disability Vol 8 No 3
studies Summer 1988 quarterly
Irving Kenneth.Zola Managing Edi.tor: Joanne Seiden
DEAR READER, We are ·particularly FOCUS pleased with this issue because Needs and Opportunities: it represents a theme directly The History of People suggested by our readership. with Disabilities: , As you can see, many people have a lot to say _about by Paul K. Longmore H~storical Aspects of Dis- (historian, 1437-Avenue 47 #7; ability, and like the previous Los Angeles, CA 90042) issue on Self Help and Indepen- dent Living, we have had some· Social scientists have
/ stimulating editorial thoughts. been reconceptualizing· "dis- The Fall 1988 DSQ (dead- ability" as primarily a line September 1) will em- socially constructed. condi- phasize School-Age Children and tion, a social ~ole and themes such.as "mainstreaming." identity, rather than a series The Winter 1989 issue (deadline of medical phenomeha. Despite December 1) will be a generic considerable differences in one. Spring 1989 - (deadline etiology, people with a March 1) will deal with variety of disabilities have "accounts of the experience of shared a common social _· and chronic illness and dis- historical experience and have ability." In the pipeline confronted· a common set of are topics dealing with stigmatizing values. Yet "communication technology," little has been written about "religion and spirituality," the history of people with _and "sexuality." Some readers disabilities. ; -~ have suggested that it is time We need a comprehensive to do another issue on "aging examination of the social, and disability" ·and "media ideological, and political depictions." Please let us history of disabled people. know. And, to a·11 those who On one level, that, study have been sending us material should look at how policies, for these issues, a hearty institutional practices, and thanks! professiorial ideologies reflected and reinforced The Editors social values about disability. and prescribed disabled
1 persons' social roles. the triumph of . oralism coin- · It is probable that in the cided with intensified· '.pias. ·18th· century a majo~. shift in . against people with other beliefs about. "disal;,ility" and disabilities. By the late in societal responses to people 19th century, non-disabled with disabilities began in professionals had concluded. western Europe as one aspect of that the required degree of the age of enlightenment and normalization was impossible .. revolution. · Schools, institu- . for all but a few. People tions, ·and professions began to with disabiiities,increasingly be established to ameliorate came to be regarded as a not only their medical but also burden to themselves and their their social condition. Early families, an unproductive 19th century American reformers element of society, a drain on followed their lead. Schools, social resources. .societies, and professions "Expertsl' not only. ·proliferated to deal with adopted, but· promoted, a people with disabilities. pseudoscientific linkage Ultimately, ·their aim was to between disability and a wide "normalize" or control these range of social problems. The socially deviant groups. · statement quoted above at- . For instance, Harlan Lane tributing to deaf people a has recounted the paternalistic lack of moral or emotional assumptions of many 19th self-control expressed that century hearing "benefactors" bias. Other professionals of · deaf people. During the spoke of the "menace of the 1880s and. 1890s the .struggle feeble-minded," blaming them between oralism and sign for poverty, vice, and crime•. language became particularly· Likewise, an .influential ferocious, exposing the textbook in orthopedic virulence ·of prejudice against medicine had this.to say about deaf.people. Said one oralist: physically disabled people: "A "The deat-mute is by nature failur·e in the moral training fickle or improvident, subject of a cripple· mean~ the to idleness, drunkenness, and evolution of an individual debauchery, easily duped and detestable in character, a readily corrupted." Deaf menace and burden to. the .groups protested the assault on community, who is oniy too apt their language in vain. One to graduate .into the mendicant . opponent of sign asked: "Since and criminal classes." when do. we consult the patient Since normalization of on the nature of his treat- most disabled people proved to ment?" By 1900 the oralists be impossible, society must had triumphed throughout the protect itself by segregating western world. Schools purged all of the "defective", deaf teachers. Students were classes. Some were permanent- punished for signing. Worse, ly sequestered in institu- they were taught t9 feel tions. Others were shut out ashamed of being deaf. of society by means. of such Academic instruction gave way ordinances as Chicago's "ugly" to teaching speech. law which prohibited any The prejudice that lead to "person who is diseased,
2 . maimed, mutilated, or . in any Pennsylvania. Because of ·the way deformed so. as to be . an novelty of a. blind . peddler, unsightly or disgusting object ·customers initially bought· his or improp~r person to be goods, but .on his subsequent allowed in or on the public trips he frequently en~ ways or other public places in countered the view that he _this city"· _from e~posing should go on poor relief "himself to public view.II More rather -than 'trying to support disturbing, eugenicists lobbied hims~lf. His pamphlet '.fo~ state laws compelling attempted to counter that ·' sterilization of· deaf· people, attitude and to promote · blirtd people~ peo~le with education of blind people. developmental and other Courtney also sought out other disabilities. By 1931, more · blind· people and reported on than half of the U.S. had their activities and occupa- . adopted sterilization statutes - tions. His tract . offers. a . affecting some of· these groups. glimpse of a ' segment .of tne Professionals even suggested social landsca~e virtually that keeping some disabled unknown to historians. p•ople alive violated the laws Example #2: ·contrary. to and · processes· of nature which the intentions of hearing worked to weed 'out the unfit. · philanthropists, the graduates Proposals for euthanasia failed of 19th century manualist in the u. s. , -·· but· · iri Nazi schools created for themsel~es Germany tens of thousands of a signing· subculture with its disabled people' were~ put to own schools,· churches, newspa- death. pers, and political organiza- We need a ~horough tions. D~af leaders in France · expiotation· ~f this socio- and America debated proposals . political and ideological to establish separatist d~af history of disability~ But townships in order to ·escap.e that research must focus not hearing oppression once and only on the ittitudes and for all. . Subsequently, · 'the . practices ~f th~ majorit~ of National Association of the nonpisabled people,· it must· Deaf was founded in the u. S. als.o recount the ways in which to safeguard sign language anNew York City's League · efforts to reshape societal of th~ Physically Haridicapped, perceptions· of. them. ·Three an organization of disabled brief examples suggest the· .young adults, protested job possibilities for·this sort of discrimination in the munici- history. · pal· government and 'federal Example #1: Abram · Court- Works Progress Administration ney's Anecdotes of the Blind projects. . (1835) recounted his adjustment.· Courtney, the . deaf · to complete · blindness in his groups, and the . League · ·. were teens and twenties·. He became all attempting to fashion a a peddl~r who travelled through new social identity. They upstate New. York, Ohio·, . and were redefining "disability"
3 as: a social, economic, and even the Hidc,len ·History of ·Dis.abled · . political· condition, rather People," Reviews in American than simply a medical· or History. 15:3, September 1988, physical phenomenon. · As with pp. 355-364. . . other minorities, we tend to Lane, Harlan. When the Mind see disabled people as passive Hears: A History of the Deaf. ·victims of fate or history. New Yo+k, · NY: Random· :Hous·e, ·. These.. examples indicate the 1985. . importance of examining ways in. Tyor, Peter ,and Bell, Leland. which, individually or collec- caring· for the Retarded· in tively, they have been actors America: A History. Westport, in their. own history·. CT: Greenwood Press, 1984. · All of ·this represents a · vast and neglected nistory involving major changes in ~ocial · values and practices. COMING EVENTS We need to examine the inter- section of individual lives and A. July 11-22, 1988, 4th grogp histories with social ·Annual summer Series on Aging values and ideologies. How of the American soeiety on have values and ideologies Aging, Berkeley· Conference sh~ped the in~ividual and center,_ Berkeley, CA. 74 full- collective social careers of and half-day intensives in the people with disabilities? How following areas.: Concepts and have·. the disability minorities Issues in Gerontology, Alzhei- carved out maneuvering· room for mer's Disease, Family and themselves within the con- Caregiver Issues, Mental strai~ts of societal ideo1ogies Health, Health Pro;motion and and arrangements pertaining to Wellness, Administration and. them? How have they attempted Management, Long-term. Care, to modify social beliefs in Legal and Ethical Issues, order .. to · expand their social Clinical Issues in Geriatric power? Care, Special Topics in Aging. The recent work in deaf Contact: American ·Society on history by Harlan Lane . and in Aging, 833 Market St., San the history of people with Francisco,. CA 94103; 415/543~ mental retardation by Peter 2617. Tyer and Leland Bell draws upon the. voluminous published and B. July 20-25, .1988 ,. ii·cele..;, unpublished records ·of a. brate in 1 88 AHSSPPE and All variety of organizations, That J~zz," The· Assoc. of institutions, and individuals. Handicappe~ Student Services That m~terial comprises an Program in Post Secondary enormous body of untapped data. Edtication's 11th Annual In short, a wealth of. evidence Conference, Sheraton, New is available to enable his- Orleans, LA. .Focus: the . torians to reconstruct · the. latest technology and techni- forgotten history of people ques .in the field as presented -with disabilities. by vendors and applied on campus,.transition strategies, References learning disabilities, and . Longmor.e, Paul K. "Uncovering computerization. Contact: Jane
4 Jarrow, PO Box 21192, Columbus, OH- 43221; 614/488-4972 (Voice/- F. August 21-25 •. 1988, 8th TDD). World Con.grass of the Interna- tional Assoc. for the Sci.en-. c •. August 1-3.1988, Interna- tific Study of Mental Defi- tional Confe~ence on Social ciency, Dublin, . Ireland. . In Justice and Societal Problems, North America, contact: Dr. Leiden Center for the Interna~ Lou Rowitz, Univ. of Illinois tional Study of Social Justice, at Chicago, Sch. of Public Leiden, The Netherlands. Health, PO Box 6998, Chicago, Contact: DSWO Congress o~- IL 60680; 312/996-6620. ganization, Mrs. Gennie Elfering, Hooigracht 15, 2312 G. August 22-27, 1988, KM Leiden, The Netherlands. Sociologists for Women· in Society Annual Meeting, D. August 20-27. 1988, 16th Atlanta, GA. Contact: Gretta Quinquennial Congress of the Stanger, Sociology, Tennessee ·International Genetics Federa- Technological Univ., Cooke- tion, Ottawa,. Canada. Contact: ville, TN 38505. D~. L. F~rget, National Research Council of Canada, H. August 24-28. 1988, 83rd Ottawa ON KlA ORG, Canada. Annual Meeting of ~he American Sociological Association, E. August 21-23. 1988, Atlanta Marriott Marquis, "Contradictions and .Conflicts: Atlanta, GA. Of special note Building a Healthy Society," are: 1) Friday, August 26, 38th Annual Meeting of the 10: 3.0 am, -Medical Sociology Society for the Study of Social Section: "Sociology of ·Health Problems, Atlanta, GA. in America:· The State of· the Noteworthy is a special plenary Field" organized by ·Peter session "Health As a Coercive Conrad, Brandeis University. Value,·" Sunday, August 21, 2) Friday, August 26, 10:30 7:30-9 pm. Presentations am, Medical Sociology and include: "The Issue of Aging" ·Epidemiology Section: "The by Daniel Callahan, The Hasting Threat of Cooptation and the Center; "The . Issue of Repro- Promise of Coalition" by John duction" by Barbara Katz McKinlay, New England Research Rothman, CUNY-Baruch College; Institute ·and Sonja McKinlay, "The Issue of Disability" by New England Research In- Frederic Hafferty, Univ. of e;;titute; 3) Saturday, August Minnesota; Judith Lorber, CUNY- 27, 8:30 am, Medical Sociology Brooklyn College, discussant. Section: "Disability and ·Following the Plenary, a R~habilitation: The Intersec- _Welcome Reception (co-sponsored tion of Epidemiology and by SSSP and Society for Policy, 11 organized by Barbara Disability Studies) will be Altman, Univ. of Maryland; 4) held 9~10:30 pm in the Book Sunday, . August 28, 8: 30 am, Exhibit area. Contact: Barbara "Sociology"" of Disability" Katz Rothman, Soc/Anthro Dept.; organized by Caroline Kauf- Baruch College, CUNY, 17 mann, Univ. of Pittsburgh. Lexington· Ave. , New York, NY· Contact: ASA Executive Office, 10010; 212/505-5994. Dept. 0004, Washington,. DC
5 20073-0004. American Medical .Assoc •.· and 1 The Hastings Center, updating · I . S e ptember 2 - 9· , . 19 8 8 , genetic technology and Meeting· of the Rehabilitation discussing current thinking in International Assembly and 16th bioethics. on this topic. World Congress, · Tokyo, Japan.· Contact: 1-80-0/621-8335 (in Contact: Rehabil.itation· Illinois,. 312/645-4987). International, 432 Park Avenue, South, New York, NY 10016. N. September 26-27, 1988, "Sexual Exploitation of J. September 7-9, 1988, "SCI . · Persons with Disabilities, 11 a Rehabilitation: Enhancing the conference presented by the Quality of Life," The 2nd Office of Continuing Medical Annual Meeting of the American · Education, Univ. of Michigan 1 Assoc. of Spinal Cord Injury , Medical School . and Kenny Rehab Psychologists and. Social Foundation of Michigan, Ann Workers, Riviera Hotel, Las Arbor, MI, to discuss issues Vegas, NV. Contact: AASCIPSW, and develop strategies for 432 Park Ave. s., New York, NY preventing sexual. exploitation 10016; 212/686-6770. of disabled persons. It will. acknowledge and increase K. September 12-16, 1988, awa·reness of frequency and International conference on degree of sexual abuse; Wheelchairs and Special identify and examine methods Seating, Dundee, Scotland. of prevention; focus on · Contact: The· Secretariat, curritula, inte~vention Dundee 1 88, Duridee Limb Fitting strategies, therapy ahd Centre, 133 Queen st., Broughty· counseling services, informa- Ferry, Dundee, DDS lAG, tion, training and legislation Scotland. efforts. Contact: Gayle Fox, Ofc. of Continuing Medical L.. September 14-16, 1988, Education, Towsley Center-Box. National Science Foundation 0201, Univ. of Michigan Program for Deci~ion, Risk, and Medical School, Ann Arbor, MI Management Science Working 48109-0201; 313/763-1400 or l- Conference on Longitudinal 800/962-3555. Field Research, Univ. of Texas- Austin~ Prospective par- o. September 26-27; 1988, ticipants should send a vita "Focusing on the Potential, and 1-page statement· explaining Not the Di·sability," an their interest in participating -International ·Clinic, G'eorge by July 15, 1988. Contact: Mason University, Fairfax, VA. George Huber, Management Dept., It will examine the theme CBA 4.202, Univ. of Texas, "From. Rehabilitation to Austin, TX 78712. Independent Community Func- tion: The .Role of Physical M. September 22-24, 1988, Activity" as it relates to ·"Techno:J,.ogy and Ethics: Genetic fitness, education, employ- Screening, Gene Therapy and ment~ recreation, the arts, Reproduction--Developments and sports and community linkages. Implications," Denver, co. A Contact: Grace Reynolds, YMCA forum, sponsored by the of . the USA, Special Popula...;.
