DOCUMENT RESUME

ED 422 708 EC 306 688

AUTHOR Harris, Perri; Lewin, Lori TITLE Information Package on Disability Studies. INSTITUTION Syracuse Univ., NY. Center on Human Policy. SPONS AGENCY National Inst. on Disability and Rehabilitation Research (ED/OSERS), Washington, DC. PUB DATE 1998-08-00 NOTE 109p. CONTRACT H133D50037 AVAILABLE FROM Center on Human Policy, Syracuse University, 805 Crouse Avenue, Syracuse, NY 13244-2280. PUB TYPE Reference Materials General (130)-- Reference Materials - Bibliographies (131) EDRS PRICE MF01/PC05 Plus Postage. DESCRIPTORS *Disabilities; Disadvantaged; *Economic Factors; Feminism; Films; Individual Differences; Organizations (Groups); Periodicals; Personal Narratives; *Political Influences; Program Descriptions; Resource Materials; Scholarly Journals; *Social Control; *Social Influences; Social Status; Textbooks

ABSTRACT This document is a resource guide to disabilities studies, an approach to disability which seeks to examine the social, economic, and political forces that for years have served to marginalize and oppress people with disabilities. Following an introduction that explains the field of disability studies, Section 1 is an annotated bibliography of 13 disability studies texts and a list of 14 additional recent publications. Section 2 is an annotated bibliography of 12 feminist disability studies and Section 3 describes 11 autobiographies and personal narratives. The following section describes eight movies and documentaries related to disability studies. A list of 24 more mainstream films is also included in this section. Section 5 offers fairly detailed descriptions of classes, programs, or concentrations in disabilities studies held at eight institutions. Data include contact information, program emphasis, and program requirements. The next three sections describe seven journals and magazines, nine organizations, and six Internet resources concerned with disability studies. Attached are the following article reprints: "Disability Studies and Mental Retardation" by Steve Taylor; "Disability Studies: Introduction" (Lennard J. Davis and Simi Linton); "Disability Studies: Expanding the Parameters of Diversity" (Simi Linton and others); "(Dis)Abling Images" (Terry Collins and others); "Integrating Disability Studies into the Existing Curriculum: The Example of 'Women and Literature' at Howard University" (Rosemarie Garland Thomson); "Silence Is Not without Voice: Including Deaf Culture within Multicultural Curricula" (H. Dirksen, L. Bauman and Jennifer Drake); "A Review of Deaf Studies Curricula"(H. Dirksen and L. Bauman); and "A Review of Harlan Lane's The Mask of Benevolence': Disabling the Deaf Community" (Lennard J. Davis). (Contains approximately 350 references.) (DB) 00

C1 CNI INFORMATION PACKAGE ON DISABILITY STUDIES

PREPARED BY PERRI HARRIS AND LORI LEWIN

U.S. DEPARTMENT OF EDUCATION Office of Educational Research and Improvement EDUC IONAL RESOURCES INFORMATION August 1998 CENTER tERIC) his document has been reproduced as reCerved from the person or organization originating d. 0 Minor changes have been made to improve Center on Human Policy reproduction quality.

Syracuse University Points of view or opinions stated in this docu- ment do not necessarily represent official 805 South Crouse Avenue OERI posdion or pohcy. Syracuse, NY 13244-2280

This information package was prepared with support from the U.S. Department of Education, Office of Special Education and Rehabilitative Services, National Institute on Disability and Rehabilitation Research (NIDRR), awarded to the Center on Human Policy, Division of Special Education and Rehabilitation, School of Education, Syracuse University under Cooperative Agreement No. H133D50037. The opinions expressed herein are those solely of the authors and do not necessarily reflect the position or the policy of the U.S. Department of Education and no official endorsement should be inferred.

2 70.1*,4 ABLE OF CONThNTSI

Introduction 1

Disability Studies Texts 4

:Feminist Disability Studies 13

Autobiographies/Personal Narratives 20

Movies and Documentaries 26

Academic Programs 32

Journals and Magazines 42

Organizations 48

Internet Resources 53

Reprints 55

3 NTRODUCTION

Over the past several decades, what we now refer to as "disability studies" has been a powerful influence on policy and practice in regards to people with disabilities. Disability studies has evolved as a means of addressing how people with disabilities have been treated historically and how they continue to be treated. Once seen through a medical model as people who are sick and in need of a cure, through a sociological model where people with disabilities are labelled and stigmatized by others, or through a psychological model where their experiences have been individualized and pathologized, people with disabilities are now being seen through different perspectives. Although medical and psychological models are still present, they are being resisted by a relatively new field called disability studies, its philosophy being that disability is a social construction. While disability studies does not deny that there are differences, either physical or mental, between people, they argue that "the nature and significance of these differences depend on how we view and interpret them" (Bogdan and Taylor, 1994). Therefore, rather than seeking to "fix" a person or to separate him or her from the rest of society, a disability studies perspective would seek to problemitize society rather than the individual. The solution therefore lies not in the person, but rather in breaking down the barriers that limit people with disabilities from full participation in their communities and in society in general.

Disability studies seek to examine the social, economic, and political forces that for years have served to marginalize and oppress people with disabilities. The field has emerged over the last several years, drawing on theories and perspectives from sociology, social science, women's studies, cultural studies, and education. It often focuses on the idea that people with disabilities are a minority group who has been discriminated against. In this sense, the study of disability is similar to the study of race, class, and gender inequalities. In addition, disability studies provide the intellectual and methodological tools needed to create disability research and policy. The theories and philosophies of disability studies can then be applied to real issues in the law, in community inclusion, and in public policy.

The field of disability studies continues to grow and change. Recent additions to the field such as feminist disability studies and cultural studies have challenged "traditional" disability studies, and have forced the field to be more inclusive of different perspectives and positions in society. Moreover, disability studies most often focuseson issues around people with physical, rather than cognitive disabilities. One major challenge for the future of disability studies is the inclusion of the experiences of people with cognitive disabilities and how they shape this emerging field.

This package provides current information about the field of disability studies. In order to address this next challenge to disability studies, we have annotatedvery recent books (and just a few journal articles) about disability studies. Theyare divided into the following sections: disability studies texts, feminist disability studies, personal narratives/autobiographies, and movies and documentaries. Next, we have includeda number of academic programs around the country which offer coursework and degrees in disability studies, as well as a list of journals and magazines and membership societies all pertaining to disability studies. Following this is a small section on Internetresources on disability studies. At the end, we have included an article by Steve Taylor from Disability

Studies Quarterly regarding the construct of mental retardation and disability studies. Also included in this reprint is a selected annotated bibliography that includes information on a number of books that address the same issue. The last section is a reprint of several articles from Radical Teacher, which recently devoted a large section of its publication to the field of disability studies.

Reference

Bogdan, R., & Taylor, S. J. (1994). The social meaning of mental retardation: Two life stories. New York: Teachers College Press.

3 6 isability Studies Texts;

The following section is comprised of books that could be used as "text books" for a disability studies course. Most of them are edited books that cover a variety of topics such as disability rights, identity politics, cultural studies and disability, social perspectives on disability, and perspectives of people with disabilities. Also included are a number of fictional pieces and poetry. It is worthy of note that the majority of this material is written from the perspective of or includes the perspective of only those with physical disabilities. Unfortunately, over the past several years, "texts" such as these which include developmental disability and disability studies have not been published. For a disability studies perspective (from less recent texts) which incorporates developmental disabilities, see the annotations by Steve Taylor and Perri Harris which are located at the end of this information packet.

TITLE: Nothing about us without us: Disability oppression and empowerment

AUTHOR: Charlton, J. I.

PUBLICATION INFORMATION: 1998

University of California Press 2120 Berkeley Way Berkeley, CA 94720 FAX 510-643-7127 http:/ /www-ucpress.berkeley.edu/

The author uses a disability rights standpoint to discuss the international oppression of people with disabilities. He provides a theoretical framework for understanding disability oppression not as something that has come from the attitudes of people without disabilities, but because of systems and structures of oppression from which these attitudes stem. He uses interviews with disability rights activists from around the world to back his argument.

TITLE: Speechless: Facilitating communication for people without voices

AUTHOR: Crossley, R.

