and Jeffrey Swanson and colleagues methods course. But one hesitates to endorse this is not mentioned. Mental health services research, kind of flawed introduction to such an important

48 area of inquiry and such a potentially rich research acceptance of her own nature. Both saw her as an experience for social scientists of all stripes. (Sue artist recovering from illness, not as a person E. Estroff, Social Medicine, School of Medicine, needing social readjusting. University of North Carolina-Chapel Hill.) No one asks whether Homer's description of Odysseus' accidental near drowning was written Frame, Janet. Faces in the Water. New from personal experience but mental illness is a York: George Braziller, 1992 (1961], 254 pp., $8.95 different kind of accident. Of course, it is of softcover. interest that Ms. Frame absorbed and could later . Janet Frame, the New Zealand writer, is present the essence of her hospitalized experience. first and foremost a skilled storyteller. Iri her Unfortunately, even thirty years later, more work, she makes use of the far reaches of her life, ordinary people are often treated as though we bringing the world of madness and 'treatment were in storage during those years. so close we can feel their ordinary and Frame's narrator, Istvina, takes the reader extraordinary texture at the same time. When we through years in a Kaflcaesque system marred daily journey with Frame, the way opens for deepening by the self-absorption and self-deception of most our understanding of the connections between people who surround her. Istvina's unsought mind, emotion, madness and creativity. journey through fluctuating madness becomes a With a first novel already accepted, Janet young adult's initiation into the levers and switches Frame was already confirmed in her identity as a of society. Through her eyes, I began to see the writer before her mental hospitalization. Later, institution as a pinball machine lighting up with a accepting the validity of her asylum experiences, series of seemingly endless haphazard she began to draw from her full past in her writing. consequences whenever Istvina bumps against its walls. Early in Faces in the Water, Frame's Because Frame tells the story in the first narrator, Istvina, says: person, some readers have assumed that her narrator,Istvina, is Janet. In fact, Istvina and her I will write about the season of peril. I journey are Frame's creations infused with the kind was put in hospital because a great gap of .understanding many "mental patients" share. opened in the ice floe between myself and Frame, like Jane Austen, has a gift for the .other people whom I watched, with showing garden-variety human insensibility: their world drifting away through a violet- colored sea where hammerhead sharks in Nurse 1 tells Istvina that a girl with her tropical ease swam side by side with the good education should behave and seals and polar bears. (p. 10) pull herself together. (p.190) Nurse 2 tells her, "You've been in places The poetic style is only one facet of like [this] before. Frame's writing. The attentive reader will. learn a Don't pretend you're not used to great deal by reading the abundance of realistic them." (p.136) detail she provides in this novel. She shines a clear The Chaplain speaks "as if I suffered from light on the hospitalization experience, illness, and a disease that would infect the recovery in civilized society. books." (p. 241) I came to Faces in the Water by way of the last volume of Frame's memoirs, The Envoy to and so on through many variations. If none of Mirror City (1985). In this volume; Frame these sample encounters sounds devastating, they describes her return to her craft and confidence are only a sample of the hammering Istvina takes. following her mental hospitalizations. She found I believe that many of the attitudes Frame coachs in a New Zealand writer and .an English records continue to surface in this Postmodern Era doctor who supported her in making a clear way of ,institutions without walls. In my city, the for herself as a writer. The New Zealander Division of Vocational Rehabilitation has taken strengthened her in her return to her work; The three decades beyond the end of racial segregation physician reassured her that her rather solitary to ·do away with its assignment of separate lifestyle was valid for her and reinforced her restrooms for clients and staff.

49 But Frame also takes us along with Istvina contributors. The Task Force was organized in through the less dramatic Journey of the return recognition of the fact that depression, one of the from madness. She shows this return· as being most serious mental health problems in this difficult in itself,· not only . because of the ·country, afflicts women at a rate twice that of men. institutional climate. Like Hannah Green's Esther The goal of the Task Force was to identify risk in I Never Promised You a Rose Garden (Why factors· for and treatment needs of depressed hasn't anyone ·made a. film of Green/Joanna women. They sought to accomplish this goal -by Greenberg's life?) or Sylvia Plath's heroine in The summarizing some of the existing resear~h and Bell Jar, Istvina goes through ordinary experiences theory on women and depression. Although the such as being on leave with her family or going to preface states that . the Task Force was a hospital dance. The reader who works with interdisciplinary one, most of the Task Force people having a history of mental illness may want members were psychologists, psychiatrists and to read the later chapters in Frame's novel more practicing psychotherapists. These orientations · than once to absorb details of the lonely, less were reflected in the literature reviews which . colorful path of re-entry. tended to be primarily psychology and psychiatry Faces in the Water worked its magic on and some sociology and social work literature. As me, bringing into consciousness my own inner a result, despite the multidisciplinary membership strength in illness, a str~ngth I, like many, tend to of the 'Task Force, there is a decidedly medico- underrate because I was weak in relation to psychiatric-individualistic-contextual .. orien- powerful forces I could not control. By the· time orientation to the book. · Istvina at last approached the promised land ofthe The book is divided into three sections: 1) library van only to be turned away by the · Risk Factors and Research Issues; 2)- Treatment insensitive chaplain, I wept from the center of my for Women with Depression and 3) Special Female being at her unnecessary helplessness. Populations: Risk Factors and Treatment Issues in Then, Frame's story takes a tum and here Depression. Each section concludes with specific I believe Istvina does speak in Janet's voice: recommendations for the section topics. The first section on risk factors and treatment issues is by 11And from that day, I felt in myself a far the strongest section of the book. Although · reserve ofwarmth from which I could help· there is some attempt to bring a global perspective · myself." (p.-243) to the review of the literature on gender differences in depression rates, the primary focus Faces in the Water has a special message. · is the United States. Because a great deal of for the survivor of·mental illness, fr,iends, relatives, depression research is based upon medical and people working within the disability field. So definitions of depression, i. e., Diagnostic and does the recent softcover · edition of Frame's Statistical Manual of Mental Disorders (Third memoirs, now called An Autobiography. in which Edition Revised) (DSM-III-R), the sub-section on Frame's hospitalization is but one episode in the definition and measurement of depression is also . _.life of a born storyteller. (Rochelle Cashdan, an medically oriented. To their- credit the Task Force _ anthropologist and writer, drew on her experiences does note the lack of consensus about depression of mental hospitalization in this country and related diagnostic categories. England in writing this review. 5248 NE Wistaria, After recommending that the research on Portland, OR 97213.) women be interpreted within a biopsychosocial context,- the .Task Force identified and reviewed McGrath, Ellen, Gwendolyn Puryear Keita, several research areas that have a high probability Bonnie Strickland and Nancy Felipe Russo (Eds.). ofexplaining and predicting women's increased risk Women and . Depression: · Risk Factors and for depression. These areas are reproductive- Treatment Issues. Washington, D.C., American related events, personality and other psychological Psychological Association, 1990, 123 pp. characteristics, social roles and life circumstances. This book is the ·Final Report of the Two especially useful topics reviewed under American Psychological Association's National personality and. other psychological characteristics Task Force on Women and Depression. As a are contnbutors to protection from. depression and result the book reflects the work of a number of mediators/moderators of depression. Under the

50 former, women's willingness to report sadness is group, there are a paucity of references to women viewed as a strength. The latter suggests that of color. For example, none of the research by response style, defined as either active (male) or Brown and Gary on the topic of African American ruminative (female) response set make act as a women and depression is referenced. Although buffer or accelerant to depression. The sub-section. there is a strong emphasis on lesbians, there are no on women's roles · and status examines the references to lesbians of color. Despite the literature on roles as contributors to depression. growing literature on culture and depression, little These roles included family roles, intimate of this literature is referenced. Rather than to relationships, employment roles and the interaction state "Oearly, gender-related societal and cultural among work and family roles. This otherwise conditions compound risk factors for women in the comprehensive review is . limited by -the decided special populations discussed in this report" (p 94), Euro-American orientation to women's roles. The it would have been more helpful know how the· recommendations at the end of section one are the risk factors are compounded.· most extensive in the book. The Task Force is to be commended for The second section on treatment gives a assuming such a difficult task. And as they point good, general overview of the various depression out, this is just a beginning. The limitations of,- a treatment modalities. There are more in-depth report of this size (123 pp) is that many discussions of the psychodynamically based substantive issues can not be dealt with adequately. treatment approaches of interpersonal therapy, This volume, particularly the first two sections, will cognitive behavioral therapy, behavior therapy and be useful to persons interested in learning the psychodynamic therapy. There is a good discussion general background on· some of the issues in of pharmacotherapy. Although feminist· therapy is women and depression. When it was first discussed, it is viewed a perspective that can be· publicized, the news media headlines read most efficacious when interwoven with any of the "Women's -position . in society makes them other specific treatment for depression. depressed." · Now we need a tome that speaks·to It was the last section on "Special Female . how all women are affected by depression and how Populations" that I found most problematic. This we can influence change through empowerment. was also the shortest section. There is a (Evelyn L. Barbee, Nursing and Women's Studies, parenthetical quality to the way that "special female University of Wisconsin-Madison). populations" are dealt. It is almost as if someone on the Task Force said "Oh, we need to write McLa.ughlin,Ann L., The Balancing Pole, something about... " Thus special. female Santa Barbara CA: John Daniel and Co., 1991 populations are identified as being either African Mental illness is an age-old scourge, and American/Blacks, Hispanics/Latinas, Asian yet in this ·era of people's going public about Americans, Native Americans, female adolescents, everything formerly kept in the closet, it still older w9men, professional women, lesbians, women remains perhaps the only secret aside from one's who are physically abused, women in poverty, income that is not generally revealed, AIDS, women with eating disorders, or women who abuse sexual abuse, adultery, rape, even murder, you alcohol and other drugs. The existence of an ·name it, and its perpetrators or victims appear on interaction among the special female populations TV· talk shows. Yet those suffering from two is not mentioned. In fact after accounting for all comm9n illnesses, schizophrenia and bi-polar these women, one wonders who is left. disorders, and their families. are only slowly As one whose interest is depression in becoming more visible. · Latinas, African American, Native American and · Why? Perhaps because it is the most Asian American women, I · .was specifically frightening specter of all and therefore the most disappointed in this section. It was particularly heavily stigmatized. "To go out of your mind".. To weak considering that the introduction mentioned lose your sense of reality. To be turned loose in a that the Task Force's self professed claim of . world with none of the prevailing guidelines that "especially focusing on women who have not been we use to manage our lives each day and !!QUQ well served in the past." The medico-psychiatric- know it! How frightening in others and even more individualistic-contextual orientation is strongest so, the fears that is sets loose in us. . So a novel here. Even though there are sub-sections on each that tackles this affliction is already a risk. I I