6 tions, PO Box 1781, Longview, Research, Honolulu, HI and on WA 98632; 206/577-0243e Maui, HI. Contact: Thomas Srull, Psychology, 603 E. P. September 28-October. 1. Daniel, Univ. of Illinois, 1988, "The Potentials of . Champaign, IL 61820. Medical Sociology," the 2nd International Congress of the u. October 17-18, 1988, European Society of Medical "Strategies for Effective·Cost Sociology, Zagreb, Yugoslavia. Control, " 2nd Annual National Contact: M. Mastilica, Andija Disability Management Con- stampar Sch of Public Health ference, Loew•s L'Enfant Plaza M$dioal School, Univ. of Hotel, Washington, DC. Zagreb, Rockefellerova str. 4, Contact: Washington Business 41000 Zagreb, Yugoslavia. Group on Health to IRDM, 102 Irving st., NW, Washington, DC Q. October 2-6, 1988, 20010, ATT: Misshay White or "Ethics, Justice and Commerce · Susan Dickinson at Institute in Transplantation: A Global for Rehabilitation and Dis- View," An Internationa·l ability Management, 202/877- Congress, Ottawa Congress 1196. centre, Ottawa, Ontario, Canada. Contact: Ethics, v. October 17-19, 1988, the Justice and Commerce in 1988 National conference on Transplantation, PO Box 3758, Family Bas·ed Practice, Boise, station c., Ottawa, Ont., ID.. Focus: trends and Canada KlY 4J8; 613/954-8733. policies in family based services, clinical and R. October 6-8. 1988, 15th practice issues, supervision Annual Historic Communal and management issues, and Societies Conference, Old evaluation and research in Salem, Winston-Salem, NC. family based services. Contact: Thomas J. Haupert, Contact: Jody Lubrecht, CASSP- Director, Moravian Archives, 4 Bureau of Mental Health, 450 East Bank st., Winston-Salem, West state st., Boise, ID NC 27101-5307. 83720; 208/334-5531. s~ October 9-12. 1988, w. October 20-22, 1988, "Approaches to Wellness: Health Colloquium on Representations Maintenance, Behavioral of Health, the State of the Sqience, and the Clinical Field, and New Developments, T~acher," Assoc. for the Nancy, France. Contact: Mark Behavioral Sciences and Medical G. Field, 40 Peacock Farm Rd., Education Conference, Sheraton Lexington, MA 02173. Rolling Green Conference Center, Andover, MA.. Contact: X. October 20-23, 1988, Ms .. Carol O'Neill, ABSAME, 6728 Society for th~ History of Old McLean Village Dr., McLean, Technology Annual Meeting, VA 22101 .. Hagley Museum and Library, Wilmington, DE. Contact: Larry T. October 13-19, 1988, Owens, History, Univ. of Annual Conference of the Massachusetts, Amherst, MA Association. for Consumer 01003; 413/545-2223/549-4773;
7 telecommunications messages at and Systems Research Centers, 413/549-1959. Lisbon, Portugal.. Contact: Bui Dang Ha Doan, FICOSSER Y,,. October 21-23, 1988, Coordinator, 60 Blvd. Latour i•women, Development and Health: Maubourg, F~75007, Paris, An Examination of the Connec- France.· tion. Between Socio-Economic Change and Women's Health in DD. November 3-5,. 1988, 8th the Third World," Women in Annual Meeting of the National International Development Academy of'Neuropsychologists, Conferenc~, Michigan State Sheraton World Resort, University. Contact: Rita s. Orlando, FL. C.ontact: Antonio Gallin, Director, WID Office, E. Puente, Psychology, Univ. 2d2 Center for International of North· Carolina-Wilmington,· Programs, E. Lansing, MI 48824- Wilmington, NC 28403. 1035; 517/353-5040•. EE. Novemb er 3 - 5 , · 1 9 8 8 , z. October 21-23, 1988, Canada's 1st National Co~- "Creating Social Change," ference on the Late Effects of Society for Applied Sociology Poliomyelitis, L'Hotel, 6th Annual Conference. Contact: Toronto, Ontario, Canada. Howard H. Garrison, Applied Focus: recent research into Management Sciences, Inc., .962 the assessment, diagnosis and Wayne Ave~, Silver Spring, MD treatment of persons ex~ 20910·. periencing the Late. Effects· of Polio; special report on· the AA. October 23-26, 1988,. 5th Post-Polio Clinic at West Park International Conference on Hospital, Toronto; discussion Augmentative and Alternative of how physiotherapy, O.T., Com1nuni'cation, Anaheim, CA. R.T., orthotics, bracing and Contact: ISAAC, PO Box 1762, chiropody can be used; discus- Station R, Toronto, onta.rio, sion of the emotional and Canada M4G 4A3. psychological impact of a 2nd disability; discussion on the BB~ Octob~r 31-December 9, use of good nutrition, pain 1988, "National Health Poli- and stress management and cies: Instruments for Implemen- self-help groups. Contact: tation,11· Study Seminar offered Shirley Teolis, Ontario March by.the Institute of Development of Di-es,· 60 overlea Blvd., studies, England. Applications Toronto, Ontario·, Canada . M4H are invited .especially from 1B6; 416/425-0501. officials in health and djvelop~ent planning and FF. November 9-13, 1988, admiriistration. Contact: "Sexual Literacy," Society for Chaii,nan, Teaching Area, IDS at the Scientific Study of :·Sex the university of Sussex, 31st Annual Meeting, Cathedral .Falmer, Brighton BNl 9RE Hill Hotel, San Francisco, CAo . England.·· Contact: Deborah Weins~ein, Exec. Director, ssss, PO Box cc. October 1988, Meeting of 29795, Philadelphia, PA 19117; the Forum for International 215/782-1430; or Bernard ·.·cooperation of Health Services Goldstein, Chair,. 19Se SSSS
8 :Annual Meeting-,. ·san Francisco There were many s.essions state Univ., Biology, ·1600 about various disabilities as- Holloway Ave., San ·Francisco, sociated with late-life, CA 94132; 415/338~1548. though almost· nothing a_bout the intersection of aginef and GG. November ,1 O-13 • 198 8 , life-long disabilities. · · I "Households and Communities," could .find nothing, for 21st Annual Chacmool Con- example, about cerebral palsy, ference, . Calgary, . Canada. polio, or spinal cord in- Contact: Programme -Committee juries. The· one exception (1988), Dept. of Arch., Univ. were papers and a spe.cial of Calgary, Calgary AB. T2N 1N4 interest group with which I am Canada; 403/220-5227. · involved on Aging and Develop- mental Disabilities. or- HH .. November 13-17, 1988, ganized by Matt Janicki, the Annual Meeting of the American Aging. and DD. interest group Public Health Association, has been very successful in Boston, MA. Contact: Kenneth . getting aging and DD on the Whittemore, Assoc. Dean, GSA agenda. There were about Administrative Health Sciences, ten different sessions related College of Health Related to aging and DD, ·and among the Professions, Medical University presenters almost everyone of s. Carolina, Charleston, SC knew everybody else, although 29425-2701. there were many new people who came to listen. DSQ . readers II. November 18-22, 1988.., 41st can turn this imbalance scientific Meeting of the around. ·We need to submit Gerontological Society of proposals for various panels America, San Francisco Hilton when GSA will be held in- San square, San Francisco, CA. Francisco. ·I would be inter- contact: GSA, 1411 K street, ested in hearing from DSQ NW, Suite 300, Washington, DC readers who are members of 20005; 202/393-1411. GSA' AGHE , and NCOA. As a group we need to let the leadership of. GSA know that RETROSPECTIVES there is more to life than late-life disabilities as- A. The 40th Annual meeting of sociated .with· aging. .(Tom The Gerontological Society of Rose, Montgomery College and America (GSA) was h~ld in National Assoc. for Senior Washington . in November, 1987. Living Industries) This was a ~ajor. event for gerontologists · (another is the B. · on. April 28, 1988, the ~eating of the· Association for Washington Business Group on Gerontology in Higher .Education Health's Institute for [AGHE] ·which. was·· in March) and Rehabilitation and Disability there were more· than 300 Management (IRDM) and The sessions. I only attended a Workplace Center of Columbi'a few, though I also reviewed University School of Social many abstracts. in .. the · social · Work held a meeting entitled science ·and social research "Current Research and Futur·e sections. Trends in Disability Manage-
9 ment and Employment of Persons went through the vocational with Disabilities." Its rehabilitation program ex- purpose was to bring together a perienced greater earnings variety of researchers, many upon return to work and working under grants from the required lower public benefits National Institute for· Dis- than those who did not use VR ability and Rehabilitation services. -R~;search (NIDRR), to discuss Finally, a panel of tneir work and predictions for researchers predicted that future research issueso companies would become more IRDM presented its involved in encouraging local research in progress, including managers to facilitate return a; 3-year study of corporate to work; research would disability policies; a project increase to investigate non- to build partnerships between medical factors that affect Centers for Independent Living return to work, such as family and their local business support and personal habits; communities; and surveys of rehab service vendors need to corporate use of allied health focus their services more professionals and case manage- directly on return to work; ment services to bring employ- companies would increasingly ees back to worke involve physicians in return . The .Workplace Center and to work; and a future labor the Human Resources Development shortage would increase the Institute (HRDI) of the AFL-CIO possibilities for modified discussed the potential for duty for disabled workers. Employee Assistance-Programs to (Sheila Akabas, The Workplace become involved· in corporate Center, Columbia University) disability management efforts; HRDiws efforts to encourage c. On January 15-16,- 1988, a unions to become involved in conference with an intriguing bringing employees back to title--"In Time of Plague: The work; and their joint project History and Social Consequen- to work with smaller companies ces of Lethal Epidemic (2-200 employees) to overcome Disease"--Session III "Case,, obstacles to return to work. Histories"seemed especially"!' Kenneth Mitchell, Director appropriate to this issue--was of the Internationa1·center for held to discuss how society Industry, Labor and Rehabilita- reacts to catastrophic tion, discussed his projects to disease. The planners bring Social Security recipi- expected to "consider plagues ents back to work; to rehabili- past and presentn with the. tate older, disabled workers; "intention to examine similar- and to apply the lessons ities1 untangle overlooked learned in disability manage- differences, and reflect.. ment for large companies_ to iUpon appropriate public small firms. response" to these calamities. Participants in the These are the descriptive ."Economics of Disability phrases used in their bro- ·Project" (Monroe Berkowitz, chure; unfortunately we could Dale Hanks, David Dean) not find someone who had demonstrated that workers · who attended the conference to
10 ce>mment on -i,t. Papers and Administration) discussed remarks from the chairs of the Federal "Guidelines for Access various sessions, 'however, will to Information Technology for be published by· Social Research Users with Disabilities" which (66West 12th st., New York, NY are designed to . ensure that 10011); Spring 1989. computers and other electronic office equipment purchased or D. · Seven speakers at . a leased by government agencies special ·session of the s·peech after October 1, 1988 are Tech 1 88 Conference on April accessible to individuals with 28, 1988 discussed some recent disabilities. For more uses of speech synthesis and information, contact session speech recognition· in assistive ·or~anizer, Robert Mills devices. There were also (Electronic Industrtes Fdn., papers concerning digital 1901 Penn. Ave., NW, Suite hear.ing aids and ·the govern- · 700, Washington, DC 20006; ment•s new guidelines for 202/955-5825). electronic equipment acces- .- sibility. Judith E. Harkins (Gallaudet Univ.) explained why SOLICITATIONS speech recognition, of all the technologies on the horizon, A. Claire Cassidy seeks has the most appeal to deaf references or· articles (old people. Leonard L. Anderson and new) on fatness and · (Cerebral Palsy Research Fdn.) obesity for a historical reported on a· study of speech review article on the anthro- recognition assistive devices pological research (biologi- for people having hard to cal, cultural and philosophi~ understand speech. John cal) on this topic. · Send to Trimble (VA.' Hines Rehab her at: Anthropology, Woods Research & Development ctr.) .Hall, Univ. of Maryland) spoke.on the use of talking bar College Park, MD 20742. c~de in teaching braille. David R. Weller (Bell Com- B. Linda Levalley Cervantes munications Research) described is conducting a survey of their prototype ''Telecommunica- practicing anthropologists tions Network for the Deaf" ·whose primary focus is on which employs voice recognition psychocultural therapy. These for automatic relay of tele- are anthropologists who phone messages between deaf provide direct_ care/therapy/~ p~ople using TDD systems and counseling/workshops to in- hearing persons. Richard, A. dividuals or groups. The Foulds (A·. I·. DuPont Institute) survey will assess methods, discussed recent developments techniques, training and in use of synthetic speech in employment status of practic- augmentative communication ing psychological anthropolo- devipes. Harry Levitt (CUNY) gists (clinical, counseling,. talked about the oldest therapeutic, anthropologists, application of spee.ch technol- etc.). Send to her at: ogy .· in assistive devices in Practicing.· Anthropologist, "Next Generation Hearing Aids." 7004 Montano NW, Albuquerque, Susan Brummel (General Services NM 87120. 