PUBLICATION INFORMATION: 1997

4 Dutton Penguin USA 375 Hudson Street New York, NY 10014 http://www.penguin.com

Rosemary Crossley has been a pioneer of and outspoken advocate for facilitated communication since the 1970s. Her latest book, Speechless: Facilitating communication for people without voices, is an in-depth look at the experiences of 18 individualswho use facilitated communication. She describes the frustrations and complexitiesthey face in their attempt to make themselves understood by others in their environment. She also explains the process of using facilitated communication, answeringmany of the questions raised about FC and demystifying many of the aspects of it that have troubled others.

TITLE: The disability studies reader

AUTHOR: Davis, L. J. (Ed.).

PUBLICATION INFORMATION: 1997

Routledge 29 West 35th Street New York, NY 10001 212-216-7800 FAX 212-564-7854 http:/ /www.thomson.com/routledge

This edited reader is a collection of classic andnew essays, as well as fiction and poetry, in the field of disability studies. This perspective places disability ina political, social, and cultural context that theorizes the construction of disability in this society. The authors address such areas as feminist theories of disability, the construction of deafness, and disability as metaphor. The book is divided intoseven sections, including historical perspectives, politics of disability, stigma and illness, gender and disability, disability and education, disability and culture, and fiction and poetry. This is progressive reading, but it should be of note that it is traditional in the sense that disability studies translatesto "physical disability studies" and there is little mention of developmental disability.

8

5 TITLE: Staring back: The disability experience from the inside out

AUTHOR: Fries, K. (Ed.).

PUBLICATION INFORMATION: 1997

Plume Penguin Putnam Inc. 375 Hudson Street New York, NY 10014 http: / /www .penguin.com

This book, edited by Kenny Fries, explores the experience of disability through writings by contributors who have disabilities. The collection includes nonfiction, poetry, fiction, and drama by such authors as Nancy Mairs, John Hockenbeny, Anne Finger, Adrienne Rich, Mark O'Brien, and Marilyn Hacker. Each chapter explores disability notas something that limits one's life, but as an experience all its own. Fries considers the theme of this edited book as one of human connection, "connection with the past, connection with one another, connection with our bodies, connection with ourselves."

TITLE: The disabled God: Toward a liberation theology of disability

AUTHOR: Eiesland, N.

PUBLICATION INFORMATION: 1997

Abingdon Press 201 Eighth Ave. South P. 0. Box 801 Nashville, TN 37202-0801 1-800-251-3320

Through this book, Eiesland, who became disabled as a child when she had polio, helps the reader to see how the "hidden history" of conventional bodies living ordinary lives with grace and dignity, disgust and illusion, can make for both a theological and pastoral contribution. Arguing for a liberation theology, she calls on us to move away from our defining of people with disabilities as people who need to adjust to a minority group that is subject to social stigmatization. While her examples tend to be basedon the experiences of people with physical disabilities, what she has to say also is insightful for those working to include people with developmental disabilities in faith communities.

6 TITLE: Disability and culture

AUTHORS:Ingstad, B., & Whyte, S. R. (Eds.).

PUBLICATION INFORMATION: 1995

University of California Press 2120 Berkeley Way Berkeley, CA 94720 FAX 510-643-7127 http:/ /www-ucpress.berkeley.edu/

This edited book takes a global look at disability. Each chapter reflects understandings of disability from different cultures. Its anthropological focus examines the relationship between disability and culture, explaining disability in terms of social processes from a multicultural perspective. Contributing authors, who have done research in places such as Borneo, Kenya, Uganda, Nicaragua, as well as Europe and North America, explore the meanings of different types of disabilities to different cultures, and seek to understand the assumptions about humanity and personhood derived from their understandings of disability.

TITLE: Claiming disability: Knowledge and identity

AUTHOR: Linton, S.

PUBLICATION INFORMATION: 1998

New York University Press 70 Washington Square South New York, NY 10012-1091 1-800-996-6987 FAX212-995-3833 E-Mail: [email protected] http://www.nyupress.nyu.edu

In this new book, Simi Linton studies disability in relation to identity. She argues that disability studies must understand the meanings people make of variations in human behavior, appearance, and functioning, not simply acknowledge that these variations "exist." Linton explores the divisions society constructs between those labeled disabled and - those who are not. She avoids a medicalized discussion of disability and promotes the notion that people with disabilities need to claiin their identities as disabled and as contributing members to the understanding of disability as a socio-political experience.

7 1 0 TITLE: Disability studies/Not disability studies

AUTHOR: Linton, S.

PUBLICATION INFORMATION: 1998

Disability & Society, 13(4), 525-540.

In this article, Simi Linton seeks to define the boundaries between what should be considered disability studies and what should not. For reasons that she outlines, she proposes that curriculum and research that emphasize intervention should be viewed as separate from disabilities studies, which is a socio-political-cultural examination of disability. Linton advocates a liberal arts-based model similar to that which frames women's studies and African-American studies.

TITLE: End results and starting points: Expanding the field of disability studies

AUTHORS: Makas, E., & Schlesinger, L. (Eds).

PUBLICATION INFORMATION: 1996

Society for Disability Studies c/o Robert Scotch School of Social Science University of Texas Box 830688, Mail Station GR3.1 Richardson, TX 75083-0688 http://www.wipd.com/sds/

This edited book is comprised of chapters from extended abstracts of some of the presentations given at the Society for Disability Studies in Rockville Maryland in 1994. The authors discuss numerous topics relating to disability studies, although the focus is almost exdusively physical disabilities. The book is divided into sections, including: Disabling and Nondisabling Images of Disability, Family Reactions to Disability, Cultural Differences in Response to Disability, Acknowledging Challenges to Self Determination, A Progress Report on the ADA, Increasing Access to Services, Designing Relevant Research, Expanding Approaches to Disability, Contact and Communication as Vehicles for Change, Self Definition and Self Support, and The Power of Community as an Agent of Social Change.

8 TITLE: The body and physical difference: Discourseson disability

AUTHORS:Mitchell, D. T., & Snyder, S. L. (Eds.)

PUBLICATION INFORMATION: 1997

The University of Michigan Press 839 Greene Street, P.O. Box 1104 Ann Arbor, Michigan 48106-1104 E-Mail: [email protected] http://www.press.umich.edu/

This edited book by Mitchell and Snyder seeks to introduce disabilitystudies to the humanities by exploring how writers have used physical and cognitive disabilitiesin literature. The chapters explore how disability isseen in our culture in relation to "aberrance" and "normalcy," and explores the meanings of health, theconstruction of the body, citizenship, and morality in relation to disability. The authorspresent a variety of literary perspectives in two parts. Part I is "Representations in History,"and chapters include such topics as "Constructions of Physical Disability in the AncientGreek World: The Community Concept" by Martha Edwards; "Defining the Defective: Eugenics, Aesthetics, and Mass Culture in Early Twentieth-Century America" byMartin S. Pernick; and "Conspicuous Contribution and American Cultural Dilemmas: TelethonRituals of Cleansing and ReneWal" by Paul K. Longmore. Part II is "A History of Representations," and includes chapters such as "Feminotopias: The Pleasures of 'Deformity'in Mid- Eighteenth-Century England" by Felicity A. Nussbaum; "The 'Talking Cure' (Again): Gossip and the Paralyzed Patriarchy" by Jan Gordon; and Disabled Womenas Powerful Women in Petry, Morrison, and Lorde: Revising Black Female Subjectivity" byRosemarie Garland Thomson.

TITLE: Perspectives on disability (Second Edition)

AUTHOR: Nagler, M. (Ed.).

PUBLICATION INFORMATION: 1993

Health Markets Research 851 Moana Court Palo Alto, CA 94306

In this second edition edited by Mark Nagler, he once again explores themeaning of disability in our society. Using an interdisciplinary perspective, he offers articlesby sociologists, psychologists, therapists, and others to explore theways in which disability is constructed and understood. The book includes a foreword by Evan Kemp Jr. andan

9 12 introduction by Nagler. He divides the book into the following sections: "What itmeans to be disabled," "Society and disability," "The family and disability," "Sexuality and disability," "Medical and psychological issues and disability," "Education, employment, social planning and disability," and "Legal and ethical issues and disability." The selections for this second edition are good, but there are not many articles relating to people with developmental disabilities. This is the one main weakness of this text.

TITLE: The ABC-CLIO companion to the disability rights movement

AUTHOR: Pelka, F.