51 \... The plot set in the late Fifties - early illness to. the forefront alongside heart· disease, Sixties revolved around Margo, a young woman cancer and AIDS on the nation's agenda for who seemi to have it all - a talented painter research and action. Sparked by the belated happily married to a rising academic and blessed scientific focus on the brain as the last frontier in. with two lovely children. But shortly after movi~g medicine, and by NAMI, the rapidly growing to Berkeley, she.'s overcome by an overwhelming organization of activi~t relatives on behalf of their depression that subsequently alternates with manic sick ones, the outmoded cultural views that .excitement. Her struggle through the denial of her stigmatize patients and blame parents are yiel~g illness .followed by a search for help (initially slowly, yes, regrettably too slowly, to viewing these unsuccessfully with a strict Freudian analyst), a disorders as "no-fault" illnesses. suicide attempt, and subsequent hospitalizations In the Nineties, Margo might very well be and discharges leading to a more eclectic and seeing a psycho-pharmacologist on a regular basis tentatively workable regimen are realistically for custom tailoring of her daily medication, related by a series of voices - Margo's principally, meeting with a support group in the community, but also those of her husband, sister, children, even traveliiig to Washington with other NAMI psychiatrist and others involved with her. Tension members to lobby Congressmen for increased builds quickly holding one's interest and resolves funding for the NIMH. And she might be ending on a note of hope but no easy answers. speaking out openly as a consumer of mental And that was the state of the art thirty years ago. health services fighting for her rights. That's the McLaughlin's apparent intent to depict the real story. · (Tema Nason, Research ·Associate, over-all. impact of mental illness on the family as ' Sociology Dept., Brandeis University). . well as the patient is to be applauded. Too often, attention is focused solely on the patient,· turning Oakes, John G.H. (ed.) In the Realms of family members into a supporting cast whose own the Unreal: "Insarie" Writings. New Yoi-k, NY: pain and di(ficulties go unacknowledged~ Four Walls Eight Windows, 1991, 253 pp., $12.95 However, this technique of shifting softcover. viewpoints which works effectively in earlier / This book is a collection of "insane" chapters becomes distracting. Too often the voices writings by 74 authors from the United States, sound alike serving plot rather than portraying Switzerland, France, .Belgium, Austria and characters who move us and whose plight· disturbs Germany. The writers, both living and deceased, us. Margo's manic-depression · is eventually have all been considered "mentally ill" at some attributed to an early childhood trauma which point in their lives· and many have spent their contradicts current neuro-biological fmdings. entire lives in institutions. Except in a few shattering scenes, the real tragedy In the "Foreword," Kurt Vonnegut, Jr. of mental illness which now affects one out of writes, "Having nothing left to lose frees people to every five families in America, is never fully .think their own thoughts;· since there is no longer captured. · anything to be gained by echoing the thoughts of As a historical record of· how far we've tliose around them. Hopelessness is the mother of come in· the ·· inteivening years in research and Originality." The truth of these words is evident as treatment since the development of psychotropic · one reads In the Realms of the Unreal. From . drugs and lithium, the book has some value. The strict philosophical discourse to the most humanly growing movement to view them as neuro- touching letter to a friend,· each work is startlingly biological illnesses, the inclusiqn of the National unique and original. If there is a common thread Institute of Mental Health in the NIH with its own running through the book, it is the rare level of director, staff and budget, the advances in psycho- truth from which it speaks. Truth comes from the pharmacology,. th~ · Federal · law outlawing refusal to compromise one's experience. employers' discrimination against people with The writings are s~gular in their artistry mental illness suggest significant progress in and in their ability to show the unusual outlook and approach. perspectives of individuals who have been culled The reviewer wishes, however, that from society. The editor was careful not to assume McLaughlin has set her story in the present to the existe.nce of illness; in fact, in the preface he capture the momentum that is forcing mental tells us that he intends for the book to bring the

52 concept of insanity into question. Part of the value Hopelessness, as this. volume demonstrates, are of such a collection is that it allows readers to Hope, and the Gratitude of Others, and reaffirm, or perhaps, affirm for the first time what Unshakable Self-Respect." (Jinie Lind of Fall has been: rejected in us as a people and as. a world. River, MA, is a summa cum laude . graduate, In "Let the Deer in the City" for example, David classical pianist/teacher, poet, spiritualist and Wikar tells us that there comes a time when we psychiatric survivor who also enjoys painting. She must listen to "the earth's gentle," to what has been is active in the Animal Rights ·Movement,· the called "weak and corny" in us; and in "In Reality Women's Movement and the Psychiatric Survivor Check," James Walter Robear Jr. challenges the Movement. She is currently working on an familiar assumption that the voices heard by the anthology of writings by women · psychiatric "insane" are not real. survivors). I found myself frustrated by some of the nearly inaccessible entries in this collection; Podvoll, M.D., Edward M., The Seduction however, the profound unity of even the most of Madness: Revolutionary Insights into the challenging work prompted me to question not the World of Psychosis and a Compassionate ~ter, but my own self-imposed cultural Approach to Recovery at Home. New York, NY: limitations. This writing takes us to unfathomable Harper Collins Publishers, 1990, 342 pp., $22.95 depths and sometimes demands not only that we hardcover, $12.00 softcover. restructure our thinking, but also that we Today there are an estimated 10 million experience that restructuring. This includes the people diagnosed as mentally ill in North America defining of new words and metaphysical alone. Conventional wisdom holds that someone systems--"Willology is the idea of soul in nature"; who becomes insane will always remain so -- that the shivering expression of raw emotion--"All I can there is no cure. Psychiatric treatment today is say/I hate you one and alVand I'll, kill someday"; confined to powerful drugs that, at best, manage wordplay--"Ide Unno Iff itz the Rite flour Ive Pict symptoms, with renewed interest in in migh Try Umph"; and novel solutions--"To electroconvulsive therapy and psychosurgery. This counteract airplane sickness, I somersault to the is coupled with an "asylum mentality" that insists east on a blue sofa.11 on treating many people together in one place. To read this book is to find yourself in the In The Seduction of Madness, noted territory of the avant garde. There the roots of psychiatrist Dr. Edward Podvoll maintains that · genius lay exposed and the only way experience can recovery is possible, even for a severely disturbed be, matched is through new frameworks. Be person. A person in the midst of an extreme assured that none of the material in this book is mental state can be taught to reco~ his or her easy, but whether the difficulty is due to an basic goodness, or sanity, and the ideal place to unusual framework or to the sheer intensity of nurture this inherent quality, he says, is within a what is communicated, one thing is certain, no one homelike environment among caring people. is likely to walk away from it unaffected. Healing is possible using the patient's own hidden As a person who has been diagnosed with resources, with little or no dependence on drugs or "mental illness" and suffered . its stigma and other invasive therapies. treatment, I found myself especially moved by the cries against institutionalization, against the.effects PARABLES OF MADNESS of psychiatric drugs, against the failure of others to understand. In relating to these experiences, In the first part .of the book, four case psychiatric consumers/survivors are likely to find · histories take us inside the psychotic experience themselves empowered as connections to their and· illuminate its tremendous energy and own unvoiced experiences are made. creativity: For readers who are simply curious about --John Perceval, by his own "madness," this book is a candy store,· but I hope courageous effort, recovered from both that it will be read for more than that. It contains insanity and institutionalization and much more. It is a testimony to the value of art became England's most successful "asylum and the survival of people. In closing, Kurt reformer" in the nineteenth century. He . Vonnegut Jr. observes..."the granddaughters of was a forerunner of the present-day

53 psychiatric survivor movement. activities. --John Custance was convinced --Basic attendance: Team that, if harnessed, the power of madness members, family and friends as well as could benefit the world. He deliberately professionals, dedicate themselves. to let his mania run wild and kept a detailed fostering awareness skills in both record of his experiences. themselves and the· client. Gently and --Donald Crowhurst attempted to gradually, the person learns to relax and to sail solo around the world while in an synchronize mind and body in daily life. extreme mental state. He died at sea, and The intimate relationships developed in a although his body was never found, his low-cost treatment program such as Wind.horse can journals were recovered. These illustrate be supplanted with the even closer bonds of family. the cycle of megalomaniac transformation. The Seduction of Madness presents specific ideas --Henri Michaux cultivated on how family members can support a patient's derangement with hallucinogenic drugs. recovery within the home. "The humane principles His disciplined study of the subjective I'm describing are those everybody knows in their experience, and his instructions for hearts,11 says Dr. Podvoll. "The bottom line is: holding the mind steady, are ,invaluable what would you want if you, or your child, were tools for coping with altered states. · crazy: Would you want any other kind of THE MEANS FOR RECOVERY treatment?" This elegantly written book presents a In Part Two,· Dr. Podvoll describes the viable, and above all compassionate, alternative to Wind.horse approach. This approach, he says, the .practices of heavy drugging, coercion, and brings patients to the point.of recovery by shifting institutionalization. The Windhorse approach is their allegiance from insanity to. sanity. one which recognized mind, body, and spirit. It also offers fascinating insights on the nature of the A "therapeutic household" is set up, mind itself. · consisting of the person in difficulty and one or two other people, either professionals of lay BIO: Jeffrey M. Fortuna, M.A., is the senior persons. A team of S or 6 persons is gathered, student of Edward Podvoll, M.D., and is currently each of whom spends several hours with the the Executive Director of Windhorse Associates, 'person throughout the week. Skilled in "basic Inc. He co-founded Maitri Psychological Services, attendance," team members encourage the person Boulder, CO, in 1981, and established Windhorse to maintain attention and sharpen ·perception Community Services, Halifax, Nova Scotia, in 1989. through freely chosen work, relaxation, friendship, For more information contact Mr. Fortuna at P.O. and art. This allows the patient to recognize and Bpx 227, Southfield, MA 01259. · cultivate "islands of clarity" in his or her own mind, Sally Clay is on the Advisory Council for for this is the foundation for lasting recovery. Windhorse Associates. She has been a practitioner Podvoll describes how such a close-knit of Tibetan Buddhism for many years, and a peer team is trained, and how the intimate relationships advocate and counselor for almost as long. She is formed between the patient and the team members a founder of PEOPLe, Inc., a non-profit provide a catalyst for recovery. All of this can be organization run by and for psychiatrically labeled accomplished while simultaneously withdrawing people. Write: 3174 Church Rd., Saugerties, NY patients from the heavy medication they may have 12477. been receiving in psychiatric hospitals~ The Wind.horse team uses two primary Ripa, Yannick. Women and Madness: techniques: The Incarceration of Women in Nineteenth --The therapeutic household: Century France. Minneapolis, MN: The University Within an ordinary home, a healing of Minnesota Press, 1990, 175 pp. (Translated by environment is created. The Windhorse Catherine du Peloux Menage from the french text treatment team, working through this La ronde des folles, 1986) $39.95 hardcover. household, enables the recovering person Y annick Ripa tells a story of the historical to stabilize his or her mind through daily intersection of modem bourgeois society,