11 Bureau of Census 5th Annual c. The Mandel School of Research Conference; March Applied· Social Sciences, Case 1989, Washington, DC. Western Reserve University Contact: David F. Findley, invites faculty members to send Conference Chair, Statistical copies of any original, Research Div. , Bureau of the published or unpublished census, Washington, DC 20233. papers, reports or research studies on the subject of B. · Abstracts are welcome for family caregiving for its 3- the 14th International year project "The Family Congress of Gerontology, June ~aregiving Projecto" The 19-23,. 1989, Convention material will be included in Center, Acapulco, Mexico. their data base about family Deadline: Julv 15, 1988. Must caregivers. Contact: Kathleen be accompanied by registration Fant, Coordinator, Family material. Contact: Congress Caregiving Project, Mandel Schu Secretariat, Jojutla No. 91, of Applied Social Sciences, Tlalpan CP 14090, Mexico, DF, Case Western Reserve Univ., Mexico. 2035 Abington Rd., Cleveland, OH 44106; 216/368-3945. c. Abstracts (theoretical, research, clinical, or perfor- D. Gil Portnoy seeks contact mance presentations) are with adult siblings of persons sought from the humanities, with disabilities for his PhD arts, health professions, and dissertation project. His 2- sciences for the Femiriist hour questionnaire asks: how do Conference on Menopause, May adult siblings relate to their 1989 at the Univ. of Kentucky, disabled brothers and sisters Lexington, KY, on the theme in alternative living situa- "Menopause Passage Into the tions; have family dynamics Second Half of Life." . changed once the siblings Deadline: August 1, 1988. entered adulthood and, if so, Contact: Carolyn s. Bratt, how; how do siblings of Alumni Prof. of Law, Univ. of disabled people feel about Kentucky,, College of· Law, changes in medical assistance, Lexington, KY 40506-00448. To guardianship, and politics discuss an idea prior to affecting their disabled submission: Gretchen LaGodna, brothers and sisters? Contact Assoc. Prof. of Nursing, Univ. him at 637 West Market St., of Kentucky, 606/257-5263. Long Beach, NY 11561; 516/889- 8237 eveningso D. Manuscripts for inclusion in the Sociology of Educa- tion's special issue "The CALL FOR PAPERS Sociology of the Curriculum" are sought by September L A. The deadline was June l, 1988. Especially welcome are 1988, but perhaps you can still papers providing historical, have your paper (on topics comparative, and political related to a broad range of perspectives, as well as a Census Bureau research in- wide range of methodologies terests) considered for the and perspectives. Send 4 12 copies to .either 1) I. Goodson, cal Science, Northwestern Univ. . of We•tern Ontario, University, Evanston, IL Education, 1137 Western Rd., 60208; 312/491-2648. London, Ontario, Canada N6G .1G7; or 2) M. Apple, Univ. of G. ·Papers are sought for the Wisconsin, Curriculum Instruc- 1990 ISA Congress (to be held t ion, 225 N. Mills st., in Spain) session, "Welfare Madison, WI 53706; or 3) J. Capitalism and the Health and Meyer, Stanford Univ., Sociol- Health care Crisis• " Contact; ogy, Stanford, CA 94305. Professor Vicente Navarro, The Johns Hopkins Univ. School of E .• Gary Albrecht and Judith Hygiene ·and Public Health, Livy invite· submissions of Dept. ·of Health Policy and m~nuscriptsH • that address Management, Hampton House, 4th disability and chronic ,disease floor, 624 N. Broadway, across. the life course for Baltimore, MD 21205-1901. Volume II of Advances in Professor Elianne Riska from M~dical Socicilogy to be Finland will organize a published annually by J~I session on "Gender and the .Press. It will . focus on Division of Labor in Medicine~ disability or chronic illness -cross-National Studies." as critical life events that shape and constrain the lives ·H. Manuscripts are welcome of individuals and their for Lifestyles: Family and families within and across all Economic Issues (successor to stages of the life course. Lifestyles: A Journal of They seek papers that provide Changing .Patterns), a journal the theoretical framework, dedicated to the link between empirical examples and/or the family and its economi~ methodological tools necessary environment. Contact: Charles to locate the social experience B. Hennon, Editor, Family and o~ disability and chronic Child Studies Center, Miami· illness within role transi- Univ., Oxford, OH 45056. tions, .life stages, timing and sequencing of social roles, I. Research on Language and parenting, and other develop- Social Interaction invites mental processes of human life. manuscripts on the relation- Deadline: December 1. 1988. ship between specific com'!!'" Contact: Gary Albrecht, Sch. of ponents or features of PUblic Health, Univ. of language or other sociai Illinois· at· Chicago, PO Box. codes, and the structure, 6~98 (m/c 923), Chicago, · IL dynamics, or functions of 60680; 312/996-5765. interactions. Contact: Robert E. s·anders, Editor, RLSI, F~ Law and Society Review communications, SUNY, Albany, invites papers·reporting socio- NY 12222. le·gal research on any aspect of legal intervention in the J. Food and Foodways, an family .for · a special issue on international, interdiscipli- law and the family. Deadline: nary, scholarly journal seeks March 5, 1989. ·. Contact: Guest short book reviews (500-1000 Ed,itor, . Herbert Jacob, Politi- words) and longer review 13 essays (15-30 pps.) on some substantive, problem/policy- aspect of the role of food in oriented studies on issues of human society or histoty. contemporary inter.est. Contact: Carole Counihan, Contact: Dan A. Chekki, Univ. Soc/.Anthro~, Millersville of Winnepeg, 515 Portage Ave., Univ., Millersville, PA 17551; Winnipeg R3B 2E9, Canada. 717/872-3575, 3544 (w), 717/394-484j (h). NOTE: -They will provide the books. OPPORTUNITIES: FUNDING, PROGRAMS K. The 'Journal of Postsecon- dary Education and Disability A. The Sociological Practice seeks manuscripts relevant to Association invites applica- the theory and practice of tions for the national providing services to disabled training fellowship program in students at the. postsecondary clinical sociology. Ap- .·1evel. Research and theory plicants ·must. be in good based articles as well as thbse standing of the SPA and have from a service providers point completed the PhD in Sociology of view are welcome. Contact: by. June 19880 Selected Kay· Lesh, Editor, JPED, 2502 N. candidates will be able to Ind.ian Ridge, Tucson, AZ 85715. take advantage of the clinical training program at st. L. The Sticial History of Vincent's Hospital and Medical Medicine, the journal for the Center in NYCo Contact: Julia Society for the Social History Mayo, Chief, Clinical Studies, of· Medicine, is published Sto Vincent's Hospital and April, August and December Medical center, o 'Toole Bldg, annually. It..,welcomes articles Room 602, 203 w. 12th st., New relating to all aspects of York, NY 10011; 212/790-S243. health, illness, and medical treatment, as well as with B. The National Institute on biological aspects of· normal Aging invites grant applica- life: with patients within tions for research on ·social, their economic, social •nd behavioral, and biological political· environments; and antecedents or consequences of with systems of health and· the differences in life welfare provision. Contact expectancy, health, function- editors: Dr. Linda.Bryder, The ing, and well-being of men and Queen's College, Oxford OXl women as they grow old. l • 4~W, · England, or Dr. Richard Researchable topics: how do s•ith, A11. Souls College, the differing roles of men and Oxford OXl 4AL, England. women over their lives affect' exposure to risks, health- M. .Manuscripts and proposals related vulnerabilities, and in sociology and related resultant health care and di$ciplines are sought for the quality of life? What models Garland Library of Sociology are most effective in fore- Series. The series is intended casting gender differences in to _provide a forum for the life expectancy? How, and publication of a broad spectrum through what mechanisms, do of significant· theoretical, older men and women differ in
14 ___ .,__ <
specific aspects of· cognitive · · F. The Easter Seal Research functioning? .Contact:. "Gender Foundation welcomes applica~ and· .. Aging ,11 Behavioral and tions for its research grants, Social Research, NIA, ·Building deadline December 15, 1988. · . 31/Rm 5C3 2, · Bethesda,· MD Beginning. in 1989 the· maximum 2089,2. . grant will. be ,·$40,000, with renewal evety 2 years. c·. The William T. ·Grant · Priority consideration given Foundation m~kes awards to. projects. me~ting standards annually to up to 5 ·research of scientific excellence and work$rs in the. field of relating· to se]:'.Vices provided children's mental health. by Easter Seal Societies. Awards are .for 5 years·, Recent projects: late.effects totaling $Y75,ooo, which of .poliomyelitis, attendant · in.eludes indirect costs for the care, communication .assistive institution .where the scholars . devices, etc. Applications ·work. Application.deadline for should identify ~esearch .1989. is Jtily 1, . 19~8 but. ·methods, including develop- perhaps you could · apply ·early . ment, refinement, · or . adapta- for 'i990. Contact: ·Robert J. tion of· technologies to ·Haggerty, President, William T. assess,. treat or manage · Grant Foundation,· 515 Madison disabilities and promote :Ave.,. New York,· NY 10022-5403. ·independent living. Contact·: Research Dept., National o·. The National Humanities Easter Seal Society, 2 02 3 W.. Center offers 35-40 fellowships Ogden Ave., Chicago, IL 60612; for advanced study in history, 312/243-8400, too 312/243- ·Philosophy, languages, and 8880. literature, classics, religion, histo~y of the ar~s, and.other fields in th~ liberal arts. CURRENT. RESEARCH Fell6w~hips a~e. fo~ the academic year,·· though a few may .A. The Center for Biomedical be. available for a single Ethics, Univ. of Minnesota, semester. Deadline· f~r 1989- Minneapolis, has initiated a 90: October 15 ,. ·1988. Contact: maj. or new research project, "A Kent Mullikin, Assistant New· Ethic For a Changing · ·· Director, .National :Humanities Health Care Environment?" The . Center; ·7. Alexander Drive, PO interdisciplinary research Box 12256, Research Triangle team of 20; led by Dianne Park, NC 27709-2256. Bartels as its interim chair, will review, analyze, and E.. For information on the Rue discuss the implications of Bucher Memorial Scholarship for changes in the health care research by a doctoral student, · environment on core health contact: R. ·Stephen Warner, values such as advocacy, chair of the Bucher Memorial autonomy,· and quality over the_ Committee, Sociology (m/c 312), next 12 months. During stage College ·of Liberal Arts and I, they will· examine the Science&, Box 4348, Chicago, IL .historical developments of the 60680; 312/996-3005. traditional health care ethic I ·and articulate· the challenges 15 .· to this ethic posed by changes D.~ In the Spring 1988 DSQ in the health care environment.· (p. 27-K) ,. we . published an In stage II (the next 12-18 incorrect phone number for The months), they will explore the Research and Training Center ch.anges, if any, that might be on Independent Living (UnivQ needed in the traditional of Kansas, AA207, Bristol ethic' or in the distribution Terrace, Lawrence, KS 66044. and financing ·of health care, The correct number is 913/842- and specify the new ethic for a 7694. changing health care environ- ment. The project anticipates a monograph and papers to be FILM CLIPS forthcoming. (edited report by Reinhard Priester, The . Center · we would like. to alert you to for Biomedical Ethics Newslet- another resource--the Film and ter, May 1988) Video Library of New York Universitye Their· collection B. Professor William McCagg represents nearly 50 years of (History, Michigan State U~iv.) documentary and educational is researching and writing filmmaking on topics such as: about people with dis~bility in anthropology, child develop- Eastern Europe and the Soviet ment, health care, the arts, Union. In 1985 he organized a · studies on aging, racial and conference on this subjett, the gender. differences, substance results .of which will be abuse, technology, among published in Disability in the others. It also has available Soviet Union, 1989, .University a special series~-e.g., Mental of Pittsburgh Press. He is Symptoms Series, Mother-Infant currently preparing a history Informational Series. For a of disabled people in Eastern free catalog, write: Film a·nd Europe in an attempt 1) to call Video Library, Ctr. for Media attention to a long-standing Services, Sch. of Education, tradition of holistic medicine Health,. Nursing, and Arts and disability education which Professions, New .York Univ., has thriven over the past 2 . 26 Washington Place, New York, centuries in Germany an the NY 20003; 212/998-5160. eastern parts of Europe but which is largely unknown in the The Center for Media Services West; and 2) to develop at NYU includ.es the· Television communications and a community Production Center which of knowledge between people provides nonprofit organiza- with disabilities in different tions· with a· full range of countries--Hungary, Austria, video production and telecon- .Czechoslovakia, Poland, ferencing services. Projects Rumania, Yugoslavia, and the are specifically ori'ented Soviet Union--seeking demogra- toward training, · informat.ion- phic· information, comparative al, documentary, and instruc- data about the history of tional videotape productions f) disability treatment and traces Call: 212/998~516,. of literary attitudes toward disabled people.