PUBLICATION INFORMATION: 1997

ABC-CLIO, INC 130 Cremona Drive, P.O. Box 1911 Santa Barbara, CA 93116-1911 http:/ /www.abc-clio.corn/

This text is a general introduction to the disability rights movement and the people and court cases that support or challenge it. It includes entries on such peopleas Ed Roberts and Judy Heumann. The book is organized as a dictionary, and has references from every aspect of the disability rights movement, from court cases to famous people, to historical events and disability culture. It also includes a chronology, beginning with the founding of the American School for the Deaf in 1817 and concluding in 1996.

TITLE: Teaching sociology of disabilities

AUTHORS:Schlesinger, L., & Taub, D. (Eds.).

PUBLICATION INFORMATION: 1998

American Sociological Association (ASA) Teaching Resources 1722 N Street, N.W. Washington, DC 20036 http:/ /www.asanet.org

Teaching sociology of disabilities is a collection of syllabi and histructional materials on disability issues. It can be purchased by ASA members for $17.00 and by non-ASA members for $21.00. A copy can be downloaded from the ASA web site atno charge.

10 mazon.corn1

This is a list of books we foundon the web site Amazon.com, which is probably the most well known on-line bookstore. Their address iswww.amazon.com. We found these books either under the heading "Disability Studies"or "Sociology of Disability," and have listed books that have recently been publishedor are to be published within the next year. We have not read these books, and therefore cannot attest to thecontent. We are basing this list only on titles.

Disability Studies: A Reader Stuart Carruthers, Jim Sandu/Paperback/To be published in 1999

The Disability Reader: Social Science Perspective Tom Shakespeare (Editor)/Hardcover and Softcover/To be published in June 1998

Sexuality and People with Intellectual Disability Lydia Fegan, et al/Hardcover/Published 1997

Gender and Disability: Women's Experiences in the Middle East Lina Abu-Habib/Paperback/Published 1997

Struggles for Inclusive Education: An Ethnographic Study (Disability. Human Rights and Society Anastasia D. Vlachou/Paperback/Published 1997

Disability and Society: Emerging Issues and Insights (Longman Sociology Series) Len Barton (Editor)/Paperback/Published 1996.

Beyond Disability: Towards an Enabling Society (Open University Set 10_01.) Gerald Hales (Editor)/Hardcover/Published 1996

The Sexual Politics of Disability: Untold Desires Tom Shakespeare, et al/Hardcover/Published 1996

In Search of Freedom: How Persons with Disabilities Have Been Disenfranchised from the Mainstream of American Society Willie V. Bryan/Paperback/Published 1996

Understanding Disability: From Theory to Practice Michael Oliver/Paperback/Published 1996

11 14 Bad-Mouthing: The Language of Special Needs Jenny Corbett/Hardcover/Paperback/Published 1995

Disabling Laws. Enabling Acts: Disability Rights in Britain and America (Law and Social Theory) Caroline Gooding/Hardcover/Published 1995

Enforcing Normalcy: Disability, Deafness, and the Body Lennard J. Davis/Paperback/Published 1995

The Eye of the Beholder: Deformity and Disability in the Graeco-Roman World Robert Garland/Hardcover/Published 1995 eminist Disability Studies

The books and articles selected for this section representa recently recognized branch of disability studies: feminist disability studies. This fieldmay have begun with British women such as Jenny Corbett and Jenny Morris, who takea feminist stance that the personal is political, and explore their lives aswomen with disabilities through this political lens. More recently, feminist scholarship in the United States has begun to explore disability studies within feminism. Scholars such as Rosemarie Garland Thomson call for feminist to recognize disability as a category of otherness, suchas race, class, gender, and sexual orientation, and to locate feminist disability studies in the broaderarea of identity politics. The selections here represent just some of the voices and perspectives in this relatively new and rapidly growing field. Many of theseare also included in the information package, Women with Disabilities: Issues. Resources, Connections, Revised.

TITLE: Redrawing the boundaries of feminist disability studies

AUTHOR: Garland Thomson, R.

PUBLICATION INFORMATION: 1994

FemiMst Disability Studies, 20(3), 583-597.

In this review essay, Rosemarie Garland Thomsonargues for the recognition of feminist disability studies within feminism. She states that feminist critical analysis does not usually recognize disability as a category of otherness (as it does withrace, class, and gender) unless the study specifically states this focus. Although helpful, she would liketo see a shift away from women's autobiographical accounts of their own experiences with disability, which often promote the "disaster/terror/pity scenario of disability", toan articulation of feminist disability studies as a "major critical subgenre within feminism." She asserts that feminist disability studies can be located in the broaderarea of identity politics if discourses of the body marked as deviant are included. To illustrate her argument, Thomson draws on four feminist works. The first three, Invalid women: Figuring feminine illness In American fiction and culture, 1840-1940 by 'Diane Price Herndl, Monstrous imagination by Marie-Helene Huet, and Tattoo,torture, 'mutilations and adornment Me denaturalization of the bodyin cultural text edited by -Frances E. Mascia-Lees and Patricia Sharpe, do not deal with "disability" specifically, ,instead, Thomson interprets these works in a feminist disability studies perspective. She uses the fourth book, Barbara Hillyer's Feminism and disability because it specifically addresses the issue of disability and feminism, and because it embodies the feminist principle that the personal is political. Thomson hopes that these four books introduce perspective into the emerging field of femithst disability studies.

1 6 TITLE: Feminism and disability

AUTHOR: Hillyer, B.

PUBLICATION INFORMATION: 1993

University of Oklahoma Press 1005 Asp Avenue Norman, OK 73019-0445 http://www.ou.edu/oupress/

Written out of a need in the feminist movement to include women with disabilities and a need in the disability rights movement to address the unique experiences of women, Feminism and disability combines the personal, political, and intellectual aspects of feminist theory and disability theory. Hi Ryer discusses such issues as body awareness, community, nature and technology, and the ways in which cultural standards of language, independence, and even mother-blaming are constructed. She also challenges political movements which stress productivity and normalization in order to include more types of people and more aspects of the human condition.

" TITLE: What'happened to you? Writings by disabled women.

AUTHOR: Keith, L. (Ed.).

PUBLICATION INFORMATION: 1996

The New Press 450 West 41 Street New York, NY 10036 http:/ /www.wwnorton.com/newpress/welcome.htm

Lois Keith compiled collections of fiction, essays, and poetry by disabled women in her new book, What happened to you? Her goal is to give women with disabilities a space to express their views on such topics as abuse, equality, sexuality, prejudice, and legislation dealing with disability issues. These narratives construct disability as a cultural and political issue, not only as a personal one.

14 17 TITLE: Mustn't grumble: Writings by disabled women

AUTHOR: Keith, L. (Ed.).

PUBLICATION INFORMATION: 1994

The Women's Press 34 Great Sutton Street London EC1 VODX ENGLAND E-mail: [email protected] http://www.the-womens-press.com/

This edited book, compiled by a woman witha disability, presents writings by other women who have a range of physical disabilities. The short stories and poems included in this book range in topic from issues of accessibility to abuse to equality. Disabilityis framed by these narratives as a social, cultural, and political issue, not onlyas a personal one. This is an excellent account of disability issues froma woman's perspective. It is powerful, .§ moving, and educating for all readers.

TITLE: Does she boil eggs? Towards a feininist model of disability

AUTHOR: Lloyd, M.

PUBLICATION INFORMATION: 1992

Disability, Handicap & Society, 7(3), 207-221.

The author examines disability from the perspective ofwomen with disabilities. She focuses on the social model of disability rather thana medical model and asserts that disability is another form of oppression experienced bywomen. She argues that disabled women have been exduded from both the women's movement, which is oriented toward non-disabled women, and from the disability rights movement, which is orientedtoward disabled men. Using the history of black feminism, the authorargues for a refraining of the _analysis in which to explore the simultaneous experiences of gender anddisability.

15 18 TITLE: Women and disability

AUTHOR: Lonsdale, S.

PUBLICATION INFORMATION: 1990

St. Martin's Press 175 Fifth Avenue New York, NY 10010 13, http://www.stmartins.com/

Lonsdale explores how women with physical disabilities experience the double discrimination of being both a woman and a person with a disability in society. Placing physical disability in a social and political context rather thanan individual one, she uncovers how women with disabilities have been rendered invisible, how they see their self image and body image, how physical disability often leads to dependence, and howwomen experience a loss of civil liberties and how they face discrimination. Lonsdale also considers the ways in which these situations can change for women, specifically, how policy practices can change so women can achieve greater independence. Chapters include subjects such as the social context of disability, invisible women, self-image and sexuality, employment, financial consequences of disability, discrimination, and independence.