54 "objective" psychiatric science and gender in the of Dorothy E .. Smith on "The Statistics on Women birth of the . asylum and the formation of and Mental Illness" in her The · Conceptual psychiatric discipline in nineteenth-century France. Practices of Power (1990); Smith shows in a It is a story told in the space between authority contemporary setting that even the process of and silence: about what is known of the story of gathering statistics rests on an institutional women and madness (via statistics and narrative knowledge and practice that is deeply and accounts in hosgital records), and about .the thoroughly gendered.) At another critical moment silencing of these women's voices. Our attention in her argument regarding the labeling of any is focused .not on a generic interpretation of the . strong emotion in women as a sign of madness, she medicalization/professionalization of mental illness uses the famous case of Elisabeth Packard for and psychiatric care, rather we see the intricate evidence. Yet Ms. Packard lived in the Manteno, play of women's lives inside the family and outside Illinois,. not France. This.poses problems for the in the streets, the fears of the new bourgeois historian qua historian in methodology and . classes, and the role of alienist medicine in approach, yet in and of itself I do not fmd it providing protection for this "new" society. terribly problematic. Although I think she Ripa asks whether the "golden age" of alienist sabotages a critical edge of her work by her medicine in France and .the "great confinement" justification for the inclusion of this case study: "In was conducive to mental imbalance or whether a mind and body, female inmates are women first reflection of growing madness in modem society. and foremost, and only then American or Further she focuses specifically on women: "Were Frenchwomen through their education and women really weaker, more prone to madness, as culture." (Pg.· 43) This may indeed be a true to a the received wisdom of the time would have it, an great extent, but if her point is to show how the idea which is still alive today?" [Pg. 5] In asking coercive beginnings of psychiatry were rooted in these questions one might get the impression that gendered concepts of madness and social order she is re-hashing the issue of madness as "socially then she does her analytical cause disservice. In constructed", but if that is as far as we take her wrestling with her role as a historian, she seems to account we would miss the importance of her unnecessarily constrict her role as a feminist social analysis: how gender-- cultural conceptions of the analyst. Of course what she has to say is equally "moral" dimension of femininity and its relationship important to Illinois in 1864 as it is to 1864 to notion of female biologyao was not merely grist France, and. further, in Boston, U.S.A. in 1993! for the mill of organized psychiatry, but was an Yet her account of why she includes this case-study organizing principal un~ergirding the creation of simply conflates the substantive· issues of the psychiatric discipline. In a careful reading of gender/psychiatry/society in hopes of a Ripa one cannot come away which the idea that methodologically appropriate narration. Had she cultural "biases" concerning women in nineteenth thematized the relationship between gender, society century French society are merely reflected in the and psychiatry more explicitly, the Packard case emergence of a new social organization of would have been another useful piece of data; as it psychiatry, but · rather that the formation stands now, she struggles and stretches to integrate (institutionally and ideologically) significantly relied this information into her historical narrative. on and re-invented gender for its own cultural Ripa concludes her book ( and opens her authority. historical narrative) by positing that "alienist To be honest, Ripa doesn't exactly do this--- medicine" at its birth was socially coercive, and not with theoretical sophistication or sensitivity. In humbly suggests: "There can be little doubt that fact, she, at· times, seems to thwart this powerful these beginnings had a major effect on the direction of her narration. One example of this subsequent development of psychiatry and comes early in the book (pg 13), when she says psychoanalysis." (Pg. 161) Indeed. One need · that her concern is the "borderline cases", because only glai:ice through Part II ·to see that the same they highlight the boundaries between normality themes, concerns, and to a great extent the same and madness. While this approach is not a flaw in routines that were "problems" in the asylum .. itself, it does limit and constrict our understanding continue to be "problems" for patients, of the gendered approach and sub-text of alienist doctors, and nurses/aides today. Ripa writes, medicine. (Here we have a J>arallel with the work "Locking people up to treat them, and treating

55 them by locking them up were two indissoluble theoretical milieu, there ~e new recognitions and principles for the founders of psychiatry' [Pg. 87], misrecognitions, new dreams of the body ~- and on which "[c]oercion became a form of alternate somatic discourses, resurrections and therapeutic benevolence[ ...]" [pg~ 23] came to rest. insurrections, bodies changed, marked, and ·wild; From this basic paradoxical and apparently the body orphan, the cyborgian body, the contradictory logic, one can frame the daily and problematics and resistances of body texts written _mundane commonplaces of asylum life-- bribing and revised, bodies imaged and scarred, the body madwomen with new clothes, "testing" emotional imaginaries that become us. balance in, visits with ·husbands . and family The "mind candy" appeal of these multiple members, suppression of deviance as a sign of discourses sometimes obscures the nascent being cured, etc. Even the language the alienists possibilities of a more immediate political and used to interpret "moral treatment" ranged from material significance; witness, for example, the way honestly labeling it intimidation to the more in which ·some texts, through radically historicizing visceral term, "moral bloodletting" [pg 124]. One and recontextualizing medicalized discourses about can see that patients viewed (as they still do today) the body and the "therapeutic~ practices that follow staff as sitting around and gossiping [pg 144] and from such discourses, thereby problematize and that staff was worried about patients "splitting contribute to the. reshaping of those same staff"-- "'We want them to be ruled and not practices. Starving in the Silences is such a text. to rule", that doctors ( and today administrators) Australian healthcare worker and writer believe that managing the· staff is as difficult as Matra Robertson conducts a sharp and eloquent managing the patients [Pg. 141], and that interrogation of past and current understandings of .sometimes patients were restrained for waking up women who starve themselves,· and the in the· middle of the night and making too much interventions made on behalf of such women, noise [Pg. 125]. beginning with a terse, insightful exploration of the In fact, the concerns of and interpretations by cultural codings of eating and food: "Anorexia all the participants involved in asylum life arises in a culture that makes eating a problematic recounted by Ripa are echoed in the halls of conversion of nature by culture" (p.1). And so she mental health "units" today. The pragmatic begins by surveying the .ways in which diet and concerns of keeping things running smoothly and identity are mediated and melded in Western "making it through" a hospitalization, of mediating cultures -- food in and as language; normality and the ethicai · paradoxes of· care and coercion, of deviance in eating as established by medical· negotiating the intersection ofempathy, apathy and discourse; ideal body forms; food taboos; food antipathy, are all concerns that continue to choices culturally inscribed with gender, class, reverberates .through the psychiatry a hundred and/or ethnic. differences; and, related to this last years later. I believe sociologists should take this in complex ways, the coding of certain foods and opening in Ripa's historical narrative and explore eating .patterns (which, of course, include not of how psychiatric knowledge and discipline eating) with connotations ofsuccess or failure, self- (ideally and practically) continues to defme itself control, pleasure, beauty, greed, sexuality. on gendered ideals of the moral condition of the From .this point the text continues as a mentally ill and the specifically on the cultural many-faceted, intense and sustained meditation on assumptions of biological femininity. Ripa the mediations of power and· knowledge in the provides a starting point. (Willem W. production of meanings and the role of language in Brooke-deBock, Dept. of Sociology, Brandeis the discursive formation of gendered identiti~: University, Waltham, MA). "Language, full of socially engendered images of women's bodies, creates the possibilities from Robertson, Matra. Starving in the which women think and speak about their Silences: An Exploration of Anorexia Nervosa. embodiment...The woman diagnosed as anorexic is New York: New York University Press, 1992, 93 caught up in a chain of signification. ..How is the pp., 30.00 cloth, 12.9S paper. woman being treated for anorexia to find meaning With the emergence of postmodemism ·outside of the lay and medical discourse that ·• (whatever its disputed origins and contested defined her? Without an analysis of the way meanings), and an associated poststructuralist language constitutes meaning in society, a

56 discussion of self-starvation in women does not attempted to increase the knowledge about acknowledge the functions of, and the conflicts anorexic women in the face of male knowledge that inherent in, women's embodiment in a patriarch" has mostly omitted considerations of gender and (p.56). power. While this may challenge the discourse In this context, Robertson seeks to "shed within psychiatry, psychology and sociology, it does the layers ( as the self-starver sheds layers in search not challenge the fundamental assumptions about of herself) of a discourse which has created the form and function of the discourses anorexia nervosa and which its sufferers now themselves" (p.53). Robertson is particularly wary inhabit" (p.xiv). Two questions inform this of getting caught ,up in the "juggernaut of speaking particular quest. First, what happens to the for the woman being treated... who is seldom the woman who self-starves when she is asked to originator of the discourse, but its silent object" recognize herself within the disease model of the (p.54). behavior, within a patriarchal medical discourse? Her critique climaxes with suggestions and Robertson carefully charts the development of proposals for those who, like herself, work in tJ::ie both the medical and lay discourses about anorexia healing process with self-starving women, thought nervosa, as well as the genealogy of the term itself. she prefaces these offerings with the reminder that, Secondly, Robertson asks: . "What does the according to recent research, "no one treatment example of anorexia nervosa tell us about the consistently produces an improved outcome, nor experience and meaning of femininity in our has treatment outcome improved over the last SO culture? How does the female create herself years" and so she herself will not "promote any one within a masculine discourse?" (p.xiv). form of treatment (p.70). Her chosen allies in this project include What she offers instead is an orientation Levi-Strauss, Lacan,. Derrida, Chemin, Orbach, ( along with some concrete suggestions for Foucault, Irigaray, Cixous, Chodorow and other therapeutic practices) that is organized around the structuralist, feminist, and post-structuralist recognition that to heal, the "anorexic" must move theorist and writers. She skillfully appropriates from being the object of the discourses in which from these multiple perspectives those insights her identity is bound, discourses that directly or which illuminate the process by which self-starving indirectly perpetuate her self-starving behavior, to women move along a continuum from an already becoming the subject who co-creates alternate contradictoryandproblematic, largely male~defined discourses and self-understandings that release her " normality" to the (not unrelated) position of from an "anorexic" identity. A step in this "anorexia". movement is the realization on the part of the Never losing her focus, Robertson woman objectified as "anorexic" that she always introduces and condenses a complex matrix of already exceeds the bounds of the identity social and cultural theory, rendering it accessible to constructed for her, that she cannot be reduced to a broad range of readers and demonstrating its her "disease", that self-starving behavior does ·not relevance. At the same time, she remains critically exhaustively define her; that who she is lives in the aware of the disjunctures as well as the resonances, complexity of her desires and the multiple and the limits and implications of each perspective for shifting identities she (like but also unlike each of the project she is pursuing, self-reflexively bringing us) must negotiate as she learns, works, loves, and Foucauldian insights about discourse, for instance, struggles. into tension with many of. the feminist theorists This ambitious short text engages critically, with whom she identifies: "One of the major competently, and. passionately with its subject. I problems for feminist theorists is, that we describe hope that it will be honored as the creative ( and the oppression of women and thelimits of medical long overdue) intervention Robertson means it to discourse and then proceed to discuss the woman be. (Blaine Vogt, Sociology, Brandeis Unfyersity). and her symptoms within parameters drawn from that discourse... How can feminists challenge the Styron, William. Darkness Visible. New power .structures of male-stream knowledge York: Vintage Books, 1990, 84 pp. without at the same time becoming entangled in The title is apt. In 84 pages of vivid reductionist concepts of the object, i.e. the descriptive power, Styron makes clear the horrific anorexic? Orbach, Chemin and others have suffering endured by victims of the major illness,