16 BOOK, ETC. NOTES
A. Berkowitz, Edward D. the present. Disabled Policy: America's At the core of the book Program for the Handicapped. are six chapters in which the New York~ NYl Cambridge author discusses the origin University Press, 1987, 280 and development of five pp . , · $2 4 • 9 5 • programs dealing with dis- With Disabled Policy: ability. In the income America's Program for1 th• maintenance area he presents Handicapped, Edward Berkowitz worker's compensation and the has given us a masterpiece. social security disability This is not an •easy' book insurance as two basically because of his comprehensive different 'generations' of approach and the painstaking programs.· He then covers what qetails with which he presents he calls the corrective legislative policy and the response, where he pits · the related (and at times not so disability rights developments related) practices in the · and the ·independent living field. But it is written in a program against the tradition~ clear and engaging style, al vocational rehabilitation superbly annotated and enricned system. by frequent references to the · Berkowitz not only shows political events of the past that "the purposes to which decades and to national society desires to put social figures, including many of the welfare policy have changed new indigenous leadership of faster than the programs the disability movement. designed to accomplish these Berkowitz sets forth quite objectives" (p. 227) but also clearly that he believes the emphasizes that "the nation -existence of a physical (sic!) concentrates too much of its handicap should not limit a money on granting tickets out person's participation in of the labor force and .gives society; that persons with a too little attention to the handicap must be protected from demands of the handicapped for employment discrimination by tickets into the labor force" vigorous enforcement of the (p . 2 3 o ) • In his final civil rights laws; that public chapter he clearly points to p_olicy must remove physical issues that need to be recog- barriers; that being hand- nized; legislation that needs ;capped 1?hould not be equated to be enacted; programs that with being helpless.· · He need to be .re-aligned or newly demonstrates that an underlying developed. · positive acknowledgement of the Together with Deborah validity of the disability Stone's The Disabled State and rights movement and its Gliedman ·and Roth's The irinovative program emphases Unexpected Minority: Hanci=° does not need to interfere with icapped Children· in America, a broadly gauged objective this book significantly analysis of the political, elevates the level of dis- legislative, administrative and course in a field that in professional concerns that have recent years has become more shaped the disability scene in widely recognized as repre- the past and still very much.in senting a challenge our
17 society cannot afford to of writing, a rating of the minimizeo (Gunnar Dybwad, overall attitude expressed in Heller School, Brandeis the work toward elderly University) people; and on each work: its target, genre, popularity, B. Berman, Lorna and Sob- setting, specified age of the kowska-Ashcroft~ Images and old people described, descrip- Impressions of Old Age in the tive attributes of the Great Works of Western Litera- elderly, mode of description ture, 700 BC-1900 AD: An and a brief resume focusing on Analytical Compendiumo Lewis- the role of the elderly ton, NY: The Edwin Mellen Press people. 1987, 399 PPou $69.95. To the extent that "great Based on their original literature" reflects the world analysis of the depiction of in which it was created, this elderly people in 4 7 worlcs of compendium offers a historical the 17th century French author window into society's view of La Fontaine, Berman and aging. On the whole, Berman Sobkowska-Ashcroft have and Sobkowska-Ashcroft record expanded their schema to a rather bleak picture, include 86 other authors and bleaker perhaps than they 220 other "great works" of realize, as when Wordsworth's Western literature. The book 09 pos;Ltiven rating is based on opens with a series of indexes. the fa.ct that though two of The first, a listing of 15 .his older characters "are not general attitudes toward aging without fault ••• the author and the authors who share them, pities and likes them never- give a good indication of what theless. 11 In any such coding, is to come~ Five of the there are bound to be omis- 91 attitudes 18 constitute nearly sions but in light of how many 95% of the codings with fully of the recorded "attributes" 1/3 in the category 00 negative., aa appear gender-related, the The next index is really an lack of a code for sex of the elaboration of this--over 200 older characters is especially specific attributes (more than disappointing. All in all, a 1000 with synonyms)--and however 0 this compendium is a again they seem heavily welcome addition--a far richer negative. The next 3 indexes-- data base than one has come to genre, century, and.nationality expect from such bibliogra- of author--did not seem phies0 (Irving Kenneth Zola) e$,pecially useful and more a reflection of the basic c. Bogdan, Robert. Freak sampling. Show: Presenting Human The heart the book, of Oddities for Amusement and course, is the annotated Profit. Chicago, IL: Univer- of referenceso Beginning with sity of Chicago Press, 1988, each book's current availabili- 328 pp., 79 half-tones, $29.95 ty, an entry lists the follow= hardcover. ing about each author: his/her Early in Freak Show, date of birth and deathl' date Bodgan relates possibly the of the work's original composi- apochryphal story of a tion, nationality, age at time tall Univ., of Texas student
18 Jack Earle's visit to the deviations from nature and Ringling Brother's circus thus attended to biologicalr sideshow. Spotted in the physical differences and audience by the show's manager; exaggerations and a panoply of Earle was asked, "How would you au giants," "dwarfs," hairy like to be a giant?" This women and hairless men, the question embodies the essential multiple-limbed, etc. As our point of Bogdan' s book; being social realities and modes of extremely tall is a matter of perception changed, so physiology--being a giant ultimately did our "apprecia- involves something more. This tion" for such exhibits. Nor "something moren is detailed in were all these changes an social history, case studies, unmixed blessing for the and several dozen vivid society and the freak show photographs. participants. Bogdan en- Firmly rooted in the courages us to look at the tradition of the labelling and pictures and not to be embar- social construction theorists rassed, for, as he notes, they of the 1960's, Bodgan considers are in many ways less upset- being a 'freak' neither a ting and intrusive than personal issue nor a physical medical illustrations. condition, but rather a matter Medicalization, which changed of social arrangements. This the perception from freaks of "organized exhibition for nature to diseases and popular amusement 19 and profit pathologies, also changed the had its heyday in the u.s~ perception from awe to pity between 1840 and 1940. From an and something (and somebody) accepted part of ~erican life not to be admired but to be when hundreds of such shows treated and preventede Though coursed the countryside, by the the pictures in the era of 1980 1 s their numbers had entertainment and medicine are dwindled to five. Many would both posed and controlled by say good riddance and wish others, the illustrated ads; theyad never existed~ Bogdan, whatever else they are, are however, claims that Hfreak prideful" In fact, so, too, shows" are not merely the dark are the stories behind the side of the history of dis- pictures, for according to ability but in what they tell Bogdan, their lives are not of American consciousness and the traditional ones of about the lives of their exploitation ('a la Elephant participants these nshows" come Man) but often quite the o~t as varying shades of gray.. opposite--voluntary participa- Even the two most general tion, economic profit, modes of exhibition tell us personal pride .. something.. He terms one In that respect, such "exotica" and emphasized depictions remind me of a creatures from strange, unknown documentary I once saw--"Not a worlds, a sort of perceived Love Story. " Though essen- cultural, physical difference, t i a 11y an expose of the as in ads proclaiming "the Wild pornography industry in the Man from Borneo" 11 The second UuS~, it also included the mode focused on perceived story of one insider who not
19 at all regretted her participa- of short essays on epidemic tidn. She felt. neither ex- diseases is a good example of ploited nor pitied but instead the latter school. It will considered herself .in show hold the attention of those business--well-paid, rewarded, curious about changes in in control of her life. As did surgical practice, the actions the moviemaker, Bodgan also has of important figures in the come to respe·ct those he. once history of epidemic diseases, might have thought of as only or technological reasons for exploited and oppressed. changes in disease frequency. He ends the book as he However, it will frustrate began it--with a discussion ·of those who seek a broader t~- ·banbing in 1984 of a analysis -of how the meanings sideshow at the New York State of disease change over time, Fair. While acknowledging that how politics and medical the freak show is · currently science influence one another, emblem·atic of the degradation or how epidemic disease·s have disabled people have experi- affected :day-to-day life~ enced in this s:ociety and that The book includes a wid·e to end its appearance is -a range of pieces on scurvy, "symbolic" -struggle closely p'el lagra, beriberL, diph- tied to the very transformation theria., smallpox, mal.ari-a, of America that disability yellow fever., 19th century activists -seek, he nevertheless French and ·Germa-n ~physician- ends with a cautionary n·ote: pathologists, and a se-ries on the point of view of 09 otis the the illnesses of American Frog-an.fl Otis is neither presidents. There is little interested in nor identified history of any chronic with the disabili'ty rights diseases here except a chapter movement., He sees himself as a on polio and Pre--sid1ent sh·owman: independent and Roosevelt and another on :F.DR' s proud., (Irving Kenneth -Zola) .hypertension& Bollet takes the rhetorical 1.-ine ·that D..Bollet, Alf~ed Jay. Roosevelt was "a symbol of Plagues and Poxes: The ..Rise ·and triumph over il.lness" but Fall of Epidemic Disease. New apparently sees no contrad.ic- York, NY: Demos Publications, ti.on when ·.he recounts the many 1987, 196 pp., $29.95. attempts made to keep Roose- Medical· historians have veltIs disability ,a secret. been divided -into two camps: Bollet .intends th:ese 11 lay" histor,ia,ns, who have essays to be thought~provoking w~itten social histories of without ·being _pedantic. He medicine linking medical writes a conservativ,e Great practice to other political, Man style o:.f history. Those id'eologi·cal, or cultural whose curiosity is piqued will traditions; and physician -want to ,explore his limited hi'sto·rians, who have tended bibliography -in more detail .. (with some nota,ble exception-s) (James Trostle, · Post-doctoral to treat medical history as·the Fellow, Sergievsk· Center, ·history of the medical profes- Faculty of :Medicine, Columbi.a s ion (Shortt, Bull Hist Med, University) 55: 533, 1981).. Bollet' s book
20 E. Bowe, Frank•. Changing the with genius the constant tug Rules, Silver Spring, MD: T.J. between:wanting to be accepted Publisher, Inc., 1986, 204 by others as · ."normal" and pp., $15.95. wanting to be more than just a· Changing the Rules speaks follower. He refers to Nazi more to the reasons behind why Germany, Lord .of the Flies, certain public policy rules had· and Howard Ro~rk as the to be changed than . it does to demonic images of team players the actual changing ·. of those gone wrong. He tells· of the rules. ·This is not a criti- thrill of· being a little cism, only an observation. · The .. league pitcher -- a good team life of Frank Bowe, as told in player. He. reports how his .his autobiographyi speaks as father encouraged him to be. much to how the extraordinary better than others in school life of an individual with and on the tennis court. And extraordinary intelligence and he describes his depression family support rose above the brought on by beating the odds barriers of his day to beat the in scholastic achievement to odds at playing the game the face bleak and even hostile hard way. In fact, , the employment opportunities. pressure to win at the other. It's a picture of typical guy's game seems to have forged childhood development, the nerves of steel. needed ·to teenager in crisis issues and set a new course. This perhaps problems magnified ·100 times is why his book is so impor- due to one's inability to hear tant. and, more importantly, the . Aren't· all great. revolu- inability of mai.nstream tionaries formed in the mold of America to create oppor- their times? The distinction tunities for people who are between the · leader of a . revo- .deaf and hard o.f hearing. . On lution and. a follower is that one level, one does not have the leader breaks the mold so to be deaf to see the picture that those of similar convic- clearly. It helped, I tion can follow through into suppose, for me . to .identify ·another world a world of closely with Frank's childhood opportunity made. wider. The and adolescence since we're .constitutioti of the United about the same age. I found states of America, after all, significance in the same was written. and signed by literature, news, and philoso- revolutionaries who spent most phy of that time as he did. of their lives playing by the Different from most rules of their day until they social .revo1utionaries in the took it upon themselves to past, Frank Bowe is still change those rules. Dr. Martin going strong. We should Luther King,. Jr. . had to wait expect, with pleasure, to hear for the government to catch up a great deal more from·him in to his thinking. Almost all of the future. (Moro .Fleming, his life was gone. before the Mass Rehab. Commission) rules changed for him. Gandhi was the ·same. . F. Bynum, W.F., Porter, Roy, Throughout his autobio- and Shepherd, Michael (Eds.). graphy Frank Bowe illustrates The Anatomy of Madness: Essays 21 ·in the History of Psychiatry, which persons suffering from Vol. II, Institutions and chronic mental illness were Society. . London and NY: treated in Victorian England Tavistock Publications, 1985, will be of most interest•. As 283 pp., $42.00. one might expect, the sweeping These wide.;..ranging essays gerieralizations that have· give the reader a detailed look remained in the popular at the practice ~f psychiatry consciousness are wrong~ in public and private institu- Bethlem Royal Hospital tions in 19th century England. (Bedlam) was not entirely the There are also essays on the snakepit it is made out to be. treatment of the mentally ill Desp.ite some abuse and ·periods in Sweden and the development of corrupt administration, of the profession of ~sychiatry patients did get well and were in Italy during the same ·period discharged. · Caretakers did, ·in · history. Two essays deal on occasion, show compassion with the interface of psybhia- and respect the humanity of try and .the• law, ·one by Joel their charge·s. Nor was "moral Eigen, an American sociologist, treatment,·" . pioneered by the who examines the issue of Quaker Samuel Tuke at the York criminal responsibility of. Retreat without coercive insane people in 18th century elements. Moral treatment England.. The second, by Ruth impacted mostly on the Harris, a Research Fellow: at "haves. " · The "have-notsII or Oxford, reviews a murder trial "pauper lunatics 11 ·as they were · that took place in Paris during then called, are still ~ith - the early 1890s, in whiqh the us. They are now called the question .of guilt or innocence "mentally ill homeless. II In hung on the issue of whether or Victorian England they .were not -a hypnotist could compel a the objects of the growing . · subject · to commit an · act she fear of social disorder and did · not wish to do. Harris chaos on the part of the law puts the trial in the context and order advocates who saw of the lively debate between them as a root cause of the Charcot's Paris schdol and problems, as well as humanita- .Berheirn's Nancy school of rian concern by people of hypnosis. The final essay conscience who saw them and reviews the major .shift· in their familie~ as_the. innocent · -British psychological medicine victims of the urbanization from the. prevailing preoccupa-· and industtialization of tion with the organic etiology society and wished to )rescue and hereditary ·degeneration of them. Both constituencies mentally ill people to an were partially satisfied by emphasis on psychodynamics, the . rapid rise of the county ··brought about by the dramatic asylums after the passage of _ success of· abreactive psycho- the Lunatic Asylums Act of therapy in the treatment of WWI 1845. victims of II shellshock"· which The institutional post-Vietnam is called "post- response to "the problem" of traumatic stress disorder." socially deviant and· economi- For the readers of DSQ, cally disadvantaged people who the·· essay exploring the ways in also have chronic mental