TITLE: Feminism and disability

;,AUTHOR: Morris, J.

PUBLICATION INFORMATION: 1993

Feminist Review, 43, 57-70.

The author discusses the absence of women with disabilities from feininist scholarship and feMinist theory. Morris claims that a significant failure of feminism is that it fails to incorporate disabled women into its politics, theory, research, and methodology. She argues that feminist theory would benefit from the inclusion of theconcerns and experiences of disabled women, and that feminist theory and feminist methodology have major contributions to make to the disability research. The author discusses heranger and frustration with feminism in two ways: first, that disability is generally invisible from feminism's mainstream agenda, and second, that when disability isa subject of research by feminists, the researchers objectify disabled people so that the research is alienated from their experiences rather than attempting to understand the experiences of disabledwomen.

16 19 TITLE: Personal and political: A feminist perspectiveon researching physical disability

.AUTHOR: Morris, J.

PUBLICATION INFORMATION: 1992

Disability, Handicap & Society, 7(2), 157-166.

Morris asserts that feminist theory and methodology have largely ignoredand alienated women with disabilities and the research conducted by disabledpeople. She argues the feminist theory needs to take up the challenge of applying their principles to the study of disability and to examine the lives of disabledwomen. In turn, Morris feels that disabled women and disability research in general has muchto learn from feminist methodology; mainly the principle of making the personal political. In addition,Morris outlines the role she sees for nondisabled researchers interested in researchingdisability- related issues. She views the role of the non disabled researcheras an ally, and calls on non disabled as well as disabled researchers to continue to study theways in which the non '* disabled societyoppresses its members with disabilities. Lastly, she argues that disability research is of great importance in the general understanding of the perpetuationof inequalities in society.

TITLE: Pride against prejudice

AUTHOR: Morris, J.

PUBLICATION INFORMATION: 1991

New Society Publishers P.O. Box 189 1680 Peterson Rd. Gabriola Island, BC VOR 1X0 CANADA E-Mail: [email protected] http: / / www .newsociety.com/

Morris, a disabled feminist and activist, providesa feminist analysis to the study of the experiences of women with disabilities. Basing her argumentson the feminist principle that the personal is political, Morris eloquently challenges such issuesas prejudice, abortion, and the notion that people with disabilities lead lives thatare not worth living. She further discusses the history of people with disabilities in institutions andunder the Nazi regime. Morris also examines the meaning of disability in Western cultureand the meanings of history of segregation, dependence, andan emerging independence of people

17 2 0 with disabilities. Pride against prejudice is a commentary on political activism and rights, and stresses the need to fight back against the prejudice, stereotypes, and oppression ofan abelist culture.

TITLE: The lives of women with mental retardation: A multiple minority perspective

AUTHOR: Olson, D. L.

PUBLICATION INFORMATION: 1991

Unpublished doctoral dissertation Syracuse University Syracuse, NY 13244

This dissertation by Deborah Olson explores the lives of women labeled mentally retarded. She argues that this label, along with their gender, has placed thesewomen in the disadvantageous position of being in a multiple minority group. Through in-depth interviews with five women labeled mentally retarded, Olson seeks to understand how they see themselves as women with mental retardation and how they interact with people who have impact on their lives. The major finding from this work is thatwomen with a label of mental retardatiorrare more prepared to handle disability discrimination than gender discrimination, and that the women's movement has not provided them with theawareness of choices it has provided for other women who do not have cognitive disabilities.

TITLE: Toward a feminist theory of disability

AUTHOR: Wendell, S.

PUBLICATION INFORMATION: 1997

In L. J. Davis (Ed.)., The disability studies reader (pp. 260-278). New York: Rout ledge.

Rout ledge 29 West 35th Street New York, NY 10001 212-216-7800 FAX 212-564-7854 http://www.thomson.com/routledge

18 The author argues that disability is nota "biological given," rather it is a social construction of biological reality (like gender) and because of this, the factthat 16% of women have disabilities, and that feminist thinkers have raised the most radical issues concerning cultural attitudes to the body,a feminist theory of disability is needed. Wendell argues that those with disabilities are constructed as "the other" and because of thisare seen as failing to control their bodies (control of our bodies is demanded by society) andas symbolizing the threat of pain, limitation, dependency, and death.She calls for people with disabilities and their knowledge and experience with their bodiesto be fully integrated into society, and concludes that in this way bodies would be liberated.

TITLE: The rejected body: Feminist philosophical reflectionson disability

AUTHOR: Wendell, S.

PUBLICATION INFORMATION: 1996

Rout ledge 29 West 35th Street New York, NY 10001 212-216-7800 FAX 212-564-7854 http: / /www.thomson.com/routledge

In The rejected body, Susan Wendell, awoman with Chronic Fatigue Syndrome, draws parallels between her own experiences with illness to feminist theoryand disability studies. She argues (as many others have), that feminist theory has neglectedto incorporate the perspectives and experiences of women with disabilities, and that theseperspectives must be included in future discussions of feminist ethics, the body, and the socialcritique of the medical model. Wendell also examines how cultural attitudes aboutthe body contribute to disability oppression and society's unwillingnessto accept different types of bodies.

22 19 utobiographies/Personal Narratives

This section highlights some of the current autobiographies and personal narratives of people with disabilities. This is just a sampling, since the previous annotated bibliographies in this packet have presented a much more detailed list.

TITLE: Life as we know it: A father, family, and an exceptional child

AUTHOR: Berube, M.

PUBLICATION INFORMATION: 1996

Vintage Books Random House, Inc. Customer Service, Dept. #05001 Random House Distribution Center 400 Hahn Road Westminster, MD 21157 E-Mail: [email protected] http://www.randomhouse.com/

This remarkable book is a father's story of the life of his 4-year-oldson James, who _has Down syndrome. It is far more than just a personal memoir of his son's birth and young life. In following the developmental stages, social experiences, and involvement with social services that James passes through, Bérubé explores their social implications, including such topics as IQ testing, the politics of education, disability law, social services, health care, and entitlements. Implicit in these discussions are not just hisown family's experiences in these realms, but also concepts such as social justice, what itmeans to be human, and what kind of society is valued and by what means we determine this value.

.TITLE: Body, remember

AUTHOR: Fries, K.

PUBLICATION INFORMATION: 1997

Plume Penguin Putnam Inc. 375 Hudson Street New York, NY 10014 http: / /www.penguin.com 2 3 20 In this memoir, Kenny Fries explores his life and experiences withhis disability. Having been born with congenital deformities that affected the lowerpart of his body, Fries searches medical records, talks with family and friends, and examinespast relationships in order to better understand his disability. In addition toan understanding of his physical body, Fires also explores his sexuality and personal relationships. Thisis a memoir about disability, but it is also about the discovery and understanding of hisidentity.

TITLE: Thinking in pictures: And other reports frommy life

AUTHOR: Grandin, T.

PUBLICATION INFORMATION: 1995

Bantam Doubleday Dell Publishers Groups, Inc. 1540 Broadway New York, NY 10036 E-Mail: [email protected] http://www.bdd.com/

Ealughipt=res is about the childhood and development of Temple Grandin,a woman with autism. She likens herself to the robotic character, Data, on the science fiction television program, Star Trek: The Next Generation. Shesays words are like a second language to her, noting that she thinks primarily in images. Grandin, who holdsa Ph.D. in animal science and has designed equipment that revolutionized the livestock industry, proposes that genius and autism may sometimes be closely related.

TITLE: Moving violations: War zones, wheelchairs, and declarations of independence

AUTHOR: Hockenberry, J.

PUBLICATION INFORMATION: 1995

Hyperion 114 Fifth Avenue New York, NY 10011

Moving violations is an honest and often humorous account of Hockenberry's lifeas a man with a disability. He takes the reader on a journey in which he reflects upon the events in his life, from the accident that, at age 19, caused a spinal cord injury to his workas a nationally renown broadcast journalist. He does not flinch at talking about the personal aspects of disability. And he shares the adventures of his career, such as ridinga mule up a mountainside with Kurdish refugees who were being driven from their land by the Iraqis

21 2 4 after Desert Storm. Hockenberry also explains how his disability, rather than limiting him, is a window through which he frames his view of the world--how it expands hisgaze and gives him insight that defines who he is and what he does.