57 depression, a form of suffering not as immediately shame, and blame - humanely dealt with, is one of apparent to the onlooker as for ·a patient with the major strengths of the book. It also discusses terminal cancer, Parkinson's, or any other others well known, who've suffered ,with this illness physically disabling or debilitating disease. and the ones whose lives were taken. He states From its mild onset, he describes his own that people in the arts, particularly ·poets, are descent into d!is living hell which drove him to · especially vulnerable to depression. There has prepare for self-destruction - rewriting his will, been some, recent work that questions this disposing of a private notebook, trying to write a assertion. suicide note, tearing it up - and in the brink, asking Causation is multiple and complex.. While for ·hospitalization instead. Previously, his own agreeing with the position held by most psychiatrist had failed to recognize his extremity, professionals today - that abnormalities in brain had advised against voluntary commitment "owing ·structure or biochemistry ·linked with genetic to the stigma I might suffer." factors are the primary cause-complicated by many In the hospital, he writes that he found the other social and psychological factors, subsequently, sanctum he needed; more than drugs or therapy, it ,he traces. his own depression to early childhood was seclusion and time. .within a few days, losses, thus seeming to contradict his earlier thoughts of suicide receded and he continued to statement. In general, he devotes less space to the improve during the nearly seven weeks spent there. use of drugs· and their efficacy in his recovery than one might expect given current treatment, other · Recovered from this ordeal which, despite than - to inveigh against ·the flagrant anti-depressants and therapy, had worsened for overprescription of sleeping pills and Halcion by many months prior to becoming acute, he decided · several of his doctors prior to the onset of his to share his experience with other sufferers and illness. their families and friends. He also discusses his forty year abuse of Given that ten percent of our population alcoh.ol which had to cease abruptly when he could will suffer asignificant depression at some· time in no longer physically tolerate alcohol. 11Suddenly, their life, that 30-50% of those recovered from the great .ally which for so long had kept my severe depression will suffer one or more demons at bay vanished." The depression followed recurrences, and that 15% of those hospitalized for within. a few months. . Yet he never questions depression will commit suicide, Styron's account is whether such abuse damaged his brain's function a valuable addition to the literature since his is enough to act as an important precursor. such a ·lucid, thoughtful and beautifully crafted · His account. ends on a happy note which is work. Phrases like "a veritable tempest in ·the reassuring. However, this reviewer wishes that brain" capture the reality of its devastation more Styron had spent more time describing his recovery viscerally than 'depression' which loosely describes - the ascent from Hell - it would have been useful a range of moods swinging from 'mild' to 'deep'. to all interested. In. The Broken Brain, Dr. Nancy And Styron rightfully argues that 'madness' or C~ Andreason points out that for many, the 'melancholia' or some newly coined word should be memories of the pain doesn't fade and the fear of· .substituted so as not to iessen the gravity of the recurrence continues to haunt them. What was illness through language. Often the s:ufferer is Styron's own experience? captiously advised by others to 'snap out of it' or Despite these few reservations, Darkness 'use willpower' - as though the victim has some Visible is a courageous and valuable contribution choice in the matter when in actuality the illness is to rendering madness an illness that can be talked an invasive enemy who has taken c;ontrol of the about openly, freely, without shame or stigma, by stricken one. those whose lives have been affected by it. "We He also points out that it is a mistake to parents of the mentally ill are a tongue-tied, self- blame a suicide for his act. of self-destruction, castigating, silently grieving subculture• wrote .because having experien~d the unendurable pain' Sascha Garson in NEWSWEEK, April 13, 1987. himself, Styron understands how op.e ·can. be No longer need this be so. William Styron has propelled to it. Compassionately, he also seeks to performed' a · public service. (Tema Nason, remove the guilt of those close to the victim for Sociology, Brandeis University.) not preventing the death. This aspect - the guilt,

58 Susko, Michael A., ed. Cry of the Invisible. how the recent universal movement away from Baltimore, MD: The Conservatory Press, 1991, 334 atheism and organized religion, is being redirected pp., $16.95 softcover. toward direct spirituality, we can see that Cry of the Invisible explains why our humankind is no longer satisfied with a primarily society is moving towards deadness and potential technological, materialistic world. Thus, I think it destruction. Michael Susko, the editor of this can .be fairly said that the cry of the invisible is book, shares with us the stories of several dozen .really the cry of the world. As the reader · individuals who have been disenfranchised and listens to the various stories in this anthology, marginalized by mainstream medical, religious and he/she becomes painfully aware of how many academic systems that are losing their humanity mental health professionals are not interested in and soul. These recipients of society's indifference stories that cause them to acknowledge the failure are the spokepersons of this book: people who are of psychiatry. There are few fields in which the homeless and survivors of psychiatric hospitals. lack of professional consensus is as great as in Susko edits their stories with compassion mental health. We are confronted with different and integrity. He attempts to classify their stories theories regarding· how and why psychopathology into five sections: 1) Wandering (homeless people); develops, what mental illness actually is, and which 2) Invisibility; 3) Wounded since Childhood; 4) therapeutic approaches are effective. Symptoms Quest; and 5) Advocacy. While many of the and disorders for which no specific etiology have stories overlap and do not always fit neatly into the been found are described and treated as psychiatric designated categories, this attempt at classification conditions. And people manifesting these is generally useful. At the same time, one can't symptoms are given a diagnosis so that their help but make a comparison between Susko's treatment will be paid for by insurance. These classification and the stages of the Hero's Journey diagnoses more often than not prove to be by Joseph Campbell. The categories that Susko unreliable; studies have demonstrated that they identified as "Wandering" and_"Invisibility" parallel often are related to a particular clinician's the first step of the Hero's Journey - that of orientation, a client's gender and/or socioeconomic "Separation." "Wounded since Childhood" and statu~, as well as other idiosyncratic factors "Quest" reflect the hero's struggles and non- (Rosenban, 1973). The traditional psychiatric view ordinary experiences in other realms. Finally, the - which tries to. base itself on the -medical model - last part of the Hero's Journey which entails focuses on the biochemical conditions of human: returning to the community might be compared to experience. Schizophrenia and by extension, all "Advocacy." mystical experiences are regarded as resulting from After reading the narratives, I agree with abnormal biological deficiencies. What this Susko on the three overriding factors that cause perspective overlooks is that frequently the fear mental illness: 1)invisibility; 2) the failure of the experienced by ·- the person undergoing an . mental health system to investigate or care about emotional· and/or spiritual crisis may produce a person's true story regarding deep wounds going biochemical effects in the brain and the rest of the back to childhood and/or drug or alcohol abuse body. The individual needs information, guidance and 3) the person's search for deeper meaning, or and support - not heavy psychotr9pic medication spirituality. Each of these factors can also be (Miller, 1990). applied to collective problems that currently seem Susko addresses this issue by stating that to be moving us to global destruction. Invisibility · "the person who goes on a "quest" can get lost, and can certainly be applied to the poor and find himself in the psychiatric system - a system disenfranchised world wide - whether they be which treats any spiritual phenomenon as starving people in third world countries or the symptomatic of a neuro-chemical imbalance~" persecuted and abused women and children who And 'Theodora", one who speaks to us in are .found in every socio-economic group and in this book states "the psychiatric drugs don't stop every country. The failure of the mental heal_th the pain, but stop the scream of the pain." system, I see as reflecting every other authoritative Many of the individuals locked in strucµire and bureaucracy that eventually forgets psychiatric hospitals today would have been the its mission and becomes more interested in its own prophets, sages or healers in other times and other power and self-interest. And fmally, as we observe cultures. Today they suffer because the society

59 / that they ·live in is afraid to look . beyond the sages of another time, another place. It is too bad material, ath~istic and mechanistic values that are that he had to suffer· as he did. Perhaps the slowly draining the life energy from our planet. nineties will move us into a new millennium where In summation, I would like to· share from we can see ·and learn from the wisdom of Joe the story of "Joe Green" - one· of the speakers in Green. And if we will begin to respect and Cry of the Invisible. Joe actively began reading support the invisible heros and heroines on their . spiritual material very intensively. He read books quests, perhaps they can learn something from us on Buddhism and Hinduism. He also studies also ... and we would all then have so much to gain. ·t, organized religions - Christianity, Judaism and Islam and began to meditate .for several hours ·Thank you 'Michael Susko for leading the everyday. Unfortunateiy, he did not realize that w~y. (Judith S. Miller, Ph.D., Beaver College) BIO: there should be restraint demonstrated in this Dr. Miller specializes in assisting people to access process and that one should receive guidance from non-ordinary states of consciousness_ and then a spiritual teacher. works with them around integrating this material in "I started to repeat a mantra saying it ways that can be transformative. mentally under my breath for hours - then for two or three days in a row. Fantastic things happened REFERENCES to my consciousness: colors were more vivid and lively; they danced and glowed. I would see .my Rosenban, D. (1973) "On Being Sane in perceptions incre3.$e as I repeated the· mantra, Insane Places", Science, 179-250. proving it was working. Because I was under the Miller, Judith (1990) "Mental Illness arid · spell of the mantra's positive effects, I was unaware Spiritual Crisis: Implications for Psychiatric that I was acting erratic." Rehabilitation." Psychosocial Rehabilitation ·Joe was hospitalized by his girlfriend and Journal, Vol.· 14, No. 2, 29-46. found himself on a stretcher. "My wrists were \. shackled down and a restraining strap was over my· · Smith, Mickey C., (ed.) A Social History of back. I sort of knew where I was, but I didn't the Minor Tranguilizers: The Quest for Small want to believe it. It was too horrifying. A heavy Comfort in the Age of Anxiety. The Haworth dose of liquid Thorazine three times a day Press, New York 1991. 26S pp~, $14.9S softcover. contnbuted to my disorientation. I was scared, Published originally in 198S with the title confused, not able to see, and wondering why I was Small Comfort: A History of the Minor treated the·way I was." Tranquilizers, Smith's work reviews ··the Joe Green has been drug free for nine pharmacological discovery and development of years except for that one month period when he tranquilizers, trends, their prescription, use, and was hospitalized. He is in good mental health with marketing. He focuses in particular on the debates no more episodes up to the present day. He still spurred by the invention and spread of these drugs pursues the spiritual quest, buLat a slower rate, -- in ~he lay press, among scientists, physicians and being careful not to imbalance the his system. "now legislators. is focus on the controversies over the I know that if anyone, ·no matter how sane they human or social implications of the minor are, pursues this· discipline at too fast a rate, that tranquilizers is well chosen, and reflects a· wider they can end up in a mental ward." concern with the nature and meaning of medical Joe now realizes he is not the Messiah, but intervention in American society. By placing the he still believes .he is part of God in his sour and debates over the potential µtlsuse of tranquilizers perceives his true inner identity with the "Big God." at the center of his analysis, he captures the "The reality of God is· beyond our ability to talk complex network of social factors affecting.medical about 'it, we just talk about concepts. We can't intervention, including the influence of the drug really· grasp the unfathomable ·God, the unknown manufacturing· industry and the regulating role of fo~ of the universe, the all and everything. I the state. believe along with the Hindus that animals, Yet, while remarkably rich in detail, and humankind and G_od, indeed the universe are one while the data he ·draws on are both complex, ·totality." . . interesting and useful, they are mostly presented I \believe "Joe Green" could be orie of the rather interpreted. What his social history gains in