22 ·illnesses is very much al·ive in New medical technology is this country today as .a Janus-like. Machines that can reaction to the deinstitution- extend ·life can also extend it alization movement of the 1960s beyond any meaning or .sig- and. 70s. The ·overwhelming nificance. Technologies that impression that .this reviewer can ·rescue babiee who orice had while reading these · well- would h~ve certainly died are- researched and well-written also used to rescue those who · pieces was of the cyclical · certainly should have been nature of o~r approaches. to permitted to die. Diagnostic_ this population as we vacillate techniques . · that can. detect about . every 50 years between terrible genetic defects medicalization and demedicali- before a child is born can zation of mental illness ·and also reveal minor problems between institutionalization such as the presence of an and deinstitutionalization as .a extra Y chromosome or merely solution for those that suffer the gender of a fetus. Such from it. Perhaps the most information may lead some important leseJons of accurate parents to a·bort a pregnancy history· are .the humility of on highly dubious moral knowing that very few of our grounds.. . modern solutions are really new Colen' s book provides a and the futility of reinstitut- rich portrait of families and ing remedies that .have been. . patients struggling to cope tried ·before and have failed. with advanced medical tech- {Irwin H. Hassenfeld; M.D., nologies. The pregnant women . dlinical. Psychiatry, Albany he interviewed were grateful Medical College of Union for · the information that an University) ultrasound exam or amniocen- tesis had provided. But they F. · Colen~ : B. D. . Hard Choices. were. also burdened · with the New York, NY·: G. P. Putnam I s need · to make · decisions about Sons, 1986, 288 pp., $18.95. . continuing their pregnancies that an earlier generation of Levine, Howar.d. Life Choices. mothers did not have .to face. New Yo~ki· NY: Simon and Colen offers -few personal Schuster, 1986, 304 pp., opinions or words of . advice · $17.95. about these case studies. But In Hard Choices, B.D. in pursuing a few examples in· \ - Colen, science editor. of careful detail,· he manages to Newsday. focuses on making us flesh out the. ethical am- i aware of the moral muddles biguities inherent in many successful medical technology medical technologies in a has provoked. Colen shows how manner both accurate and the theme of technology as sensitive to the experience of ethically ambiguous ought to be doctors and patients. pursued in print. He exhibits In Life Choices, Howard a~ admirable facility for Levine is concerned with lis.tening to and observing helping the layperson work . those in· contact with medical · through some .of the moral · · technology--as either patients issues Colen identifies. But or health-care providers. his attempt to provid~ a cram 23 course in moral thinking does there has beeri enormous n~t prove very successful. progress in ethical thinking · Levine, a philosopher who was about medical technology that the director of the Nati6nal · has yielded many areas of Science Foundation'·s Public consensus. . Understanding of Science Only 30 ·years ago physi- Program, begins with a rather· cians argued that patients did desultory chapter on llbioethi- not want accurate information . cal. thinking. 11 He then take~ a about their diagnoses or wearying voyage through the therapy. And if it were more than so ca~es.intended to provided, it would only scare highlight ethical problems and . patients out of their wits. possible modes for analyzing since then Americans have made them. The problem with this it plain that they want approach is that many of the 1 physicians · to tell them .the cases are, indeed, dilemmas. truth no matter how dismal it The neophyte bioethicist is may be. They have made it . left with little more than a clear that paternalism and headache and a sinking feeling benevolence are not a ap- that the choices posed by propriate foundation for medical success are so dif- physician-patient interac- ficult that no definitive moral tions. Patients, health-care answers can ever be found. providers, and the legal What are we to say when commurtity have reached a confronted with the need to consensus that patiertt choose among potential kidney- autonomy must take precedence transplant recipients who over the benevolent goals of include a so-year-old physical the medical community when chemist with two young so.ns, a these two values conflict. recent graduate ·of journalism There are plenty of moral school, an adolescent··boy just topics related to medical entering high school, and a technology that are still the young mother on welfare who is subject of enormous debate. the sole support for her family What level of efficacy is of s children? While we might adequate for baptizing a new ban.dy about the conseqUences of technology as therapy? Who adhering to a particular moral should decide when to ter- theory in grapplirig with such a minate care when the patient problem, as tevine suggests, is incapable of doing so? the fact remains that no What kind of research, if any, obvious· answer can be found should be permitted on because such scenarios are not subjects incapable of giving the product of ignorant or their own· consent such as confused ethical thinking. · young children, demented They are grounded in real moral people, fetuses, or even dilemmas. animals? Such hard cases in Yet even these vexing bioethics create a deceptive questions have given rise to confusion. Not every moral .procedures that help ensure problem in medicine is a· that better rather than worse dilemma. Contrary to the ethical answers will be fotind. impression given by Levine, Institutional review boards,
24 . hospital ethics committees,. book moves from the . general ··. proxy consent mechanisms., state theory - of. coping and . adapta- .commissions on bioethics,and tion to· its applicati~n in ·· the _newly formed congressional families' f~ced with mental Bioethics Review Board ·are but illness in their midst. The a few 0£ the bureaucrati6 final part_ of the compilation constructs· that help society · deals with research training ·.cope with moral . problems in and modes of -family interven- -medicine.-· While .far. from tion. (Harold Silverman,· perfect, such. -procedural -College· of Education and· Human ·responses. ·do constitute · a . form· · Services, Wright State of· social consensus about how University) · to live -~ith. technological progress. (edited review · by G. Lane, Harlan. When the Arthur L. Caplan, Director of Mind ·Hears: A History of the the Center. for. Biomedical .Deaf. New Yqrk: - Random House,_ Ethics, Univ. of Minnesota: the 19B4, 60~ pp., $24.95. c6mplete· review appeared in This is a history of the Technology Review, Ndvem- European and · ·American deaf . ber/December 1987, pp. 72-73) communities from late 18th century to the end of the 19th G. · Hatfield, Agnes B. and centu~y: from -the rise of the · · ·Lefley, Harriet P. Families of dynamic deaf communities of the Mentally Ill. New York, NY: France and·. America ·to -the. The . Guilford Press, · 1987, 340 ._ imposition of "oralism" and pp., . $40. 00 hardcover, $19. 95 the denial of. most rights fo.r softcover. · · · the deaf at the end of that Ten authors and one writer time~ Un·like · most historical from the fields of psychiatry, work·. on deafness which con- _psychology, education, nu~sing centrates on decisions made by and rehabilitation. have col- the hearing for deaf popula- _laborated to write 15 chapters tions, .this history is about . on coping and adaptation. We the deaf themsel_ves .. As such, are_ turning more and · more to it represents an important_ ··community care as opposed- to· additiori _to the current institutionalization and the 1 i terature. . . authors realize that profes~ In order to introduce the- sionals need more information . reade~ into· the concern~ of ~nd knowledge about: the the deaf in the ~late 18th and ·families that they are working early 19th centuries, ·Lane with. The approach, therefore, resorts to a historical ruse, is from the. family point of writing largely through the view. The family with a eyes of the great F~anco- · ~entally ill member is in Ainericari deaf educator Clerc. crisis and they need ·-help_ in Th~ choice ~f Clerc is a navigat1ng through this painful brilliant one--if any single experience.. Historical and· individual could. be selected cross-cultural: items are dealt to repre$ent the~ best and with -first. ·society .has ill- brightest of ·the 19th century prepared families to nurture sign languc:tge movement, it. is their mentally ill members. Clerc. At the very center. of The second part of the both the Paris and Hartford 25 School$, his life forms a the deaf community,. this book logical bridge through time and will be an.important resource, across continents. Prominent to' be mined again and again figures, ·important historical _for the wealth of details that ·events and varying Schools of the author has so ably thought are presented in detail assembled in a readable and and the implications these have· coherent fashion.· (Nora Groce, for ' the subsequent history of Brqwn University) the deaf community· are clearly presented. Not only are high · H. Levine,I , Howard.( Life water marks of deaf· history Choices. New York, NY: ·simon reviewed, also included in and Schuste-r, 1986, 304 pp., fascinating detail is informa- $17.95. (See· F of .this tion on the personalities section) involved. I have never seen much of this information in I. Mahoney, c.w., Estes, print before--ce~tainly not in. C.L., and Heumann,. J.E. anything published since the (Eds.). Toward a Unified turn of the century. Making .Agenda: Proceedings of a historical characters ·speak is National .conferences on a technique some will like more Disability and Aging. San than others. ·Lane. goes to Francisco: Institute for· great. lengths to meticulously Health and Aging, 1986, 170 . document . all the . thoughts and pp. , $8. 80 •. words he attributes to Clerc. I read this when it was B~cause Lane puts much of this. hot off the press; and :I have personal information into the studied the report many. times mouth of Clerc, some of what he since then. It was a very writes may sound like gossip. · important· .conference. It But the reader should not be established, for the first fooled. What ·it represents is time, that there were connec- nothing- less than some of ~he tions between aging and best. historical detective work disabilities, and that academ- around.· ics and activists should pay Lane is to be commended :attention to the intersections strongly for pres·enting a of aging. and di~abilities. comprehensive history of the The Wingspread conference French, European and .American brought together the academic deaf ·movement that is. long Institute for Health and Aging overdue. This book will become at the Uni~ersity of Califor- a standard reference.for anyone nia, San Francisco~ and the interested in deaf history. activist World Institute on Literally hundreds of in- Disability in Berkeley. Judy dividuals, dozens of conferen~ Heumann and Carroll Estes ces, the establishment (and in should 'be .congratulated for some cases· .the demise) of making the conference happen educational facilities, in 1985 and bringing out the . methodolog_ies and philosophies report in 1986. DSQ readers are paraded before us. While are familiar with many of the it makes fascinating reading presenters, Irv Zola, . Gerben one time through, for those who DeJong, Alexandra Enders, Ed regularly work on history of Roberts, Heumann, Estes, and