TITLE: Bus girl: Poems by Gretchen Josephson

AUTHORS: Lubchenco, L. 0., & Crocker, A. C.

PUBLICATION INFORMATION: 1997

Brookline Books P.O. Box 1047 Cambridge, MA 02238 E-Mail: [email protected] http: I / people .delphi.com /brooklinebks /index .html

This book consists of 25 poems written by Gretchen Josephson,a woman with Down syndrome. She started writing poetry while still in her teens, when she begana job as a bus girl at a restaurant. Her poetry chronicles her life experiences with family, friends, love, and other areas of life. The editors have divided her poetry into sections, which include Bus Girl, Love for Always, Vacations and Travel, Family, Death and Greed, Faith, and Other Poems. Unlike other artistic works such as Musn't grumble edited by Lois Keith, Josephson does not write about disability. Instead, she simply creates poetry about her life.

TITLE: Waist-high in the world: A life among the disabled

AUTHOR: Mairs, N.

PUBLICATION INFORMATION: 1997

Beacon Press 25 Beacon Street Boston, MA 02108 617-742-2100 E-Mail: [email protected] http://www.uaa.org/Beacon/

Nancy Maks, a brilliant essayist and poet who has authored six previous books, reflects upon her experiences as a woman with multiple sclerosis in Waist-high in the world. She discusses such topics as adjusting to change, reconciling body image, experiencing sexuality and pleasure, and seeking equality and justice. She also probes other disability issues, such as assisted suicide and selective abortion, and she revisitsan article she once wrote for Glamour magazine that focused on young people with disabilities.

22 25 TITLE: The me in the mirror

AUTHOR Panzarino, C

PUBLICATION INFORMATION: 1994

Seal Press 3131 Western Ave., Suite 410 Seattle, WA 98121-1041 E-Mail: [email protected] http:/ /www.sealpress.com/

Written by writer, disability activist, and artist Connie Panzarino, The me in the mirror is an autobiography of the life of this amazing woman. Born with Spinal Muscular Atrophy Type III, a rare disease, Panzarino describes her life as one of struggles and triumphs, and tells the stories of her relationships with her family, friends, lovers, her turn to lesbianism, and of her years of pioneering work in the disability rights movement. This book is a must read for anyone interested in understanding the experiences of women with physical disabilities.

TITLE: Nobody, nowhere: The extraordinary autobiography of an autistic

AUTHOR: Williams, D.

PUBLICATION INFORMATION: 1992

Avon Books 1350 Avenue of the Americas New York, NY 10019 http: / /www.avonbooks.com/ avon/ about.html

Donna Williams, who was diagnosed with autism when in her mid 20s, wrote Nobody, nowhere in an attempt to understand herself and to explore how she fit into the world around her. She candidly describes the teasing and mistreatment she experienced at the hands of her family and her ability to use role-playing to interact with others. Williams said of her book, "This is a story of two battles, a battle to keep out 'the world' and a battle to join it. I have, throughout my private war, been a she, a you, a Donna, and finally, an I." TITLE: Somebody somewhere: Breaking free from the world of autism

AUTHOR: Williams, D.

PUBLICATION INFORMATION: 1994

Times Books Random House Trade Group New York, NY http:/ /www.randomhouse.com/trade/

This autobiography by Donna Williams poignantly and defiantly illustrates her life and struggle with autism. She powerfully articulates her "awakening to the world" and how she fought for others to do the same. She presents her perspective of autism and reminds the readers that it is crucial that they seek to understand her perspective and the perspectives of others with autism rather that imposing their own notions onto someone else. She asserts that she has taken control of her autism, that it does not control her.

TITLE: Like colors to the blind

AUTHOR: Williams, D.

PUBLICATION INFORMATION: 1996

Times Books Random House Trade Group New York, NY http: / /www.randomhouse.com/ trade /

Like colors to the blind is Donna Williams' third book about her life as a person with autism. When she was diagnosed with autism at the age of 25, she wrote Nobody. nowhere as an attempt to explore her experiences as a person with autistic symptoms. In her sequel, Somebody. somewhere, she continued to analyze how role playing and ritualistic behavior helped her to cope with her environment, and how she was able to begin to replace these mechanisms with genuine interactions. This, her latest work, builds upon the last, addressing relationships and emotions. Williams describes her relationship with Ian, who became her best friend and eventually her husband.

_

24 2 7 TITLE: Women with disabilities: Found voices

AUTHORS: Willmuth, M., & Holcomb, L.

PUBLICATION INFORMATION: 1994

The Haworth Press, Inc. 10 Alice Street Binghamton, NY 13904-1580 E-Mail: [email protected] http://www.haworthpressinc.com/

Written almost entirely by woman with disabilities, Women with disabilities:Found voices is a deeply personal and compelling discourse of the body, violence, sexuality,and disability. The authors offer a multicultural perspective which speaks franklyabout their experiences. They discuss the abuses they have endured and explain how they have struggled with the issue of being a woman witha body that does not conform to the image that society values.

2 25 s ovies and Documentaries

This section offers just a few of the many movies and documentaries which are related to the field of disability studies. We have highlighted a select few that reflect a variety of perspectives, and have listed many more (the more mainstream films). For descriptions of these films, we recommend the web site of the Office of Special Education at the University of Virginia, Individuals with Special Needs in Films. Their web address is:

http:/ /curry.edschool.virginia.edu/go/cise/ose/information/film

Another web site to refer to is "Filins Involving Disabilities." The web address is: '!' http:/ /www.caravan.demon.co.uk

You may also want to check under a more general directory. For that, we recommend the Internet Movie Database. Its address is:

http://us.imdb.com

While we certainly would recommend many of these titles, we are not certain of the availability of all of them.

TITLE: Breathing lessons

DIRECTOR: Jessica Yu

PRODUCER: Inscrutable Films

DATE: 1996

35 minutes

The award-winning documentary, Breathing lessons, addresses what life as a person with a disability is like from the perspective of Mark O'Brien. O'Brien, who isa poet and journalist, is paralyzed and uses an iron lung. Through his poetry and his insightful commentary, he reflects on such issues as the meaning of life, death, sex, relationships, creativity, and religion.

26 TITLE: Brother's keeper

DIRECTORS: Joe Berlinger and Bruce Sinofski

PRODUCER: American Playhouse Theatrical Films

DATE: 1992

120 minutes

The lives of the Ward brothers, farmers ina rural community in upstate New York, are disrupted when the oldest brother, Bill, dies and his brother, Delbert, is accused of his murder. Brother's keeper focuses on the outpouring of support Delbert receivedfrom the community. To the townspeople, the Ward boys, as theywere affectionately called--Bill, Delbert, Lyman, and Roscoe--were quiet men who lived ina run-down shack and farmed the land on which they grew up. The film chronicles the events surrounding Bill'sdeath and Delbert's trial, including the townspeople's efforts to raise funds forDelbert's defense, their support of his innocence, and their refusal tosee the Ward brothers through the lens of mental retardation.

TITLE: Self Advocates Becoming Empowered

PRODUCER: Act Video Products

DATE: 1997

20 minutes

Self Advocates Becoming Empowered is about people with cognitive disabilities forming a national organization to work on issues they deem important, suchas closing institutions, exercising their rights as citizens, supporting people to live in communities, and opposing injustice in the criminal justice system. Likening their movementto the civil rights movement of the 60s, many of the advocates speak out about the importance of their mission to people with disabilities.

,l+no^r. 1.-mte,nt, ,

3 0 27 TITLE: Selling murder: The killing films of the Third Reich

DIRECTOR: Joanna Mack

WRITER AND RESEARCHER: Michael Burleigh

PRODUCER: Domino Films

DATE: 1991

This is a chilling Nazi propaganda film about the genocide of people with disabilities during the Second World War. Under what the Third Reich termed the "hereditary health law," they convinced doctors that killing people with mental or physical disabilitieswas for their own good, and the good of the Aryan nation at large. The original film makers used shadows and poor lighting to make people seem grotesque, and played on the medical model of disability in terms of what is "abnormal" and "normal," and even "human" and "not human." This is a powerful film that should generate interesting discussions if used in a disability studies class. Please note: This film was aired on the Discovery Channel a few yearsago, and we are not sure of its availability, but it is definitely worth a good search.

-n.