, 60 detail, it lacks in overall theoretical perspective. difficulties involved in settling the former inmates Most conspicuously, his analysis is largely void of of two large mental hospitals in the London area. any conception of the role of ideology and He introduces the notion of Utopia, an imagined domination in society. this enables ·him, for future society in which problems are resolved and example, to conclude one chapter with the everyone lives happily ever after. The move to cryptically neutral statement: •in any case, the •community care" has seemed to some an ideal formal .mechanisms that society uses to deal with solution, for\ both patients and society. its problems have not been unaware of the minor Deinstitutionalization - a dreadful word O has tranquilizers• (p. 156). Nowhere is this more become the acceptable gospel or myth of today, apparent than in the chapter"Social Issues", where virtually unchallengeable in certain quarters. he discusses the imbalances in tranquilizer use The first three chapters of Tomlinson's between women and men without any reference to account provides a review of the history and power imbalances between ·the sexes in society at attempted realization of this ideal in the United large. Like the sociologists he .has chosen to cite, States and Britain, with further examples from he explains sex differences in drug use either in mainland Europe. Even from this broad terms of naturalistic assumptions of femininity and perspective the process of closures can be seen to masculinity or in terms of power neutral sex-role abound in contradictions and confusion. American · theories. Against this background, his assertion in readers may fmd instructive the British experience, the prologue that "the minor tranquilizers where central policies originally based largely on represent an opportunity to examine the complex cost cutting have, not surprisingly, lacked the interaction between medical innovation and the allocation ofadequate resources at the local level. social structure" (p.3) seems somewhat misleading. Mass unemployment has meantime worsened the Many sociologists of health and illness would also prospects for vulnerable people who are launched, have a difficulty accepting Smith's rather strict relatively unprotected, into society. distinction between the realms of the medical and The second half of the book is devoted to the social, and argue that even the most 'object~' a detailed case study of the actual transfer of scientific findings on mental health always contain patients from Friem and Qaybury hospitals, a social dimension. following a period of much disagreement among · As a whole, however, Smith's social history doctors nu~s and management. The response to of the minor tranquilizers does raise many closure from the localities which would bear the important questions concerning the social aspects brunt of the transfers is also carefully spelled out. of medical intervention. His focus on the debates · Finally the author asks. what happened to the surrounding the minor tranquilizers is informative, patients?" In the analysis that follows it is and he does draw in considerable depth upon a significant that very few appeared to have drifted commendable number of sources (such as mass into vagrancy, most being installed in small hostels media coverage, scientific· studies, medical or homes. However, there was a lot of grieving advertising and Senate hearings). Still, it is up to accompanying the departure from familiar settings. the critical reader to place his fmdings in a larger The author urges us to be sensitive to 'rites of perspective, and reflect further upon the use of passage', which were in fact totally denied or tranquilizers and the nature of political and played-down in this case. In the end many people medical influence, and on conceptions of the came to be settled in mini institutions. But it was mind/body relation in western society. (Katarina concluded that the beneficial aspects of a far from Wegar, Sociology, Brandeis University). ideal situation prevailed. Utopia remains · unrealized in England. (Una Maclean , Tomlinson, DylaQ, (ed). Utopia. Edinburgh). Community Care And The Retreat From The Asylums. Open University Press, Milton Keyes ••••••••••••••••••••••••••o••••••••••••••• Philadelphia, 1991, 176 . pp., $29.95 softcover, $79 .00 hardcover. Nancy Scheper-Hughes (U California- The author has been a research sociologist Berkeley) has been awarded the 1992 Eileen in a Team for the Assessment of Psychiatric Basker Memorial Prize for her book, Death Services and so gained close knowledge of the Without Weeping: The Violence of Everyday Life

61 in Brazil, published by the University of California that we can define in our words, our experiences,· Press (1992). Scheper-Hughes was nominated by our strengths, our pride and our paths to recovery Marcelo Suarex-Orozco (U California-San Diego), and empowerment. By developing our own ·who wrote in his letter of nomination: language and a survivor-driven knowledge base, we 'This ·important .new book paints the ate continually rediscovering and integrating human face of what is now called the Brazilian awareness of our power as consumers and Decade of Destruction. Whereas the most· recent survivors. pµblic outcry is oyer the systematic destruction of · Our recovery process is both reflective of, the Amazonian rainforest, Nancy's book takes on and essential to, the ongoing growth of our work. the. arguably more urgent task of engaging the Through mutual support we have learned to human suffering, hunger and death in the context become experts in out own self-care. We are ofwhat was once called, in a particularly Orwellian reaching out to both the •grass-tips" (known twist, the 'Brazilian Miracle.' · movement leaders) and to the grassroots of out 'This book is medical anthropology in the society. We welcome people of all colors, grand tradition. It is daring, moving, indignant; ethnicities, sexual preferences, philosophies and rich in data, powerful in ethics and bold in theory. other aspects of social diversity to participate in · It is the product of one of the most fertile, brave the activities of the center. and controversial anthropologists ofher generation The National Empowerment Center exists toiling ~ver the rich products of a long-term to facilitate communication, dialogue, networking research commitment to the problem of scarcity, and community building between individuals and maternal thinking and child death in Northeast -groups. throughout the country. Our center · Brazil." djstributes existing information, yet we are also Scheper-Hughes is the fourth person to actively engaged in generating and synthesizing new win the $1000 Basker Prize, which is given annually information. We are convening phone conferences by the Society for Medical Anthropology for on topics . which have been generated by superior research in the area of gender and health. participants. These conferences are also available Previous winners are Emily Martin, · for The on audio cassettes. We are also setting up an Woman in the Body, Joan Jacobs Blumbers, for extensive computer 'bulletin board to provide· Fasting Girls, and Faye Ginsburg, for Contested · information and networking. Our consultants, staff Lives. and advisory board travel widely and speak frequently to audiences across the country. "Alternatives 1993", a national conference which our center is organizing, will be held August 17-22, 1993 in Columbus, Ohio. We- are available to receive phone calls, during regular business hours (lO am to 5 pm, E.S.T., Monday through Friday)~ At all other The National Empowerment Center is times please leave a message on our answering thriving with hope, passion, ·creativity and machine and someone will get back to you. We excitement. We are helping to build a dynamic and can give you information over the phone about · · interactive community of people who .have been local self-help resources, upcoming conferences, diagnosed with mental illness. We have opened materials in our extensive data-base, and a number this center to share our experiences as a diverse of other topic areas. We always welcome your group of mental health consumers, ex-patients, and ideas and suggestions for improving and expanding psychiatric survivors. We are convinced that the center's programs and service. You can reach genuine improvement in the quality of out lives, our center by calling us . at 508-685-1518 · empowerm'¾nt and recovery are possible for every (Consumers/Survivors who cannot afford the long person who has been diagnosed mentally ill. distance charges can call us at 800 POWER 2 U or Historically, our experiences and lives have 800 769-3728). You can also contact our center by been suppressed in a culture of silences and shame. faxing us at 508-681:-6426, or by writing to us at: We· see that our primary task is to break that The National Empowerment Center,. 130 Parker silence and cornn:iunicate with each other. We feel Street, Suite 20, Lawrence, MA 01843.

62 Family Centered Support: Now and in the The essential element of all PIAN Future, by John Siegel, M.S. and George H. organizations is the participation of families, Wolkon, Ph.D. (John Siegel is the Executive consumers and professionals who know and Director· of PPSF and the Director of Special understand the needs of 'persons with disabilities Projects for the Mental Health Association in Los and who understand the nature of the particular Angeles County. George Wolkon is a clinical disability. All PIAN organizations have ,three professor at the School of Medicine, University of additional elements: Southern California and on the board of directors 1) a capacity to develop a written plan of the Mental Health Association in Los Angeles. with a family or relative to implement now or in County.) the future which sets forth those activities and Any . family who has lived through the services that the family wishes to ensure for their tragedy and misery of having a son or daughter relative; become seriously disabled, either physically or 2) a financial mechanism ( a pay-as-you-go psychiatrically, has worried about who will reach fee schedule and/or some type of trust for future out and be there for them when family members payment) which can be used to pay for the services no longer can~ Parents and other family members outlined in the care pl~; and are often primary caregivers for persons with 3) the identification and linkage to a severe disabilities. Parents may manage their provider of service which can ensure that the plan money, monitor their health care and make· sure is implemented and services are actually provided they· have a safe place to live. Parents may be the now and/or in the future. only personal support for an individual with· a The organizational structure of PIAN disabling illness. Parents frequently function as organizations is a not-for-profit corporation with a "case managers" and at times are the last, if not 501 (3) (c) status. They each have a set of only, safety net for the disabled person. operating by-laws and family members ·on their What happens when the parents are no board of directors. PLAN organizations must be longer there? When they are no longer able to set up and run like a business in order for families provide care and support? Relieving this concern to feel comfortable and be willing to invest their is the primary mission of the Guardianship and hard earned resources on behalf of their disable Trusts Committee of the National Alliance of the relative. Mentally Ill (NAMI). Recently this committee · California's Proxy Parent Services received a community support services grant from Foundation (PPSF) is an example of a PIAN the National Institute for Mental Health to organization. P,PSF, a non-profit corporation, is develop .a National PLAN (Planned Lifetime run by a board of directors, of which, according to Assistance Network) Network across the country. its bylaws, a majority must be AMI family The Network is in the process of: members. PPSF has a services plan that provides 1) establishing a national clearing house care and support now and in the future for its and technical assistance strategy; clients. PPSFs solid legal documents protect 2) . defining and establishing a model clients' public benefits. The PPSF program PIAN organization based upon the designs and provides peace of mind to parents, siblings and the characteristics of 10 states who have ·established disabled client. PLAN organizations; The PPSF program offers a personal 3) distributing information about future professional assessmen.t of a family's needs and care planning to all NAMI organizations and then creates an individualized service plan for the parent support groups for other disabilities; client. Services include: helping the person become · · 4) developing methods for marketing and more self-sufficient, obtaining and maintaining publicizing PLAN concepts. The Network is government benefits, ensuring appropriate seeking to establish Plan type organizations in all · ·psychiatric, medical and dental care, providing 50 states. While the Network is being spearheaded timely assistance in time of crisis, finding the by NAMI, most PLAN organizations are not just person if they run away or become homeless, )- focused on serving people with psychiatric assisting the person in developing social contacts disabilities. They are interested in serving all and joining in recreational activities, enriching the disabled groups. person's life, providing relief for family caretakers.