26 others. NY: Tavistock Publications, But the conference and the .1986, 266 pp., $29.95 hard- report are also a failure. cover; $12.95 softcover. They didn't. ~eally set an The crisis in modern .agenda; the recommendations are medicine, accordingi to fragmented, and ·neither seems Navarro, is exemplary of a to ·1.ead anywhere. There is no wider crisis that charac- follow-up. The conference .terizes. other social institu- proceedings are not political; tions under capitalism· (e.g., they don't have a plan of the welfare state). The action. At. the same time, I, uncontrolled growth of the and I hope others, have learned medical sector and its so much from the proceedings; increasing ineffectiveness are and those who attended still not the result of professional talk about what a wonderful hegemony (one of his essays experience they had. criticizes Paul Starr·for this The conference was really assumption) or technological about .life-long physical and overspecialization, rationali- ,sensory disabilities. Develop- zation and bureaucratization mental Disabilities ~ere really (e.g., Illich) • . Contemporary not part of the conference. western medicine's crisis Although physically .disabled stems from the ·increased consumers were planners and demands from the working participants, there is no class, on ·the one hand, and indication that mentally "the needs created by the retarded persons. were invited; .·process of capital accumula- although there are some tion". (p. ·25) on the other. excellent statistics in the This book is a collection of appendices, •specially about various very articulate essays disability and poverty, poor .written over the years. The disabled people did not speak, first one explores the crisis and· I don't think they par- in modern medicine from a ticipated. · Marxist vantage point. The : • If you are interested in second (which seems a bit aging and disabilitie~, this tangential) deals with human report is essential reading. ~ights issues and health. The political agenda is yet to Others address the relation- come. ·(Tom Rose, Montgomery ship between work and health College and National Assoc. for· and offer .a critique of Senior Living Industries. Dr~ "bourgeoisII medical ideology. Rose organized a second There is a concluding essay on Wingspread Conference on Aging . "radicalism, Marxism and and Disabilities held in June Medicine." The essays on work 1987. The report of that and health and the critique on conference will be available in bourgeois medical ideology mid~summer 1988 from Jean Zink, most effectively -how the Center on Aging, Univ.· of strengths of a Marxist Marylan~~ College Park~ MD perspective as well as the 20742.) elements of a more holistic alternative that such a J. Navarro, Vicente. Crisis, perspective can of.fer. This Health and Medicine. New York, book has little discussion of· 27 sexism and health or chronic'· -..p,hies·,, ·a •ere · a;J;phctl;>•tic{:l:L·'.··:. illness and disability. This ·.. :lis:ti.ng ·only. :,wJj:et:,_":;; .ttt~.·,··., ..... · .. omission shows the _.weakness· ... of \-:_·.·.·:appet;it,ij: ~ng,·,,~l,:~'f~'i~:i:~.J'~?·.tA~t:J..~ft\t:(/)/··· Navarro I s perspective . in · discr.im1nation. .'q:r·••,'Where.> t9 :- ,- .. !~:r~if ~{i{::~ti:. :!m ·. +(if!t!1~1ii11~r1,11i1ii1:( ·?: ; ·the· rationalization of the body reader would have .· any : .cog-· and medical technology develop nizance,. including many in, .and are permeat',ed b,y·,: ·. a-· · pppl.:q.. ._ : ~c).g~-~i~;~,t,.:'> :'Ul9-,·'..Js.. capitalist context/ · the · es.pijcially: \·good ·:··otr>,••unpup7 cultural ethos .of the body as l ished" ; sourc·es ' ;such,- 'as: machine, as socially ·isolated -doctora·1- ·:disser·t·a,tions'~· and oppressive organizational Pro·b.ab·~Y -reflecting · their features of ·medicine appear .in ·reliance·_ on·· already· existing "existing" socialist countries. and commercially available _Though . Navarro addresses such data ba*3es, the. publication problems, he does not convince . has relatiyel..y 1.,.few foreign me that these merely emanate refe,;ences~,>, '.t'he··~ .c~tatto:ns..:. from incomplete socialist_ themse,lve~ '. al;!e .quite oo!lt~m~ development. His orthodox ._porary . with 93%_ : being past. Marxism, while offering 1960 and a. f1.1:J.l.->"4l%. from- :th~ important insights into medical yet t'o' 'b~ ' 'ebhcluded ·.· 19,80 •.eh ' care and .the "social produc- (Irving Kenneth Zola). tion" of health and illness, also limits him. (Peter Freund, L. Rosenberg, Charles E. The Montclair State College) care of strangers: The Rise of America's Hospital.-System. New K. Patrias, Karen, Young, York, NY: ~asic Boe>ks, 1_987, . Rhee, Scannell, Kristine, and x, 437 pp., ·+ plates, $22 95 • van de Kamp, Jacqueline. Images The history .of. -the of the Health Professional in American ·hospital was once the ·Popular Arts. Specialized portrayed as the story of a Bibliography Series, . SB.S No. backward institution radically 1987-3, National Library- of · changed through medical and Medicine, Public Services scientific advance. - Recently Division, Bethesda, MD 20894. this has been augmented by· 15 pp., n.p. .histo~ies that ~mphasize the In preparing this biblio- · role ; of communities, econom- graphy of 411 selected situa- ics, politics,· wc;,rkers, and tions, the authors used the patients in the development of following guidelines: an the institution. The Care of article or book had to actually Strangers. continues in this discuss or· otherwise portray- veiri~' the concept of the h•alth Rosenberg. begina by professionals' image \and riot examining the internal order just imply it and thus tJ:ie ... . and administration of the omission of novels and motion·' · antebE;lliuln h.ospJtal. Pre~Civi:L' · pictures. The broad definition _war ·hospital:s .:. often addressed-. of the concept of art included :issues that. were only tarigen- advertisements and commercials. · · tially relate.d to health ·and As with all such bibliogra- illness, serving the "worthy"
28 poor or those who became. .financial base redirected dependent upon the l•rger trustee and administrative community for a variety of interests. By the early ·reasons, ·including indigence, 1920s; · the fundamental .old. age, abandonment, and relationships between trus- unemployment. Illness was tees, physicians, medical necessary for admission, but it schools, nurses, workers, and was not sufficient. pati•nts that characterize Trustees ·who saw them- present-day hospitals had selves as guardians of the largely been established and ·community ·controlled the the basic medical orientation hospitals tightly and showed of the institution . had· been younger house staff little more .worked out. The hospital -respect than they might_ any increasingly turned inward, other hired hands. Doctors who seeking its legitimation from sought closely guarded hospital its own medical and in-patient privileges often saw the concerns. Rosenberg sees the institution as a training tangential role that the giotind and a stepping-stone hospital out-patient and. toward a profitable private social service departments practice. Nurses, often drawn play today as stemming from from the patient population or this movement away from more · from lower-class.groups, found traditional social functions. their aspirations circumscribed By the early 20th century, the by the-ideology that associated· paternalistic awareness of the nursing with femininity and patient and his or her place service. Indigent patients in the larger community became were treated with a combination a peripheral motivation at -of condescension, contempt, and best• concern by· trustees, physi- . Rosenberg's book is a cians, or others who· visited powerful and elegant discus- them at home before admission sion of the origins of modern ·to evaluate their· m-dical hospital . practice. He finds condition and moral environ- meaning in hospital annual ment. reports, newspapers, trustee · Rosenberg's critical point minute books, diaries~ medical is that the hospital was a and administration journals,· reflection of the society that and doctors' daybooks that dreated it. Its medical care, might ea·sily be missed by a nursing, administration, and less skilled historian. He even architecture reflected the sees the hospital as a micro- moral ~nderpinnings of the cosm of the changing beliefs, ·larger community• values, and ideals, of American .The Civil War, with its society and· through the _va~t expansion of the hospital hospital provides us with a · experience to · patients from a clearer picture of our own wide variety of social classes, attitudes toward medicine, proved central. in reshaping poverty, and dependence. ·American attitudes;· the (edit.ed review by Dav'id introduction of the germ theory Rosner, History,· Baruch reshaped medical - thinking; the College and Graduate School; development of a paying-patient CUNY; the complete review
29 appeared in_ Science, Vol •. 239 i entitlem~nt -to redress (p. January 1, 1988,· pp.· 79-80) · 156)." The struggle over. the definition of this disabling M. Smith, ·Barbara Ellen. · condition was part of a Digging our own Graves: Coal broader strug·gle over ~lass-. Miners and the Struggle over based oppression manifest on · . _· Black Lung Disease. Philadel- the mine~s' bodi•s. -· This phia, PA: Temple University problematic ·sit~atiort--the Press,. 1987, 240 pp.,· $24. 95. continuing $Ocial creation of This is an important book bodies marked with injustice ·for students ct. disability, and the medially~mediated both in the_ story it ~ells and political struggle over the problem it.poses. A strike understanding, processing, and by over 40,000 West Virginia redressing their disabilities- coal miners helped lead the -applies to many disabling passage of a federal black lung conditions, although not compensation law in 1969. always in the clear class Smith tells the story -of the terms involving coal miners. changes in the social relations Failure to analyze law as a in the coal mines that produced co-definer and processor with widespread respiratory illness, medicine of oppressed. bodies conflict within the United Mine unfortunately narrows her Workers of America, the fight inquiry. Smith's perceptive for compensation, continuing attempt to characterize the· struggle after · passage of the - political battle over the initial law, and the growth and social definition of a disa- decline of the black lung bling illness makes this must movement. This-dramatic story reading for anyone interested of one of the earliest, perhaps in that issue. (Anthony Bale, the most militant, and certain- Public Health, Yale Univ.) ly one of . the most successful modern movements of disabled N. Stigler, Stephen M. The people is told by a sociolo- History of Statistics: The gist~participant (not· par- Measurement of Uncertainty ticipant-observer) who focuses before 1900. Cambridge, MA: on a central problem of concern Harvard University Press, to many · movements of disabled 1986, 426 pp., $25.00. people: · political struggle Stigle~'s · History of between medicine and those with Statistics is an engrossing ·disabling conditions. over what and highly accessible int~l- the condition is and how it is lectual history that- charts to be understood. the emergence of the "logic of In contrast to a narrow the measurement of uncertain~ medical understanding of their ty" as the methodological respiratory problems as coal nexus of modern science, miners' pneumoconiosis, a natural and social. The plot disease known by its appearance turns around two 19th century · on an X-ray, coal miners' pu~zles, one mathematical, the understood black lung as a other methodological. Why did "complex and unifying meaning-- a century pass between the as physical disease, as social discovery of least squares and exploitation, as affirmation of its elaboration as linear 30 regression? And why was there emergence of. empirical social a· parallel lapse in the science. Yet the etymological · appropriation of statistical kin.ship· · with •"state," re- · reasoning by social scientists? f l.ected . in the early . use· of The answer is that ·the two· the .term 11,StatistiCS II to refer peculiar· problems of social to matters ot governance, science--the complexity' of suggests the importance of the causal :proce~ses and the expansion and -complexity of inability to arrange experimen- political functions in tal ·.controls. · with -which to attracting scholarly in- patcel them-~animatea a terests. Coupled with· this, conceptual reframing of the ·the new class of "knowledge mathema tical questions fo-r workers" found_in positivism a which least .squares was twice ready ideology for its the answer, once in_ 1805 and challenge to the old, irra- then again in 1900. It was tional order. The irony is only when the problem moved that a book lauding the from astronomical and geodesic contribution of social science measurement accuracy to that of to statistical methods ignores statistical controls (as an the problem of the social experimental surrogate) that construction of mathematical the implications. of Legendre's knowledge. pioneering work were fully Nevertheless; the greater realized. Social science .evil is undoubtedl°y a reduc- · emerges from the story not as tionist interpretation of the _the poor relation of "hard history of science as a· linear ·science" but as the locus of function of social and politi- mathematical breakthroughs, cal forces and interests. Stigler hyperbolizes., on the Stigler's intellectual history order .of those . of Newton and unfolds with its -own rhythms Darwin. Contrary to the and reluctant knottiness, and conventional view by which as such, provides a compelling statistical re~soning took root: appreciation of th~ central in the natural sciences and place of social science in the then .colonized (for better or development of modern methods worse) the social, Stigler for "the measurement of argues that the latter fun- uncertafnty." (Michael W. damentally transformed statis- Macy, Sociology, Brandeis tical reasoning, issuing a. University) different and more powerful 20th century tool, the general o. Szasz_, Thomas. Insanity: linear model. The Idea and Its Consequences. A mathematician by. trade New York, NY: Wiley, 1987, 414 and training, Stigler implicit-_ pp • , $17 • 9 5 • _ ly assumes· that knowledge In his new book Insanity: unfolds in relative autonomy The Idea and Its Consequences, from social circumstances, Dr. Tnomas szasz continues constrained primarily by the. (and, to a degree, updates) internal logic interlinking a his critique of the concept of ~eries. of intellectual knots. · mental illness, psychiatric Thus the author detours a practice, · involuntary commit- sociologic~~ analysi~ of· the ment, and the insanity
31 defense. Szasz 's thesis is a Considering.the scope.and familiar one to those ·who have import . of recent developments followed his writings during in psychiatry and mental the past 30 years: disease must health policy (i.e., bio1lcigi- evidence demonstrable physical cal and diagnostic advances, lesions, thus "mental illness" deinstitutionaiization, the cannot exist. Nevertheless, patients' rights movement, .·the metaphor has been reified, · etc.), I was hoping that Szasz with 'disastrous· societal would more thoughtfully c6nsequences for free will, incorporate these events into individual liberty and personal his analysis than he does. responsibility. Mental illness Szasz spends.much of the boo.k, is, Szasz content~, a useful in· my view·, unfairly. castigat- pseudo-scientific "explanation" ing the views of ·his opponents fox socially problemati~ (nearly everyone else writing deviant, disruptive, distaste- on mental health issues), ful, and/or evil behavior~-an rather than carefully ex- explanation often justifying· plicating his own views and the involuntary "treatment" of their conseguences for. the those coming under its sway py "mentally ill," their fami- psychiatric agents of the lies, and the society at state. large. Despite its shortcom- The book is divided into ings , however, analysts of 4, frequently overlappingi mental illness. will find sections. In Part li szasz Insanity thought-provoking. details basic distinctions· (Paul R. Benson, Sociology, between mental illness, Tulane Univer·sity) physical disease, and the social role of the patient. P. Walker,· · Martha Lentz. Part 2 outlines definitions of Beyond Bureaucracy. Lanham, mental illness (as brain MD: University Press of disease, irrationality, America, 1985, 313 pp., $14.95 irresponsibility, c~ime and softcover. . deviance, etc.) and traces This is a· biography o.f their historical development. Mary Switzer· who, ·until her Special atteniion in this retirement in 1970, had more section. -is given to a critique influence than any other of biomedica.l psychiatry and person on the evolution of involuntary mental hospitaliza- U.S. public policy about tion (2· areas szasz views as disability. It is also a ·closely related) • · In Part 3, remarkable chronicle of public Szasz examines.the relationship service starting· .in the of mental illness to metaphdr, Harding administration in 1922 imitation, intentionality, and and continuing successfully ~esponsibility. In P.art 4, the through those of Coolidge, final and most interesting Hoover~ .Roosevelt, Truman, section of the book, Szasz Eisenhower, Kennedy, Johnson, discusses the "practical· uses 11 and into that of Nixon. It (social functions) of the gives the reader a view, mental illness metaphor: as through the experience of one strategy, justification,. legal of the most honored women in fiction, and explanation. · the history of the U.S.