TITLE: Titicut follies

DIRECTOR: Frederick Wiseman

PRODUCER: Zipporah Films

DATE: 1967

83 minutes

Although more than 30 years old, Titicut follies remains a classic, depicting institutional life in a mental health facility. The 1967 Wiseman film is named for and centers around a talent show, the Titticut Follies, held for the inmates of the Bridgewater State Mental Hospital, in Massachusetts. While scenes from the talent showare disbursed throughout the film, the stark reality of daily life in the institution is revealed. There is little regard for the inmates' human dignity; not only is what they have tosay dismissed, but they are subjected to strip searches, lack of privacy, ridicule, and isolation. Titticut Follies is a grim film that reflects the barren existence of life in a mental hospital.

28 31 TITLE: Vital signs: Crip culture talks back

DIRECTORS: David Mitchell and Sharon Snyder

PRODUCER: Studio Pulse Communication, Green Bay, WI

DATE: 1997

48 minutes

In the documentary Vital signs: Crip culture talks back, participants ina national Disability and the Arts conference explore the politics of disability through their performances, which indude such texts as art, fiction, poetry, stand-up comedy, drama, and personal stories. It features such disability rights activistsas Cheryl Marie Wade, Mary Duffy, and Harlan Hahn, and also includes group debates and behind-the-scenes conversations. The film also addresses the culture of disability and the shared struggle people with disability have in gaining access to influential cultural institutions.

TITLE: When Billy broke his head... and other tales of wonder.

DIRECTOR AND PRODUCER: Billy Golfus and David E. Simpson

WRITER AND NARRATOR: Billy Golfus

DATE: 1995

First premiering on PBS in 1995, this film by Billy Golfus explores the concept of disability rights and takes a close look at the disability rights movement and those involved. Golfus, who has a traumatic brain injury, intertwines his story with the experiences of others who are struggling for their rights. This is a must see.

TITLE: No apologies

PRODUCERS: Disabled Women's Theatre

DATE: 1994

This 28-minute video is by Wry Crips Disabled Women's Theatre, which isa comedy troupe of women who are at the forefront of the disability culture movement in the San Francisco Bay area. It is comprised of disabled and able-bodied women of diverse racial,

29 32 social, and class background. Wry Crips uses humor as a form of resistance. Their performances, comprised of poetry, readhigs, signing, performing skits, and reading narratives, all resist medical paradigms, social stereotypes, economic oppression,or individualist assumptions regarding disability issues. The women of Wry Crips embrace disability, seeing beauty and acceptance where able-bodied people onlysee difference and abnormality.

30 IST OF MORE MAINSTREAM FILMS]

Awakenings Benny and Joon The Big Parade Born on the Fourth of July Char ly Children of a Lesser God Coming Home Dominick and Eugene The Elephant Man Forrest Gump Freaks Gattaca Mask The Miracle Worker My Left Foot One Flew Over the Cuckoos Nest Orphans of the Storm Passion Fish Rain Man Skallagrig Sling Blade The Waterdance What's Eating Gilbert Grape Whose Life is it, Anyway?

3 4 31 cademic Programst

The following section offers a description of colleges and universities that offer classes, programs, or concentrations in Disability Studies. They range from academic institutions that offer classes representative of the Disability Studies perspective to institutions that offer advanced degrees in this field or related fields. For an overview of Disability Studies in general, please see "Disability Studies 101: From Werewolves to Hephaetus" by Joshua Harris Prager in The Wall Street Journal, August 31, 1998, and "Pioneering Field of Disability Studies Challenges Established Approaches and Attitudes," by Peter Monaghan, in The Chronicle of Higher Education, January 23, 1998.

Academic Institution: Syracuse University

Program Name: Disability Studies Concentration

Address: Cultural Foundations of Education School of Education 805 South Crouse Avenue Syracuse, NY 13244-2280

Contact: Steven J. Taylor, Ph.D. Coordinator, Disability Studies Concentration

Phone: (315) 443-3851

E-Mail: [email protected]

WWW: http://soeweb.syr.edu/thechp/disstud.htm

Location on Campus: Cultural Foundations of Education, School of Education

Program Description: The Disability Studies concentration applies social, cultural, historical, and philosophical perspectives to the study of disability in society. Building on the tradition of Syracuse University's School of Education in the area of disability, the concentration is designed to help students understand and work to overcome the barriers to full participation of people with disabilities in community and society.

32 35 Consistent with the Syracuse tradition, this concentration stands at the forefront of change and new ways of thinking about and accommodating people with disabilities. While it adopts a cross-disability perspective, it devotes special attention to people who have been labeled as developmentally disabled or mentally retarded.

Program Emphasis: As a graduate student pursuing this concentration, you will have a program of study that matches your own interests with the current activities of faculty and associates. Through course work, independent studies, thesis or dissertation research, or internships at the School of Education's disability centers and institutes, you will examine a range of issues confronting people with disabilities, including deinstitutionalization and community integration, current trends and controversies, advocacy and self- advocacy, the sociology of deviance and acceptance, community and family support services, media images of disability, gender and disability, and disability policy. In addition, you will be exposed to strategies for policy analysis, program evaluation, and community education. Depending on your interests and program of study, you will be encouraged to take courses both in the School of Education and other schools at Syracuse University, including the Maxwell School of Citizenship and Public Affairs, the Law School, and the School of Social Work.

Program Requirements: Master of Science (M.S.) A minimum of 24 credits beyond the bachelor's degree and a thesis (3 or 6 credits) or a minimum of 30 credits beyond the bachelor's degree and a comprehensive examination. An internship (3 or 6 credits) at one of the School of Education's disability centers or institutes or another organization approved by the student's advisor. A minimum of 3 credits of qualitative or quantitative research methodology.

Doctor of Philosophy (Ph.D.) A minimum of 90 credits beyond the bachelor's degree; one-half of the credits, excluding dissertation hours, may be transferred from another university with the advisor's approval.

33 36 A minimum of 12 credits of research methodology. A research apprenticeship (journal quality scholarly article) completed under the supervision of a faculty member. Qualifying examinations. An internship (6 to 12 credits) at one of the School of Education's disability centers or institutes or another organization approved by the student's advisor. Dissertation (typically, doctoral students register for 12-24 dissertation credits during the course of their studies).

Academic Institution: Suffolk University

Program Name: Master's of Public Administration/Disability Studies

Address: Eight Ashburton Place Boston, MA 02108-2770

Contact: Professor Richard Beinecke

Phone: (617) 573-8062

E-Mail: [email protected]

Location on Campus: Department of Public Management of the Frank Sawyer School of Management

Program Description: Students take three semester credit courses, and also have independent studies, an internship, and a comparative policy course in Dublin and/or Puerto Rico.

Program Emphasis: Policy Analysis and Public Management

Program Requirements: Nine required MPA courses plus five additional courses required by the disability studies concentration. Three additional classes are also required.

Courses offered: Disability Rights, Disability Issues, Disability and Public Policy, The U.S. Health System, Changes in Disability Policy

34 3 7 Academic Institution: University of Illinois at Chicago

Program Name: Department of Disability and Human Development

Address: Institute on Disability and Human Development 1640 West Roosevelt Road Chicago, IL 60516

Contact: William J Schiller Clinical Assistant Professor of Human Development

Phone: (312) 413-1536

E-mail: [email protected]

WWW: http:/ /www.uic.edu/depts/idhd/idhdfull.html

Location on Campus: College of Associated Health Professionals

Degree Programs: Masters in Disability and Human Development Masters in Rehabilitation Technology Ph.D. program in Disability Studies jointly developed with the Department of Occupational Therapy and the Department of Physical Therapy. Post-doctoral research fellowships in the following areas: aging and disability, assistive technology, dual diagnosis, and policy analysis.

Program Description: This interdisciplinary program provides students with experience and education in the College of Associated Health Professions, the School of Public Health, and the Colleges of Education, Engineering, Social Work, and the Department of Psychology. The program provides field experience through clinical programs in assistive technology, diagnostics, and mental health for people with mental retardation. Field-based internships are also available.

Program Emphasis: Master's Program - emphasis in the newly proposed Department of Disability and Human Development, with specializations in Disability Studies, Rehabilitation Technology, and Disability Policy and Organization.

Eharrogriun: The program has an interdisciplinary approach to the study of disability, examining the 35 38 social, political, biological, and cultural determinants of disability. The focus of student learning may include one of the following: a socio/cultural approach to disability, policy and practice, political and economic issues, vocational issues, family issues, and many more.