63

' . If the family currently is iib need of bring enjoyment to others. We will express the assistance or simple wants a· rest from caring for truth, with all the controversy it entails, for we their adult relative PPSF first assesses the needs want to clear away the roots of our oppression. At and resources of the family .and client and then the same time, we will remain non-polemical, never prepares a services plan. A pay-as-you-go quarterly losing sight of our more radical mission as· artists, · plan is negotiated and PPSF then contracts with a which is to create a state of consciousness that lifts reputable mental health agency to provide us beyond considerations of stigma, bigotry, and caregfyers (proxy parents) who act as stand-ins for fear. Altered States.will, with the inner.language family members. If the family is concerned about of aesthetics, communicate an awareness that can care int eh future PPSF has two plans: 1) A family change even the psychiatric mindset. It is our goal -may select their own trustee for the "special needs ·to promote this awareness. For information write: trust" of their relative. This trustee can then Altered States of the Arts, c/o Gayle Bluebird, interact with J>PSF to provide pay-as-you-go 4249 Bougainvilla Dr., Lauderdale By the Sea, FL services for as long as desired; or 2) The family can 33308. use PPSFs Trust· Plan. PPSF's Special Needs Trust has been carefully constructed to protect the Artists for Recovezy--A new arts project public entitlements of the beneficiary. This Master created for and by artists who have been clients of Trust has a licensed corporate trustee. Under the mental health system - 3721 Midvale Ave., PPSFs Trust Plan the family also signs a Contract· Philadelphia, PA - Contact Connie Schuster. which empowers PPSF to make all decisions, based on the parents' or trustors' written guidelines, The Center for Community Change regarding disbursements and services for the through Housing and Support ·is a national beneficiary. · research, technical. assistance and training For more information write to PPSF, 1336 organization, located at the University of Vermont, Wilshire Blvd., 2nd Floor, Los Angeles, CA 90017- Department of Psychology. It is funded primarily 170S or call John Siegel at (213) 413-1130. by the National Institute of Mental Health's For more information on the National (NIMH) Community Support Program, the Plan Network contact the National Plan Network National Institute on Disability and Rehabilitation Oearinghouse, National Alliance of the Mentally Research (NIDRR), and contracts with states and Ill, 2101 Wilson Boulevard, Suite 302, Arlington, other organizations. Its mission is to build a society Virginia 22201, or call 703-S24-7600. without stigma for . people with psychiatric disabilities. Contact University of Vermont, Dept. Altered States of the Arts is a nationwide of Psychology, John Dewey Hall, Burlington, VT network of creative people who are survivors of 05405-0134, (802) 656-0000, FAX: (802) 863-6110. the psychiatric system. Our purpose is to promote the arts as a vehicle for social change and personal Dendron News - a ·news magazine devoted empowerment. We. recognize that, through the to "breaking the silence about psychiatric ages, creative artists have been called "crazy," and oppression." Available back issues include; Racist that today many gifted persons are labeled Psychiatry is fascism in '90s. Excerpts from "mentally. ill" and thereby denied freedom of Breggin's Toxic Psychiatry. Mental Health workers expression. We believe that the "madness" of our as allies. Shock protests July 14, '91; Special triple altered states is a part of human nature to be issue: Ken _Kesey Interview. Gulf War psychiatry. validated rather than suppressed~ We embrace the Shock campaign info, resou:rces, petition. How-to idea that I madness dwells within the creative reach allies, hold meetings. Movement marks 20th process, just as creativity is sequestered within birthday; FDA rubber stamping shock. Brazil madness. We believe that true art is by nature ' psych. control. Alternatives '90 protest. Zap their uplifting and enlightening; it is neither µ-eatment lies about shock! Support-In; Shock News. nor therapy, but it is nevertheless healing and Mental freedom posters. Resources; Chapter from therapeutic. · · Kate Millett's new book. Shock cover-up. US . We seek other mad people with a talent Supreme Court approves forced drugs; Special that is original and a message that is genuine. Our double issue on taking action: Kate Millett te1ls her projects are designed to help ourselves and to story. Psychiatric racism blasted. Oozapine:

64 Kinder and gentler brain damage? For complete listing and more information contact: Dendron News, published by aearinghouse on Human Rights & Psychiatry, P.O. Box 11284, Eugene, OR 97440-3484. An Annotated Bibliography The National Association of P§.Ychiatric on. Persons with Mental Illness Survivors is an organization of and for "mental patients". Some of NAPS me~bers are currently in the mental health system. Others have been out David Pfeiffer for years, and still others are friends and Suffolk University supporters. Boston, MA 02108-2770 Our . purposes are broad enough to encompass the concerns of a wide spectrum of Ananth, Jambur; Vandewater, Steve; people, yet specific and objective-oriented. Our Kamal, Moffaque; Brodsky, Annette; Gama!, Reda; intention i~ to have a powerful impact at the Miller, Milton. Missed Diagnosis of Substance national level--on mental health decision-makers, Abuse in Psychiatric ·Patients. Hospital and governmental officials, the media, the public, and Community P§.Ychiatry; 1989; 40: 297-99. each other. For more information contact: NAPS, Based upon a study of 75 randomly chosen Box 618, Sioux Falls, SD 57101. patients in an acute ward of a California state hospital, the authors conclude that drug abuse and Self-Help Research Centers - In 1990 the addiction are more common in psychiatric patients National Institute of Mental Health funded Self- than is generally diagnosed. Only 2% of the Help Mental Health Research Center at the diagnoses were picked up in the emergency room University of Michigan. One of the goals of the and 16% upon admission to the state hospital. Research Center was to disseminate information The acute psychotic state of the patient usually about self-help mental health research. For more prevented the taking . of an adequate, detailed information about the Michigan Center contact: history. A follow-up evaluation when the patient Tom Powell, Center for Self-Help Mental Health is more cooperative is recommended. Research & Dissemination~ School of Social Work, University of Michigan, Ann Arbor, MI 48109- Back, Jonathan P. Requiring Due Care in 1285. . the Process of Patient Deinstitutionalization: Toward a . Common Law Approach to_ Mental Health Care Reform. Yale Law ·Journal; April The Well-Being Programs, Inc., located in 1989; 98(6): 1153-72. Southern California, promotes the overall wellness The important role which "due care" must concerns of people diagnosed with severe mental play in the process of deinstitutionalization. illnesses through client-centered research, training, program development and evaluation, and public Breslau, Naomi. Psychiatric Disorder in · education programs. It is principally concerned Children with Physical Disabilities. Journal of the with the causes, attributes, and enhancement of American Academy of Child.P§.Ychiatry; 1985; 24: well-being of clients, in contrast to the more 87-94. conventional approach of focusing on mental Author compared a sample (n=304) illnesses and disability. Through national disabled (cystic fibrosis, cerebral palsy, distnbution of educational materials, professional myelodysplasia, multiple handicaps) children ages training, and consultations on ·consumer projects, 3-18 years with a sample (n=360) children of same this organization is offering new approaches to age group. Disabled children were more likely to combat stigma and discrimination. For more .have a psychiatric disorder especially those with information contact: The Well-Being Programs, brain involvement, but severity of impairment did Media Education Task Force, 24844 Newhall Ave., not have an effect. Disabled children with a #3, Newhall, CA 91321, (805) 254-3744. psychiatric disorder . were socially isolated and showed aggressive behavior outside of the home.

65 Brown, Hilary; Smith, Helen. Whose Grumet, Barbara R. The Changing Role of "Ordinary Life' Is It Anyway? Disability, Handicap the Federal and State Courts in Safeguarding the & Soclen,; 1989; 4(2): 105-19. . Rights of the Mentally Disabled. Publius; Summer A trenchant review of community care 1985; 15: 67-80. policy and normalization from the feminist Some· state courts had a very good record viewpoint showing the parallels between clients and in the protection of rights, but developments on women in the ways in which they are viewed and the federal level have changed the picture. treated which results in common· oppression. Strategies· for change are discussed and the Haas, Peter J. A 'Comparative Analysis of inconsistencies of the values of individualism, State Mental Health Policy. Journal of competition, and self~reliance (upon which most Management Science & Policy Analysis; Summer community· care policy is based) are shown to be 1989; 6(4): 8-27. incompatible . with the integration of disabled ·M~ntal health policy is seldom analyzed people into. the community. from the state perspective and the author discusses why. He develops a model consisting of four Currie, Raymond F.; Trute, Barry; Tefft, simultaneous regression equations predicting Bruce; Segall, Alexander. Maybe on My Street: outcomes and demonstrates that state mental The Politics ·of Community Placement of the health policy is linked to various state policy Mentally Disabled~ Urban . Affair.; Quarterly; variables.. , December 1989; 25(2): 298-321. A discussion of the political aspects of Johnson, Ann Braden. Out of Bedlam: establishing commup.ity homes showing how . The Truth About Deinstitutionalization. New attention to details can facilitate the process. York: Basic Books; 1990. · Deinstitutionalization was never planned, Durham, Mary L; La Fond, John Q. Back· but happened because of financial reasons. It has to the Asylum: The Future of Mental Health Law nothing to do with patient need. In order to cut in the United States. New York: Oxford University the costs of institutions for the states and to Press; 1992. increase revenue for the drug companies, patients There is a 'shift from protection of were medicated and then could be discharged. At individual rights toward what is seen as community the same time it was idealistic and a great social · rights in mental health law. experiment even though we are still trying to figure it out. Effects of Group Homes on Property Values. Mental and Physical Disability Law Kayser-Jones, Jeanie; Kapp, Marshall B. Reporter; 1985; 9: 309. Advocacy for the Mentally Impaired Elderly: A Press release from the Mental Health Law Case Study Analysis. American Journal of Law & Project indicating that there is no negative Medicine; 1989; 14: 353-76. relationship between a group home and property Using a case study the authors discuss the values in a neighborhood and giving references to role of the advocate, their selection, their n~ssary supporting research. qualities, and their responsibilities. Elderly persons should. be encouraged in self-advocacy. There . Group· Homes for Mentally Disabled should be communication between the advocate People!· Impact on Property Values in Westchester and the elderly person or persons who knew the County, New York. White Plains: Michaelian elderly person well. Training is needed · for Institute for Sub/Urban Governance, Pace advocates. State law needs to specify the . University; 1988. . responsibilities of the advocate. The report concludes that group homes are not physically distinguishable from other homes .· Kivnick,- Helen Q. Disability and in the neighborhood; that there is not· a more Psychosocial Development in Old Age. frequent change of ownership of homes in the Rehabilitation Counseling Bulletin; 1985; 29: neighborhood; and that property values .are not 123-34. affected. Examines both the impact of a disability

66 on the psychosocial development in old age and 13: 82-87. the role that psychosocial development plays in The article identifies the major legal, coping with a disability, the author concludes that health, and financial issues confronting persons psychosocial resilience and vitality are necessary for with AIDS-related mental illnesses starting with the older persons attempting to cope with a disability. question ofmental competency. He concludes that even though only some persons with AIDS will Llnk, Bruce; Cullen, Frances T.; Struening, develop mental illnesses, all persons with AIDS can Elmer; Shrout, Patrick E.; Dohrenwend, Bruce P. benefit from life services planning. A Modified Labeling Theory Approach to Mental Disorders: ·An Empirical Assessment. American Parry, John. The Supreme Court Fashions Sociological Review; June 1989; 54: 400-23. New Boundaries for Invol~ntary Care and Thomas Scheff, Being Mentally Ill _(1966), Treatment. Mental and Physical Disability Law linked the emergence of mental illness to being Reporter; May-June 1990; 14(3).: 198-202. labeled as such. Critics attempt to refute him and This article is an explanation of two recent they also downplay the role of social factors like Supreme Court cases. In Washington v. Harper, stigma and stereotyping. These authors propose a 110 S. Ct. 1028 (1990), the Court said that the modified labeling perspective which says that if it right of a state prison inmate to refuse treatment does not cause mental illness, it certainly does is limited if the inmate is mentally ill, is dangerous produce negative outcomes. In our society, to self or others, and. if the treatment will be persons with a mental impairment are stereotyped medically beneficial. In Zinermon v. Burch, 110 in a negative manner. The more a person with a S.Ct. 975 (1990), the Court ruled tha~ a mentally ill mental impairment believes that he/she will be person unable to give informed consent who was devalued and discriminated against, the more they committed by state officials using the voluntary will feel threatened. Three strategies are used: commitment procedures could sue the officials keep treatments secret, try education, withdrawal. under 42 USC 1983. The author is quite critical of Empirical support is found for this approach. the opinion in the Harper. case.