32 government, of· .that. ··govern- vision · of a better life for ment's efforts to . ·cope -:with al_l people. (Norman Acton, SR disadvantage and depepdency. B(?X l0B., ca;-dinal' VA) Mary Switzer's :influence_ on disability policy developed during. her many. : years of 1988 BOOK AWARDS . . service in the Federal Security chosen by The President's Agency. Her- definitive- and Committee on Employment of the dramatic impact on both policy. · HandicaJ?ped .. · and program began in 1950 when she became Director of what was A. Wehman,.·· Paul, Moon, then the Office of Vocational Sherril M~, Everson, Jane M., Rehabilitation. During the next. Wood, Wendy, and .Barcus·, J. 20 __year.s she . presided over a Michael. Transition. from substantial expansion of the School to Work: New Challenges. activities and influence.of the for Youth with. Severe· Dis-. OVR and the introduction of abilities. Baltimore, MD: programs to stimulate personnel .Brookes Publishing, .1_987, ·336 training, facility construc- pp . , $ 2 3, • 9 5 • tion, research, and otherwise Critical stages of, the to generate the nationwide proces.s, from curricula infrastructure that exists .plan~ing, initi~ting transi~ _today. , tion programs, evaluating Her final government employment options and assignment was as Administrator successful placement · of . youth of the Social and Rehabil- with severe disabilitie·s are itation Service of the Depart- ·examined. ment of Health,- Education and Welfare. Working under· HEW B. Mc Loughlin, Caven, Secretary John. Gardner, Mary Garner, · J. ~radley, : and and her associates had de- Callahan, Michael. Getting veloped the idea of applying Employed, Staying Employed: the concepts of rehabilitation Job - Development · and . Training to the n~tion's welfare for Persons with Severe problems. SRS was the in-. Handicaps. Baltimore, MD: strumentality to orchestrate Brookes Publishing, 1987, 210 this novel experiment. -It was, pp . , $ 2 2 • 9 5 • many think, well underway when Detailed suggestions- for Mary -Switzer was forced to guidance through job develop- retire, and inspiration bogged ment,. training and - placement down in the politics of the for individuals with severe Nixon era. disabilities are offered. This -book gives some information .about ·Mary's c. McCray, Paul M. The Job ·personal life, but it is Accommod~tion Handbook. essentially about her 48 years Verndale,·. MN: RPM Press, Inc. , ·as a public servant, about the 1987,192 pp., n.p. people with whom . she worked, .. Reasonable· accommodation, about how the bureaucr_acy and employer attitudes, job the Congress can be made to analysis, site reconstruction, serve the interests of,.· the tools and techniques, etc. are .·people, and about. one ·person's suggested.
33 younger individuals·. Although D. Goldman,. Charies D•. one can argue about the Disability. Rights Guide] definition of mino~ity group Practical Solutions to Problems status as it applie~ to Affecting People with.. Dis- disabled people, it seems to .abilities.· Lincoln, NE: Media me that the conclusion that Publishing; 19a7, 161 · pp., this identity is of recent $14.95. origin or that it is more Federal and state laws re widely accepted by younger architectural barriers, disabled persons is fal~e~ As housing, . education . a-nd trans- · historian Paul Lorigmore ·portation are examined and recently'wrote (SEE Longmore•s contacts for further legal reference, p. 4), the ais- information cited...· ability community is rich in. historical materials. I would E. International Center for add that .the hietQricai · the Disabled.· The ICD Survey of a minority consci9usness II: - Employing Disabled Ameri- among dis;abled groups, in the cans, A Nationwide Survey . of U. s. at least,. extends· well ·920 Employers. New York, NY: into the mid-19th century. Louis Harris and As~ociates and What has been missing .has been ICD, 1987, $17.50 (includes the· dissemination of this postage and handling). historical information by and ·This follow-up study of The ICD. among disabled persons • .·. Survey· of Disabled Americans Disabled communities have samples employment~related fought long and hard to secure opinions by- employers on the their collective rights and qualities of· employees with the younger generation needs disabilities. Job. performance,. to understand past historical accommodation. costs, hiring struggles in order to function policies and . general employer and survive as informed insights about workers with citizens. disabilities are featured. ·· Let me share my personal experience on this-topic. As a child. of profoundly -deaf CLASSIC EXPERIENCES REVISITED: parents who used sign lan- ·2 Essays· guage,· I ·grew up in the. deaf community but was abysmally Disability-- ignorant of its historical An Ahistorical Community? roots. It was not until many · years later that I decided to by Johns. Schuchman apply my skills as a historian (~istory, G~llaudet Univ.) to deafness· and.. deaf people. In particular, I wanted to tap Recently, several.· writers the experience and memory of ·on disability · have observed deaf senior citizens who had t~at on~ of the most sig~ lived through the transition niticant findings of the .1986 from silent films to talking · Harris Poll_ of Disabled motion. pictures, as well as. _Americans was the growing the ·succeeding years .of the . "minority group" identity among Great Depression. To do this, -· disabled .· persons, particularly ·I· developed videotaped oral
34 history interviews. In the designated historical elders, course of these interviews and it is, not surprising that supplementary archival re- commentators have concluded search, I learned about deaf that the Harris Poll finding actors who performed in silent of "minority group"· identity motion pictures, deaf patriots is of recent origin. who raised funds for the war · To remedy this inter- efforts both in World War I and generational vgap I would II,: a deaf pilot who flew suggest that the disability across the American continent communities and organizations without the beriefit of radio encourage and support efforts communication, and a deaf to preserve and disseminate newspaperman who led the fight their respective heritages to oust an 11 oralist 111 residen- through systematic oral tial school superintendent-- history programs. In addition not so mention ordinary deaf to biographies of prominent citizens who coped with and disabled individuals and survived with dignity the institutional and political unprecedented economic travails histories of special education of the 1930s. and rehabilitation networks, Although recent publica- we need to understand and tions by Jack. Gannon, Nora share the experiences of Groce, and Harlan Lane have ordinary disabled men and substantially increased the women. availability of historical I do not believe that my information about the deaf research experience with older community, I have given some deaf senior citizens is thought to the comparative unique. Other elderly paucity of disability heritage. disabled citizens represent a For lack of a better defini- rich repository of history tion, the disability community lessons for current and future suffers from. an ahistorical activists in the disability characteristic. Unlike all communitiese Notwithstanding other minority groups, there is the findings of the Harris no easy mechanism for the Poll, it is my view that transmission and preservation informad interviews with of the historical memory of senior disabled citizens will disabled. people. . Normally, make it clear that past disabled persons are the only generations perceived them- disabled individual in their selves to be members of a family of birth. Ofteri, family minority group. Further, we members and teachers have never need to understand past met or interacted with disabled definitions of disability and adults; and with few excep- "minority group" from disabled tions, little formal attention. p~ople themselves in order to is given to the heritage of better understand the histori- disabled persons in the school cal obstacles to cooperation curriculum. In fact, many between disabled groups. disabled adults themselves The modern oral history prefer not to identify or movement is of comparatively associate with other disabled recent origin (post-World War persons. Given the absence of II) and has been an important
35 element in the .efforts of citizens. Our passion ran minority ·groups throughout the.· high · and _I remember -assuring .- u. s ·. to ·achieve dignity · and · Judy Heumann that if· we equality. Despite...the ahis- planned to sit-in, I would be torical. characteristic des- ·there as long as anyone. · The cribed earli$r, disability others agreed. We would plan communities would do well to to stay .ourselves and· .suggest institute similar programs of. to others· that they come · hi~torical research. · prepared for such an event but not make a point of confronta- tion. We were not yet sure The "504 Demonstrationslt others would care to follow of 1977 our example. We were fortunate to have by Mary Jane Owen (Director, an accessible transportation Disability Focus, Washington system. The Bay Area Rapid _DC; the following is an edited Transit (BART) officials were version of her essay that notified - that they might appeared in - Rehabilitation expect an increase in usage by Gazette, 28:1, 1987, pp. 8-9) wheelchair users. E~ery . . possible source of support was Ten years ago, from April briefed: news releases and 5 to May 1, 1977, there was a background. information were series of events in which distributed broadly. City, people with a range .of dis- state, and federal political abilities acted out their figures were asked to join dreams for acceptance within with representatives of every their environments. The ·"504 possible minority group and Demonstrations" for regulations disability classification· to to guide federal protection of speak at a rally. Permission civil rights of America's for a good · sound system · was "handicapped" citizens ·were applied for and a bull horn played out against a background was borrowed. The agenda was that ·tended. to. ignore their set and rough guidelines for importance. ent~ring the building were laid out (We marveled -- over a . The bone-chilling cold of leaked memorandum from HEW the vast. expan~e of the officials recommending that converted car dealership forced· the. handicapped visitors be us to . huddle· around a small greeted with courtesy.. There electric· heater. We had come, was a -- flavor of serving tea after hoµrs, to plan - a West and cookies to the children Coast response to the Washing- before sending them safely ton, DC-based American Coali- home)'. tion of Citizens with Dis- - Most - of the planners abilities (ACCD) request that already had friends or col- we plan · some sort of rally or leagues within the local ·event.to focus attention on the political and media- systemsQ. sl6wness of the Carter ad- As a former professor· at San ministration's campaign promise Francisco State University•i to move to formalize· the civil Master -of Social Work Depart- rlghts protections· for disabled ment; I had a supervisory role
36 with a number of graduate .offering each of the . players students who had been placed .in one wish. Some wished for a local, state, and fed$ral favorite food, others for offices and had connections success in our goal of having with both Mayor George Moscone 11 504" regulations signed. Th,e and Congressman Phillip Burton. last to present her wish was We .needed every · resource Cathy, a young woman who used and connection. After sleeping crutches. "If I'd been asked the first night on the hard before to make a wish, it floors, mattresses were would have been not to be a delivered _from the supplies of ·cripple anymore. I just t;:he State Health Department. wanted to be beautiful. But Food arrived from MacDonald's, now I know I'm beautiful, just .Delacy House's drug programs, as I am." I can never the Black Panthers,· and remember that evening without Safeway. The Mayor himself the passion rising up into my scolded the federal officials throat and, swallow as I may, for ignoring the needs of the the lump remains. She was a ·uninvited guests and brought in hero. shower attachments to be used There were so many-- in the tiled restrooms. Steve, who lay,· day after day Phillip Burton arrived and night upon. night, taping from Washington at a critical events around him on a point. The guard at the door recorder. because he knew what was refusing to allow the was happening was important ent·rance · of· members of the enough to risk his health; · Black Panthers who were Jeff, who brought his guitar bringing in food. As a and proved to be a master Congressman, he used his cheerleader with chants on the authority to stress that we bull horn--he wrote new words must be allowed to eat, but. we for old civil rights songs had already anticipated a food with which we loudly greeted shortage. Our peers in federal employees in the Washington had been forced to morning; the members of the cut short their sit-in after a Butterfly Brigade,· a gay brief stay because . they were street patrol that loaned us allowedno food. their walkie talkies when the Some of us decided to call officials turned off our a hunger strike to confirm to telephones; the deaf woman who ourselves and others our entered the building to teach • c·ommitinent to stay at any cost• a class in sign language and We who chose that form of stayed; the woman with mental commitment were amazed at how retardation who always much time the others had to injected a note of realism spend with food: its preserva- into our too-abstract delibe- tion, preparation, and clean rations late at night when we up. · We were free to spend talked of possible arrest or those hours in discus-sion, forceable removal. strategizing, writing, etc. · We were all heroes and Once, ·we played the game all suffered variously from of "Godmother,'.' with the person the stress and strains of the designated as the Godmother confrontation and testing of t· ' ' 37 our strengths. But no one who the l0tp International Con- · participated left that building ference on the Social Sciences . the same as they entered. We and Medicine to proviqe a built a community of concern. network for interchanging I ~ntered the building an ideas, research,. information intellectual bigot and left and publications on health and after knowing the, positive human rights issues from a valQe of mental variety. social science and medicine · Today, histories of the perspective. Contact:. Jesus civil rights of disabled people M. deMigQel, Dr., Ph.D., are being written without the Catedratico del Sociologia, l:>enefit of the experiences of Facultad de Ecpnomicas de la hundreds of pepple who went Universidad de Barcelona, through those days gaining a Avenida de la Dicignonal 690, sense of power. The gre>wth of 08034 Bercelona, Spain. the minority mindset of the disability movement was c. Physicians for a National .fostered by · these events and Program m~mbers play a key s~crifices. People placed role in the public debate on their lives and health· on the national health policy. It line and believ.ed.the potential supports the adoption of a · gains were worth the risks. universal, comprehensive and That time must be remem- publicly funded health care bered. The stories. must be program for the U.S. Contact: told. The passion must be PNHP, Dept. of Medicine, passed on. Cambridge Hospital, 1493 Cambridge St., Cambridge, MA 02139; 611/655-9919.