The DHD web site has extensive information, including program requirements and dass listings for both the Master and Ph.D. programs. Please see the URL listed above for more information.

Academic Institution: University of Maine, Orono

Program Name: Interdisciplinary Disability Studies

Address: 115 Corbett Hall Orono, ME 04469

Contact: Elizabeth DePoy

Phone: (207) 581-1469

E-Mail: [email protected]

WWW: http://cardinal.umeais.maine.edu/-cci/ccihi.html

Location on Campus: Center for Community Inclusion

Program Description: This program prepares both undergraduate and graduate students to be leaders in the field of developmental and related disabilities. It is a University-Affiliated Program (UAP) which provides an interdisciplinary education in the field of disability. The program offers practica, coursework, assistantships, and internships in university and conununity settings throughout the state, and is affiliated with other universities in Maine.

The College of Education, in collaboration with the Center for Community Inclusion, offers a program that prepares students to aid people with disabilities in school-to-work transition. Many of these courses are interactive television courses, which allows people from all over Maine to enroll.

36 3 3 Program Emphasis: Developmental Disabilities

Program Requirements: Students can choose elective courses from departments such as Education, Communication Disorders, Human Development, Nursing, Psychology, Sociology, Public Adininistration, and Social Work.

Practica also are available and are developed individually to meet the needs of students.

Degree Program: Personnel Preparation Program for Transition Specialists

Courses Offered: Developmental Disabilities Across the Lifespan Interdisciplinary Seminar in Developmental Disabilities (Intro and Advanced) Positive Approaches for Challenging Behavior

Academic Institution: Medaille College

Program Name: Disability Studies Certificate

Address: 18 Agassiz Circle Buffalo, NY 14214

Phone: (716) 884-3281

FAX: (716) 292-1582

WWW: http://www.medaille.edu/ds.html

Program Description: Students may receive certificates in disability studies, approved by the State Education Department. A total of 33 credit hours are required.

Program Requirements: Students must complete each course listed below and maintain a cumulative grade point average of at least 2.00. The last 12 credit hours must be completed at Medal lle College and an application for the certificate must be filed in the Office of the Registar prior to registering for the last course.

37 4 0 Courses Offered: HSV 100 - Introduction to Human Services Across the Life Span or CYS 100 - Introduction to Child and Youth Services CYS 280 - Understanding Multicultural and Diverse Populations HSV 120 - The Dynamics of Interviewing HSV 210 - Introduction to Disabilities HSV 211 Introduction to Disability Law HSV 285 Workshop in Major Disabilities HSV 301 - Program Planning and Administration HSV 377 - Field Experience II CYS 377 Field Experience I (6 credits) SSC 200 Human Relations WRT 175 College Writing II

Academic Institution: Hunter College of the City University of New York

Address: 695 Park Avenue New York, NY 10021

Phone: (212) 772-5745

Contact: Phyllis Rubenfeld or Simi Linton

E-Mail: [email protected]

Location on Campus: Disabilities Studies Project

Program Description: An undergraduate program in disability studies has been proposed for the 1998-1999 academic year. No further information is available.

Academic Institution: The University of Leeds

Program Name: MA/Diploma in Disability Studies and MA/Diploma in Disability Studies by Distance Learning

Address: Leeds, LS2 9JT UNITED KINGDOM

Phone: 0113 233 4408

Fax: 0113 233 4415

38 4 1 WWW: http://www.leeds.ac.uk/sociology/pgbroch.disabil.htm

Contact: Colin Barnes, Director Debbie Westmoreland, Postgraduate Secretary

Location on Campus: Department of Sociology and Social Policy

Program Description: This advanced scheme of study is designed for people working or planning a career in the field of disability, and is especially suitable for service providers, practitioners and policy makers induding: educational psychologists, educationalists in further and higher education, physiotherapists, occupational therapists, social workers, community nurses, doctors, architects, town planners etc. These courses can easily be fitted in with a busy working life. Students are required to attend the University only one afternoon or one evening a week over one or two years, depending on the option chosen.

This unique and popular program of study provides students with an in-depth perspective on a widerange of disability related issues. It is offered ona modular basis, and each module is designed to give fresh insights into the concepts associated with disablement in modern society and will provide a basic grounding in the principles and theories upon which practice is based.

Program Emphasis: Disability as an equal opportunities issue will be explored through the study of contemporary organizations and institutionalized practices. Thecourse is designed to enable students to bridge the gap between theory and practice.

For the Diploma in Disability Studies studentsare required to study four modules as follows:

Module 1: Theories and definitions of disability Module 2: Social policy, politics and disabled people Module 3: Culture, researching disability and changing practice Module 4: Disability project

39 4 2 For the MA in Disability Studies students are required to study modules 1, 2, and 3 as for the Diploma in Disability Studies and two further modules described in more detail at the WWW site at the address listed above.

Information on the MA/Diploma in Disability Studies by Distance Learning can be viewed at http://www.leeds.ac.uk/sociology/pgbroch.disabdl.htm

- Academic Institution: University of Hawai'i at Manoa

Program Name: Pacific Partnerships in Disability and Diversity Studies

Address: Center on Disability Studies University of Hawai'i at Manoa 1776 University Ave UA 4-6 Honolulu, HI 96815

Contact Person: David Pfeiffer, Ph.D.

Phone: (808) 956-9202

Fax: (808) 956-3162

E-Mail: [email protected]

Program Description: Beginning September 1998, the primary disability studies program at the University is the Pacific Partnerships in Disability and Diversity Studies, which prepares students to be leaders and researchers in areas pertaining to children and youth with disabilities. The program has a dual focus designed to increase leadership personnel to implement program improvement, and to infuse cultural competence in services for children and youth with disabilities.

The program is an interdisciplinary approach, includes core seminars, research, and internship experiences.

Key components of leadership development in disability studies and cultural diversity is faculty and student mentorship. Peer mentorship also will be fostered by linking "partner" doctoral students, based on professional and personal interests in Pacific cultures. 40 4 3 Other programs include Maternal and Child Health Leadership Education in Neurodevelopmental and Related Disability Programs, as well as more than 20 others relating to community outreach in the Pacific Rim, Hawaiian children with mental health problems, assistive technology, and other areas.

-ar-rt--os (-11

4 4 41 r- ournals and Magazines

TITLE: Disability & Society

ADDRESSES:

Subscriptions: 875-81 Massachusetts Avenue Cambridge, MA 02139

Submissions: Professor Len Barton Disability & Society Division of Education University of Sheffield 388 Glossop Road Sheffield S10 2JA UNITED KINGDOM

PHONE: 1-800-354-1420

WWW: http:/ /www.carfax.co.uk/dso-ad.htm

SUBSCRIPTION RATES: Institutional: $416 (annually) Individual: $118

FREQUENCY: Published 5 times a year (February, April, June, September, and November)

AVAILABILITY: Journal and on-line (with paid subscription)

Disability & Society is an international journal providing a focus for debate about such issues as human rights, discrimination, definitions, policy and practices. It appears against a background of change in the ways in which disability is viewed and managed.

Definitions of disability are more readily acknowledged to be relative; custodial approaches are seen as inadequate and unacceptable--placing greater emphasis on community care and integration. However, policy intentions may not have the desired effects on the realities of everyday practice and policy changes themselves may be merely cosmetic, or appropriate but unfunded.

While publishing articles that represent all the professional perspectives, the journal also provides an opportunity for the consumers of the services to speak for themselves.

42 4 5 TITLE: Disability Studies Quarterly

ADDRESSES:

Subscriptions: David Pfeiffer Center on Disability Studies University of Hawai'i at Manoa 1776 University Avenue, UA-4-6 Honolulu, HI 96822

Submissions: Every article published in the Quarterly is invited and reviewed by the editor or special editor. A call for manuscripts on specific topics is usually announced in each issue. Contributions or suggestions can be sent to David Pfeiffer at the address above.

SUBSCRIPTION RATES*:Institutional $45 (Annually) Individual $35 SDS member $30 Student $20 Low-income Whatever is affordable (* Subscription is not included in membership)

FREQUENCY: Published 4 times a year by the Society for Disability Studies.

AVAILABILITY: Journal, diskette, or via e-mail.