Lyon-Levine, Martha; Levine, Martin L.; Pelletier, John R.; Rogers, E. Sally; Zusman, Jack. Developments in Patients' Bill of Dellario, Donald J. Barriers to the Provision of Rights Since the Mental Health Systems Act. Mental Health Services to Individuals with Severe Mental and Physical Disability Law Reporter; 1985; · Physical Disability. Journal of Counseling 9: 146-53. Psychology; 1985; 32: 422-30. Since the passage of the Mental Health A report on a survey of 86 advocates (67 Systems Act of 1980, there was little change in of whom were disabled), 157 rehabilitation state statutes on patients' rights. Only 13 states counselors, 94 rehabilitation administrators, 323 have made changes and only Hawaii included all mental health administrators and professionals, and the ~mmended ones. (An additional comment 145 severely disabled persons about barriers to the listing a fourteenth state is to be found in the same delivery of mental health services to severely volume on page 379.). disabled persons. There was considerable consistency among the various subsamples as to the Malleo, P.A. Making Non-Discriminatory barriers. The most serious barrier was the lack of Fitness-for-Duty Decisions About Persons with accessible public transportation and mental health Disabilities under the Rehabilitation Act and the outreach services which were then necessary. A Americans with Disabilities Act. American Journal moderate to substantial barrier was the limited of Law & Medicine; 1990; 16: 279-304. knowledge and skills of many mental health Discusses how psychologists can make professionals regarding severely disabled persons. defensible fitness-for-duty decisions and remain Severely disabled persons are an underserved within the ADA and other guidelines. group .

.t Parry, John. Life Services Planning for Pelletier, John R.; Rogers, E. Sally; Persons with AIDS-Related Mental Illnesses. Tourer, Shari. The Mental Health Needs of Mental and Physical Disability Law Reporter; 1989; Individuals with Severe Physical Disability: A

67 Consumer Advocate Perspective. Rehabilitation Definitions, Eligibility Criteria, and Recommended Literature; 1985; 46: 186-93. Procedures. Journal of Disability Policy Studies; A survey of 86 advocates (67 of them 1991; 2(2): 49-60. disabled) on the needs and barriers to providing The 51 state and DC definitions of mental health services to severely disabled people. emotionally disturbed ch:lldren and behaviorally Identified barriers were lack of transportation, lack disordered children are quite varied and different. of fmancial resources, attitudes of disabled persons Eligibility for services is also very different. They and their families . toward mental health all differ from federal defmitions. professionals, and the lack of accessible service locations. · Turner, R. Jay; Wood, D. William. Depression and Disability: The Stress Process in a Rose, Stephen M.; Black, Bruce. Advocacy Chronically Strained Population. Research in and Empowerment: Mental Health Care in the Community and Mental Health; 1985; 5: 77-109. Community. Boston: Routledge & Kegan Paul; A sample ( n = 989) of disabled adults ( ages 1986. 18 to 91) living in ten counties in Ontario were Sets forth a community based mental interviewed. It was found that this population health service for deinstitutionalized adults based experience. high levels of depression, almost twice on ideas of empowerment. that of the general population. More symptoms were found in women, urban dwellers, and younger Schonfeld, R. L. "Five-Hundred-Year persons. A sense of personal control and the Flood Plains" and Other Unconstitutional existence of social support were negatively related Challenges to the Establishment of Community to depression. Residences for the Mentally Retarded. Fordham Urban Law Journal; 1988; 16: 1-98. Whitley, M.P.; Osborne, O.H.; Godfrey, The author is an Assistant Attorney M.A.; Johnston, K. A Point Prevalence Study of General in New York. The article discusses the Alcoholism and Mental Illness Among Downtown impact of state statutes and local ordinances upon Migrants. Social Science & Medicine; 1985; 20: community residences after the Qeburne Case 579-83. including limitations on the number of persons A study which showed that many of the living in a community residence, quotas and deinstitutionalized mentally ill who live in distances between · community residences, local downtown areas of large ·cities now share the authority notification, and limitations which other characteristics of the previously established vagrant homes do not have placed on them. The author population. The sample was mainly white males in concludes ( among other things) that many of the their thirties, 40% never married, over half had statutes and ordinances are unconstitutional. attended high school' and had labor skills.

Staff Report on the Institutionalized Mentally Disabled and a Response from the Justice Department. Mental and Physical Disability Law . Reporter; 1985; 9: 154-57~ Excerpts from the full Staff Report which was requested by Senator Lowell Weicker. The report documents the ongoing serious abuses of the rights of mentally ill and mentally retarded persons under state care due to lack of staff, their training, and resources. It reopens the charge that the Justice Department is ignoring th~ Civil Rights of Institutionalized Persons Act.

Swartz, Stanley L.; Mosley, William J.; :1 -Koenig-Jerz, Georgianna. Emotional and Behavioral Disorders: An Analysis of State

68 THE SOCIETY PAGES to arrange a meeting in Seattle.

Susan Foster, Secretary 1993 Membership Renewal/Member Directory Society for Disability Studies By now, all SDS members should have received The focus of this edition of "The Society Pages" is their second notice regarding membership renewal on our upcoming annual meeting in June. We for· 1993. This is the last notice you will receive!

I hope all our readers--members and non-members Please fill out and return your renewal form to alike--are able to\attend! Ifyou are·not a member Sharon Barnartt as soon as possible. of the Society for Disability Studies (SDS), we - invite you to consider joining our group. SDS is a Vote for New Board Members nonprofit scientific and educational organization established to promote interdisciplinary research· This spring, we are voting for three new members on humanistic and social scientific aspects of for the SDS Board. You should have received a disability and chronic. illness. Fm: further ballot with a list of candidates and accompanying information on SDS, contact Sharon Barnartt, biographical statements. . Please be sure to cast Membership· Chair, Department of Sociology, your votes and return the ballot to Kim Smith, 26 Gallaudet University, 8th and Florida, NE, Salisbury Road, Brookline, MA, 02146. Washington, DC 20002; or ca11 ·her at 202/6S1- S160; or Bitnet at SNBARNARIT@GALLUA. Program Ads--Again!!

Accessibility Task Force You should have recently received information regarding placement of ads in the 1993 Annual. In the Winter DSQ Society Pages, the work of the Meeting Program. We need your help if this is to Accessibility Task Force was described and be a successful effort. Please consider placing an feedback solicited from SDS members. As noted ad! If you have questions, please contact Susan in that issue the goals of this Task Force are (1) to Stoddard, Info Use, 2560 Ninth Street, #216, propose an accessibility policy that assures that the Berkeley, CA 94710, phone 510/549.;6520 (w). Society is physically, sensorially, programmatically, and professionally accessible, (2) to draft meeting 1993 Annual Meeting accessibility guidelines, and (3) to .develop a pro- active plan to anticipate needs for new accessibility The Sixth Annual Convention of the Society for accommodations and to re~pond to new requests Disability Studies will be held June 17-19 at the as they arise. (Please refer to the Winter DSQ Embassy Suites Hotel in Seattle, Washington. You Society Pages for more detail on the work of the should have already received hotel and meeting task force.) registration forms. Please fill them out and send them in as soon as possible. Advance registration Originally, feedback was invited through March 1. for the conference will be accepted until at least That deadline has been extended through June 1. May 25. Forms can be faxed or e-mailed to Feedback can be given by phone, fax, or mail, and anyone who needs them. should be directed to Dr. Devva Kasnitz, 2800 7th St, Eureka CA, 95501, phone 707/443-1973 (Voice The Embassy Suites is making every effort to meet and Messages), Fax 707/445-8180 (A1TN Collage the needs of all conference attenders. Included in 4-9713). Please note that the address and 1 the registration packet are requests for information voice/message phone number are. different than about the type of accommodations that are needed those listed in the Winter DSQ. The fax number in guest rooms, etc. Please be sure to include this is the same. information with your hotel registration.

. Ifyou are unable to send your response by June 1 Formore information regarding local arrangements but will be at the meeting in Seattle, you can also and registration, please contact Marci Catanzaro, · give your· feedback to Devva in person at the . University of Washington, Department of meeting. Please call her at the above number prior Physiological Nursing, SM-28, Seattle, WA 98195,

69 phone 206/685..3222 (w) 206/S22-8336 (h), Prevalence of Chronic Illness or Disabling (Internet) Conditions in Young Children in the 1991 [email protected]. Longitudinal Followup to the 1988 National Maternal and Infant Health Survey" The Program Chair is Mitchell P. LaPlante. He Simpson, Gloria. "Childhood Disability: can be contacted at the Department of Social and Definitions and Data Collection" Behavioral Sciences and Institute for Health & Burgstahler, Sheryl. "Computing .Services for Aging, University of California. 201 Filbert Street, Disabled Students in Institutions of Higher Suite 500, San Francisco, CA 94133, phone (41S) Education: The Results of a National Survey" 788-8915,. BITNETnNTERNET , address . "[email protected]." 12:15-1:30 Lunch

Three full days of 'sessions are planned covering 1:30-3:00 Concurrent Sessions health care reform, personal assistance services, children, civil rights, teaching disability studies, Session One: The Enactment and Implementation disability policy studies, consumers and of Disability Rights Legislation professionals, politics and policy; disability DeJong, Gerben. "Americans with Disabilities Act: statistics, self-determination and independence, A Case Study in Bipartisanship" women's issues, National Archives, .mass media, Worthington, Bob. "Are Businesses in Compliance film, performing· arts, novels, attitudes, peer and with Title 1 (Employment) of the 1990 Americans family support, chronic illness, AIDS, participatory with Disabilities Act" action research,. sexuality, eugenics, disability O'Day, Bonnie. "Future Disability Legislation culture, vision and hearing loss, special education, Comprehensive Solutions or Political Satisficing" developmental disabilities, and the disability Mudrick, Nancy; Asch, Adrienne. "Protections movement. The following preliminary program is Against Disability Discrimination in Employment: subject to change. · The Record and the Issues"