RESOURCES D. The International Society for Research on Civilization A. · LIKAS (Care for the Health . Diseases and Environment of People) maintains a Research (SIRMCE) emphas'izes an in- and Documentation section that tegrated approach between the produces paper.s on health. and scientific communities, health . h~alth-related subjects and professionals, and health conducts mini-action resear- authorities and disseminates ches. Since 1982, the or- information of the SIRMCE ganization has been implement- working parties--i.e., ~ng community-based health ·ecetoxicology, cardiovascular programs . in 2 3 communities in diseases, hypertension, the provinde ·Of Sorsogon, cancer, occupational disease, Philippines. Contact: Dorothy .and mental health. Its B. · Navarro, RND Research and . journal is distributed fr~e of Documentation Officer, LIKAS, charge to members and in- center for Community Services, dividuals interested in its Ateneo De Manila University, aims. Contact: SIRMCE Loyola Heights, Quezon City, Secretary~General, Mrs. F. Philippines. ~endrickx 61, rue ED Bouilliot, Bte 11 B-1060, B. An informal group was Brussels, Belgium. For established before the close of journal: Editor, Dr. Guy 38 Magnus, community Hea1th children with· disabilities, services,. Waterloostraat 2, ·· B- and other groups .in dis- 2600 Antwerpen·, Belgium. ability. For more information, contact: Zbigniew Bankowski·, E. -The goal ·of Physicians for M.D., Executive Secretary, ijuman Rights, a non-profit CIOMS, c/o World H•a1th riational organization, is to Organization, 1211 Geneva 27, ~ring the.:skills of the Switzerland. (excerpted from ·A,merican medic·a1 profession to Rehabilitation. International the protection of international · · . News_letter) h.uman rights-. . Its produces a -newsletter-. Record. Contact: G. · University Microfilms . _Physicia11s. · for . Human Rights, International has a new free · · 408 - Highland :"Ave., Somerville, catalog on diss•rtation MA ·02144 •· . · research in sociology and social work, with a special F. The Council of Interna- section on social issues. It .tional Organizations·of Medical contains 2348 dissertations ·Sciences (CIOMS) tries to bring and masters theses published together the scientific, between 1984 and 1987 which medical and ethical protessions are available on paper or in to discuss ·the social ramifica- microform. Contact: University tions of new medical tech- Microfilms Intrernational, nologies. .In 1984 it began catalogs Dept. (Box 87), 300 holding international dialogues· N. · Zeeb Rd .• , Ann Arbor, MI on ''Health ·Policy, Ethics and 48106; 1-800/521-0600; Human Values." In 1988 it will 313/761-4700. discuss· "E.thics and Huma-n - Values ~n _· Family . Planning," H. The American Hospital -including·· the various ·. uses of Association has published a . prenatal· diagnosis at its new 269-page Directory .of Bangkok, Thailand meetings and National Self-Help/Mutual Aid wi11· hold -a symposium· on Resources. It contains key "Ethics and Human· Values" facts about more than 500 within .the 5th International national organizations (title, bonferen6e of Islamic Medicine address, phone no., no. of -in Cairo in November. The 1987 chapters, primary purpose, meetings .in.: the Netherlands services provided) with an focused on · the European · and easy-to-use ·code for quick North·American experience. Ms. · reference to which kinds of tol~n Koester~Dreese of .the services a given organization Dutch c~undil of the Han- provides, mutual aid, educa- .d'icapped reported that although- tion, advocacy, fund-raising, ~ost of the participants telephone information/support, concentrated on medical or visitation programs, social research advances, ·· some were . act'ivities, newsletter, and oon~_erned with how such information materials. Cost: . s_e*1sitive .issues · as prevention $2·0 (AH.A members) or $25_ of handicapping conditions were (nonmembers) plus $2.25 .being publicly - discussed with handling. - Contact: l-800/AHA- ···the participation.· of people 262-6; AHA Services, Inc., with ·a~sabilfties, parents of · Ord·er Processing Dept., 4444 39 w. Ferdinand, Chicago, IL Jancar, stoke Park Hospital, 60624 .. Stapleton, Bristol BS16 lQU, England. Topics included the I. The first issue of "Dykes, psychological, psychiatric, 91 Disability and Stuff, Vol g 1, social, medical/dental and Issue 1, Summer 1988, is free; pharmacological aspects of regular subscriptions are aging. · available from: Catherine Lohr, PO Box 6194, Boston, MA 02114, L. Vol. 1 of Elders with for $8-$20+/year (U.S. funds, Developmental Disabilities: A sliding scale system) ; Braille Working Bibliography by Dr. and tape copies of premier Dennis c .. Harper and col- issue available through Women's leagues is concerned with the Braille Press, POB 8745, dually diagnosed aging person Minneapolis, MN 55408; 612/872- with emphasis on caretaker 4352. Focus: upcoming legisla- awareness and perceptions of tion, networking among women the aging-based changes and with similar health concerns, the needs of the elderly names/addresses of places population with emotional/be-- within the "movement" that are · havioral problems. Contact: accessible and what that means, ·Dr. Harper, Div. of Develop- a look at how some women find mental Disabilities, Dept_.u of ways to get their special needs Pediatrics, Univ. Hospital met. To begin regular publica- School, Univ. of Iowa, Iowa . tion, . DD&S needs at least 50 City, IA 52242. subscribers. Ma The Washington Volunteer J. The National Rehabilita- Readers for the Blind, Inc. tion Information Center (NARIC) have begun taping the National has available a review of key Rehabilitation Newsletter, issues in aging and developmen- starting with the January 1988 .tal disabilities: Contemporary issue, as a service for people Issues in the Aging of Persons with visual impairments. To with Mental Retardation· and receive a tape of the NRA Other Developmental Disabili- Newsletter, contact: Judy tie~ by Ors. Matthew P. Harris, 703/836-0850. Janicki, Marsha M. Seltzer, and Marty Krauss. It is accompanied N. The Inventory of Long- by an extensive annotated Term Care Places (ILTCP), a bibliography and comprehensive public use data file, is reference list. Contact: Mso available from the 1987 Freddie Karp, NARIC, 4407 National Medical Expenditure Eighth St.~ NE, Washington, DC Survey (NMES), the largest, 20017 or 202/635-5826. most detailed survey on how Americans use and pay for K. A booklet of presentation health care and how much that abstracts on the 1st Frenchay , care costs. The Inventory is Health Authority Annual an inclusive listing of symposium, "Aging in the nursing and personal care Mentally Handicapped: A homes and facilities for Multidisciplinary Approach" is people with mental retardation available from: Dr. Joseph in the u.s. and constitutes
40 the unedited sampling frame for 20005. NMES' Institutional Population Component, which is collecting P. For a nominal charge The the _ Nation's first - comprehen- Working Papers on Aging and sive data on the health care Mental Retardation (1987 AAMR utilization and costs of the Conference plenary session on institutionalized populationo aging papers) - are available ( ·other NMES data collection from Dr. Marty Krauss, Heller activities are focusing on the School, Brand~is. University, noninstitutionalized civilian ·waltham, MA 02254-9110. population and on special high- risk subpopulations. Q. The Journal of Policy The ILTCP data consists of History. to be published 56,728 facility-level records quarterly beginning in January and includes facility iden- 1989, will provide a forum for tifiers~ facility and patient/- recent research by scholars in resident characteristics, and several disciplines on the administrative and field origins and development of fbllow-up data. The data are public policy in the U. s. as available on tape in Statisti- well as comparative historical cal Analysis System (SAS) or approaches to the development Extended Binary Coded Decimal of public policies in other Interchange Code (EBCDIC) nations. Of special interest formats. The SAS tapes and in the first issue: "Health documentation can·be purchased Policy in Historical Perspec- from the National Technical tiven by Theodore. Marmar and Information Service (Spring- Richard Smithey. Subscription: field, VA 22161; 703/487-4650). $28/year (U.S~); $32/yr The EBCDIC data tape and (fo~eign/U.S. dollars) documentation may be ordered as Contact: Prof. Donald T. a set, PBSS-122353/AS, with the Critchlow - or Professor Peri documentatiort available Arnold, Journal of Policy separately as PBSS-122361/AS. History, Univ. of Notre Dame, T_he SAS data tape and documen- Notre Dame, IN 46556. tation may be ordered as a set, PB88-122379/AS with the documentation available END NOTE separately as PB88-122387/AS. NOTE: When Ed Berkowitz read o. The Gerontological Society that DSQ would- be focusing on of America is developing a historical aspects, he was resource directory of members "inspired to sit down and interested in sharing their write this essay... " which knowledge and expertise with follows. others. It will maintain a ciomputerized registry by Historical Aspects· selected areas of aging. of Disability ~ontact: Nancy Ee Carl, Information Specialist, by Edward Berkowitz, History, Gerontological Society of George Washington University America, 1411 - K Street, NW, Suite 300, Washington, DC What role should his- 41 torians play in disability disabled "mentality," a unique stu~ies? 'I'his special issue consciousness among people in,vites a·. response. with dis~bilities. · rn - doihg hi~torical Often those who write on re~earch, p~actitioners of disability experience ·elevate 'di s·_ab i 11ty studies w il 1 individual anecdotes to 'discover ~ontroversies that representative expeiiences; .have come. to preoccupy the In doing so, they face another ·history. profE!ssio.n. ·For historical pitfall, which openers, there is the .. matter of . -might be called the "heroism" what might b~ called the problem.- Even if we can find ·"direction of. inquiry. it Should creative adaptations or it · be from .the bottom up, as extraordinary resilience among social historians would prefer, some members of the disabled or· from the ·top down, as community, we must be careful · political historians would about making generalizations .favor? In _ the case- of dis- concerning the community ability, the question might be. itself. At its broadest . ' phrased ,,as 'a choice between points, for exampl~, the trying to analyze the "disabled literature on American slavery .expe~ience" over time or paints slaves as victims and ~tte~pt~ng to explain the victors, as people · who were origins and development of the oppressed and as people who bureaucr~tic. and professional managed to rise above·oppres- . worlds i-n which disabled· people sion. such a view suggests find.themselves .. that slaves were somehow If . one opts · to chronicle better people than others in the common experiences of southern society. Similar disabled people, there is the inferences could be made about problem of locating appropriate people with disabilities; that sources. -The reason that elite somehow as oppressed people, groups receive so much histori- they have emerged as better cal - attention . is that . the people, as morally superior Jilembers ·of. these groups leave people. Such counterintuitive so much evidence behind. As claims need to be evaluated they ·write letters, serve on very carefully, for they put committees,. and pass legisla- the historian in the role of tion, they create a paper trial mythmaker who creates a past · that . enables . the historian to from present political follow their p·ath. More humble desires. folk blend- into the.statistical If one concentrates on woodwork ·and often need to be external ·influences over the ·analyzed· by means of fragmen- experience of disabled people, ~ary records. Social hi~- such as government programs . t6rians describe them in and professional practices, .aggregate t(arms, such as the. other problems arise. Here, literac:y rate or the unemploy..;. . too, the evidence problem is merit rate,· rather than · in not trivial, particularly if·: indivitual _terms.· Such one wants to delve into such _aggregate analysis does not prog~ams as vocational help to -uncove~ what cultural rehibilitation or social histori~ns' might call a security. From personal
42 experience, I know the dif- employing a cross-national ficulties of penet~ating those approach that permits · us to programs. Most. of the relevant see what features of the documents remain with govern- . disabled experience are strong ment agencies who are reluctant enough to cut across cultural to part with them,·· particularly barriers. And,· clearly, we if they sense that something need to know more ·about the unflattering is about to 'be· bureaucratic and· professional written. Much of the documen-· worlds in which disabled I tation has simply been lost or :people find themselves (here ': ,J put in a huge warehouse and my own work might offer a filed away ·forever. useful start). This approach ~lso In the final analysis, I suggests another issue. If cannot answer my question someone wants to write about about the role of historians how the government has treated in disability studies, except disabled people, who should gently 'to suggest that they this person be? Since the deserve one, even though the theme at hand concerns third- work will not be without its party treatment of an affected share of intellectual quan- group, one wonders if an daries. "outsider" has the appropriate .insights and outlook the handle· the assignment~ The very choice of investigator might bias the investigation. . As my career has implied, I do not think one needs to be black. to sing ihe blues~ History, by its very nature, is a sympathetic act of the imagination. Nor do I believe that one needs to depend exclusively on the social history, bottom up, or the political history, top down, approach. It does seem to me, however, the disabled community needs to· be more sensitive to :t+istory-.:...more disabled people, more practitioners of dis- ability studies should become involved in historical studies ~.nd · more thought should be given to ·the creation of archives that· can hold docu- ·ments related ·to grass-roots political activity. Further, the question of a disabled ".mentality" could be profitably inv~·stigated, perhaps by
43 REMINDERS
1. SUBSCRIPTION: If you have not yet sent in your subscription for 1988, please do so (Notices for renewal for 1989 will be coming out with the Fall 1988 issue). Payment for U.S. in- dividuals is $10; for U.S. students $5; for U.S. organizations $20; · for Canada $15 (UeS. funds); for international AO Airmail rate $25 (U. s. funds) or international surface rate $15 (U.S. furids). Thanks very much. You·r check should be made out to Brandeis university/DSQ and sent to us .. If you need an invoice, 1 please let us know. 1 'i
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3. SOMETHING TO THINK ABOUT: The _issue of language--calling a group "the handicapped" or "the deaf," for instance, as opposed to "people with disabilities" or "my uncle who is blind"--is a controversial one. While we respect our readers' choices, we try . to avoid naming people by their illnesses/disabilities in DSQ. If, as a contributor, you feel particularly strongly either way, please indicate this to us when you submit your material. Otherwise, the editorial hand will make appropriate substitu- tions.
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BRANDEIS UNIVERSITY NON-PROFIT ORG. Department of sociology U. S. POST AGE PO Box 9110 PA I D Waltham, MA 02254-9110 Permit No. 15731 USA Boston, Massachusetts DISABILITY STUDIES QUARTERLY Irving Kenneth Zola, Editor
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