Session Two: Experiences in Teaching Disability 'IHURSDAY, JUNE 17, 1993 Studies ' Franks, Beth. "The Long Shadow" 7:30-9:00 Breakfast & Registration Lashley, Lee. "Curriculum Infusion: New Blood for Old Subjects" 9:00-10:30 Plenary Session: Health Care· Reform Linton, S; Mello, Simi; O"Neill, John. "Conquering and Disability (Speakers TBA) the .Resistance to Disability Studies in the Academy" 10:45-12:15 Concurrent Sessions 3:00-3:30 Break Session · One: Research on Health Insurance, Disability, and Personal Assistant Services 3:30-S:30 Concurrent Sessions Beauregard, Karen. "Examination of Premiums, Benefit Coverage, and Pre-existing Condition Session One: Panel. Educating Tomorrow's . Causes in Private Health Insurance ·Policies Leaders: Planning for the Future of Disability Covering the Disabled and Chronically Ill" Policy Studies · Altman, Barbara. "Impact of Health Insurance on Steve Brown, Moderator. Panelists: Simi Litvak, the Use and Cost. of Health Care Among Irv Zola, Kay Shriner, Kate Seelman, Sara Watson Working-age Persons with Disabilities" Kennedy, Jay. "Personal Assistance Services Session Two: Consumers and Professionals Program and Policy Issues" Kovalsky, Abby. "Adaptive· versus Traditional Modes of Therapy" Session Two: Children and Youth with Disabilities: Gold, Gerald. "Will You Be Transferring" Drivers ·1 Definitions, Prevalence Estimates, and Services and Passengers in an Urban P~a-Transit System" Teitelbaum, Martha Ann; Kogan, Michael. "The Yoshida, Karen. "Uncertainty in Spinal Cord

70 Injury" Mental Illness and Functional Limitations Brandt, Robin. "User Control and Vocational McNeil, Jack. "Census Bureau Data on Persons Rehabilitation Services: Setting Standards and with Disabilities: New Findings and Old Questions Assessing Performance with Examples from About Validity" Hawaii" Queen, Susan. · "Functional Limitations and Salsgiver, Richard; Mackelprang, Romel. "Persons Disabilities in The Last Year of Life" with Disabilities and Social Work Practice: Barker, Peggy. "Disability Related to Mental Historical and Contemporary Issues" Illness in the U.S. Adult Household Population"

S:30-6:30 Reception: Meet theBoard of Directors 10:45-12:1S Concurrent Sessions

6:30-7:30 Teaching Disability Studies Session One: Issues in Self-Determination and Irv Zola, Convener Independence Simi Linton, Moderater. The Disability Studies Anderson, Pete. "Oral Histories Abstract: The Project, Hunter College, N~ York, New York Struggle for Social Justice by People with The session will focus on the construction of the Disabilities" term "Disability Studies~" a term which is conceived Tusl~r, Anthony. "Self-determination, People with of in different ways both within SDS and outside Disabilities, and the Alcohol and Drug Problems in the organization. We will discuss the implications the Disability Community" · of the various definitions for the mandate of DSD . Kasnitz, Devva. "Age of Onset and Personal as well as for other agendas that can be served by Disability History as a Variable in Disability formulating a working definition. Of particular Research and Theory" interest is the incorporation of Disability Studies Field, Sharon. "Development of a Conceptual into the higher education curriculum and on the Model of Self-Determination for Persons with diversity/multicultural agenda. Disabilities"

8:00-9:30 Evening Workshop . Session Two: Women with Disability, Mothers of Disabled Children, and Feminism · Politics and Policy: Using Clinton's "Third Way" to ·MacGugan, Kirk. "Woman and Disability in the Find Common Ground ; Late 19th Century" Sara Watson, Moderator. Panelists: Kay Fletcher Reinelt, Qaire. "Representations of Gender and Schriner, Marjorie Baldwin, Bonnie O"Day, Bonnie Disability in Women"s Life Stories" · Tucker, David Pfeiffer Wickham-Searl, Parnel. "The Personal Narratives of Mothers of Children with Disabilities: A Feminist Critique" FRIDAY, JUNE 18, 1993 O'Tool, Corbett Joan; Bregante, Jennifer. "Identifying Barriers to the Inclusion of Disabled 7:30-9:00 Breakfast Women in the International Women's Movement

9:00-10:30 Concurrent Sessions 12:1S-1:30 Lunch

Session One: Employment Patterns and Careers 1:30-3:00 Concurrent Sessions Baldwin, Marjorie; Johnson, William; Watson, Sara. · "The Employment Status of Persons with Session One: Panel. · "Disability Policy Research: Disabilities" · Where do We Go From Here?" Woodill, Gary. · "Barriers to Professional Moderator: Katherine Seelman. Panelists: Jane Employment of Persons with Disabilities" and West, Mitchell LaPlante. Discussant: Irv Zola. Reliability" Goodrich, Beth; Stem, Virginia. "Access to Session· Two: · Panel. "The National Disability t Engineering: The Demographics Component" Archives: A center for the collection, preservation, and dissemination of disability history, culture, and Session Two: Disability Statistics, Estimates of scholarly works." Panelists: Dias, Stephen;

71 MacGugan, . Kirk; Chadwick, Patricia; O"Hara, Session One: Peer and Family Support Susan. Schlesinger, Lynn. "'There are Worse Things Than Being Dead': Images of Disability and Interest in 3:00-3:30 Break Support Networks by Interviewees .in a study of chronic pain" · 3:30-S:30 Concurrent Sessions Martinez, Kathy. "AIDS and Disability: ·A Peer Approach Toward Support" Session One: Mass Media, Film, Performing Arts, McDonough, Peggy. "Women and Labor. Force and Novels . Activity: The ·Relative Effects of Disability, Work, Ferris, Jim. "Public Performance and People with ·and· Family 'Circumstances" Disabilities" · Yamada, Joanne. "Rokuchan: Portrait ofDisability Session Two: Chronic Illness ;and Disability in· in a Culture Other than Our Own" Adults . . Gershon, Hannah. "Reasonably Deaf: Television"s McK.enna, Margaret. "Constrained and Confined: 1Representation of Deafness" · The Illness Experience of Arthritis" ·Wainapel, Stanley. "Disability in the Works of Chandler, Elissa. "HIV/AIDS & Disability--A New Charles Dickens" Topic for Disability Studies and Policy" McKee, Teresa. "Images of Disability: . Mixed ·Linn, J. Gary. "HIV Disability and Mental Distress Messages" in Women" Dyck, Isabel. "The Changing Lifeworlds of Women Session Two: Attitudes Toward People with with Disabilities: Experiences of Living and Disabilities Working with Multiple Sclerosis" Hahn, Harlan. "Disability and Physical Differences: An Alternative Paradigm for Political Research" 10:4S-12:15 Concurrent Sessions Makas, Elaine. "MIDS-life Changes: The Updating · of the Modified Issues in· Disability Scale" Session One: Participatory Action Research McDonough, Hugh. "Dominant Models in the Litvak; Simi. 11A Case Study of· Participa~ory Study of Attitudes Toward Disability' Action Research: Personal Assistance Services Antonak, Richard. "Validation of the Research at the World Institute on Disability' Error-Choice Test of Knowledge About Epilepsy' Marshall, Catherine. "Researcher as Advocate: An Hinchcliff Pelias, Mary. "Uncertainty Reduction in ·"Outsider" Perspective Initial . Encounters Between Persons with Regarding Research Involving American Disabilities and Their Dyadic Partners" Indians with Disabilities" Bruyere, Susanne. "Participatory Action Research: S:30-6:30 Business Meeting Its Application to Implementation of the Americans with Disabilities Act of 1990 at the 6:30-7:30 Members Reception Local Level"

8:00-9:39 Evening Workshop Session Two: Eugenics and Sex and Marriage Among Amputees "Training Disability Rights Organizations Working Kelly, John. "Medical Prevention or Eugenic With National and Local Media on Covering Oppression? ·Historical Disability Rights Issues" Context and ContemporaryQaims-Mak.ing Mary Johnson and Susan Tari Hartman Regarding· the Selection of Fetuses and Infants with Disabilities" Brancato, Lynn. "When a Man is Attracted to You SATl.mpAY, JUNE 19, 1993 Because You are an· Amputee" Nattress, .LeRoy. "Some Impacts of Major Limb 7:30-9:00 Breakfast Loss on Marriage~

9:00-10:30 Concurrent Sessions 12:15-1:30 Lunch

72 1:30-3:00 Concurrent Sessions And Last, But Not Least

Session One: Communication, Culture, and Life Ifyou would like further information on any of the Satisfaction in Vision and Hearing Loss items in these "Society Pages" but don't know who Sharkey, William; Tamashiro, Paula; Haraguchi, to call, p,lease feel free to contact Susan Foster, . Gail; Mc Faddon-Robar, Tammy. "Hand gestures Rochester Institute of Technology, National of blind and sighted interactants: A comparison" Technical Institute for the Deaf, P.O. Box 9887, Qogston, John. "Media Use by Deaf Residents of Rochester, NY 14623-9887, phone 716/475-6137, a Midwestern Community" · (bitnet) SBFNIS@RITVAX. Haller, Beth. "The Voice. of Debate: Toe Little Papers of Deaf Residential Schools and Sign Language vs. Oralism in the Late 1800s" Easley, Polly. "Integrity and Life Satisfaction Among Deaf Elderly Women" .

Session Two: Panel. Di~ility Culture: Putting Philosophy into Practice Moderators: Brown, Steve ; Chelberg, G. Panelists: TBA

3:00-3:30 Break

3:30-S:30 Concurrent Sessions

Session One: Definitions, Research, Analysis, and Interpretation .in Special Education and MR/DD Gabel, Susan .. "Intelligence Testing as Body Ritual" Kabzems, Venta. "Alchemy and the Integration of . Students with Special Needs" Ferguson, Philip. "Taking Counts/Giving Accounts: The Qualitative Interpretation of Quantitative Data in Disability Studies" Rubenfeld, Phyllis. "Special Education: An· Institution whose Time has Come-and Gone" McGaughey, Martha. "National Day and Employment Service Trends for Individuals with Mental Retardation and Related Conditions"

Session Two: Three Studies of the Disability Movement Moore, Linda. "Developmental Disabilities in New Mexico: A Case of Non-Compliance" Bamartt, Sharon. "Frame Extension and the Passage of the Americans with Disabilities Act" Stratton, Alison. "Reclaiming Power: An Anthropological Perspective on, the · Gallaudet University Revolution of 1988" Schwa.mm, Jeffrey B.; Ford, Martha E. "The Consortium for Citizens with Disabilities: A Model Coalition"

S:30-7:00 Cosing Reception

73 Spring 1993 (Vol 13. No 2) Rethinking Mental Illness from the Insi~e Out

Table of Contents

Focus p.1

Coming Events p. 5

Retrospective p. 8

Call for Manuscripts p. 11

Media Clips p. 12

Op_pprtunities/Funding p. 13

Solicitation p. 15

Midsection p.16

Ongomi· Research p. 32

Teaching Disability Studies p. 42

Theses Abstracts p. 43

Disability Policy p. 44

Booknotes p. 45

Resources p. 62.

Bibliography p. 65

Society Pages p. 69

74