The Disability Studies Quarterly is a multidisciplinary and international journal of interest to social scientists, scholars in the humanities, disability rights advocates, and others concerned with the problems of people with disabilities. The purpose of the Quarterly is to provide a place where people from diverse backgrounds can share ideas and toengage in dialogues that cut across disciplinary backgrounds and substantive concerns. The Quarterly is committed to developing theoretical and practical knowledge about disability and to promoting the full and equal participation of persons with disabilities in society. 14

4 6 43 TITLE: Journal The Association Of Persons With Severe Handicaps GASH)

ADDRESSES:

Subscriptions: 29 W. Susquehanna Avenue Suite 210 Baltimore, MD 21204 (410) 828-8274 FAX (410) 828-6706

Submissions: Lori Goetz, Editor JASH Editorial Offices Department of Special Education & Communicative Disorders San Francisco University 1600 Holloway Avenue San Francisco, CA 94132 (415) 338-1306

SUBSCRIPTION RATES*:Agency or library $190 (Annually) General $ 85 Student or parent $ 45 * Membership in TASH includes the journal; see membership information under "ORGANIZATIONS"

FREQUENCY: Published quarterly

The Journal of The Association for Persons with Severe Handicaps GASH) is a quarterly journal published by TASH (formerly The Association for Persons with Severe Handicaps), that emphasizes articles that report original research, authoritative and comprehensive reviews, conceptual and practical positions papers that offer new directions, and effective assessment and intervention methodologies and service delivery model program descriptions.

TITLE: Journal of Disability Policy Studies

ADDRESSES:

Subscriptions: Department of Rehabilitation, Education, and Research University of Arkansas 346 N. West Avenue Fayette, AR 72701 Submissions: Kay Fletcher Schriner, Ph.D., Editor Department of Rehabilitation, Education, and Research University of Arkansas 346 N. West Avenue Fayette, AR 72701

PHONE: (501) 575-3656

FAX: (501) 575-3253

4 SUBSCRIPTION RATES: Individual and institutional $24 (Annually) Additional $5.00 charge for international subscriptions

FREQUENCY: Published quarterly.

AVAILABILITY: Journal, tape, or diskette.

The Journal of Disability Policy Studies addresses a broadrange of topics on disability policy from the perspectives of a variety of academic disciplines and publishes articles pertaining to both macro-policy issues (such as the social constructions which direct and constrain policymakers) and micro-policy issues (such as legislative remedies and regulatory matters).

TITLE: Mental Retardation

ADDRESSES:

Subscriptions: AAMR 444 North Capitol Street, NW Suite 846 Washington, DC 20001-1512 (202) 387-1968 or 1-800-424-3688 FAX (202) 387-2193

Submissions: Steven J. Taylor, Ph.D., Editor Center on Human Policy School of Education, Syracuse University 805 S. Crouse Avenue Syracuse, NY 13244-2280 (315) 443-3851 FAX (315) 443-4338 TTY: (315) 443-4355

4 8 45 SUBSCRIPTION RATES: 1 year $ 95 2 years $170 3 years $255 Single issue $ 30 Additions: For Canada $ 6 Overseas $ 15

FREQUENCY: Bi-monthly

Mental Retardation (MR) is a journal of policy, practices, and perspectives in the field of mental retardation. As a journal with an applied focus, MR publishes essays, qualitative and quantitative research articles, conceptual papers, comprehensive reviews, case studies, policy analyses, and innovative practice descriptions and evaluations. The style, methodology, or focus of an article is less important than its quality and contribution toour knowledge.

TITLE: Mouth

ADDRESS: 61 Brighton Street Rochester, NY 14607-2656

FAX: 716-442-2916

SUBSCRIPTION RATES: (Annually) Organization/school/hospital: $48 Personal subscription + 1 "hardship" subscription: $32 Person with a disability or family member: $16 "Hardship" subscription $ 2 "Recovering Professional" (personal plus 2 hardship subscriptions) $48 Outside US add $7.00 USD

-FREQUENCY: Published 6 times a year

AVAILABILITY: Magazine, large print, round-trip audiocassette.

This thought-provoking magazine features investigative journalism, news, and interviews with disability rights activists, reserving some of its harshest criticism for the "helping professions." Mouth also publishes poetry and essays written by people with disabilities, and does not include commercial advertisements.

46 4 9 TITLE: The Ragged Edge (formerly The Disability Rag)

ADDRESS: The Advocado Press P.O. Box 145 Louisville, KY 40201

SUBSCRIPTION RATES: Organization $35.00 (Annually) Individual $17.50 International $42.00

FREQUENCY: I Published 6 times a year

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54 5 7 REPRINT

DISABILITY STUDIES AND MENTAL RETARDATION By Steve Taylor

AND

SELECTED ANNOTATED BIBLIOGRAPHY ON DISABILITY STUDIES AND MENTAL RETARDATION By Steve Taylor and Perri Harris Reprinted from Di sabilitv Studies Ouarterlv. 16(3), 4-13.

In this brief article, I argue that the study of mental retardation, as a social and cultural construct, belongs in Disability Studies and demonstrate how many of the principles associated with Disability Studies can be applied to the study of mental retardation. At Current Research the conclusion of this article, there isan annotated bibliography of selected books and Disability Studies and Mental articles that. can serve as a foundation for Retardation inquiries in this area. Steve Taylor The perspectives and experiences of Cemer on Human Policy people labeled mentally retarded must provide Syracuse Univenizy a starting point for allresearch and inquiries in the study of mental retardation. Consistent People tagged with the label of mental with a Disability Studies perspective, studies retardation or, if you prefer, cognitive, must focus on how people tagged asmentally intellectual, or developmental disabilityhave retarded view and experience their worlds. In been major targets of social prejudice and contrast to people with disabilitiessuch as discrimination in Western societies. Forced deafness, blindness, or mobility impairments, segregation,state sanctioned abuse and many of those labeledmentally retarded cannot dehumanization, status degradation and public easily communicate their views.From a mortification, involuntary sterilization, denial Disability Studies perspective, this becomes a of fundamental rights,' and even etah2nRsiR -problem to be solved how can we occupy prominent roles in thehistory of understand their subjective experience? mental retardation. No one can deny that rather than grounds for dicmitving theirpoints people labeled mentally retarded have endured of view. many harms at the hands of thenondisabled Mental retardation is a social consauct majority. and cultural artifact. This is not the place to Yet those interested in understanding provide a crcal review of efforts to measure the social phenomenon known as mental the illusive concept we call intelligence or to retardation and reversing the historical pattern explain how mental retardation has been have yet to find a comfortable intellectual and reified. Selections in the followingannotated academic home. On the one hand, special bibliography address these issues in depth. education, vocational rehabilitation, and other Suffice to say: of course, there are differences helping professions are dedicated to treating or among people in intellectualability, but this "fixing" what is presumably wrong with the does not prove the objective existenceof the mentallyretarded. Evenhumanistic construct of mental retardation orthe utility of approaches in these fields are based on a belief dividing humanity into two groups the intheobjectiveexistenceofmental retarded and non-retarded. Who is or is not retardation. On the other hand, it has not considered mentally retarded hinges on always been clear whether people labeled arbitraryandprofessionallycontrolled mentally retarded can fit under the broad definitions and classification procedures. The umbrella of the disability rights movement and construct of mental retardationexists in the Disability Studies as an area of inquiry. minds of those who label other persons,and 4 BEST COPYMAKABLE 5 not those so labeled. togetherrepresentsanaffirmationand People labeled mentally retarded celebration of common humanity. represent a minority group. The category of Theimportantrolethatfamily people labeled mentally retarded represent an members play in the lives of people labeled historically powerless and discriminated- mentally retarded must be recognized. For against minority group. The minority group various reasons, some legitimate and some model associated with Disability Studies not, parents and other family members are generally (Hahn, 1987; Linton, 1994) applies influential in the lives of children and adults equally well to people with this label. labeled mentally retarded. Scholarship in this That said, the concepts of a disability area includes inquiries into the views and culture and a disabled identityare foreign to experiences of families of people with the people labeled mentally retarded.If the mental retardation label. It should go without starting point for inquiries into the disability saying that the voices of family members experience is the point of view of disabled cannot- be regarded as a substitute for the persons themselves, then we must take voices of labeled people themselves. seriously the perspectives of people defined as Inquiries into the social, cultural, mentally retarded.For people labeled as political, and economic situation of people mentally retarded, the concept of culture labeled mentally retarded must be grounded in carries negative meanings.One meaning concepts and philosophies associated with associated with culture is the professional Disability Studies generally. The classics and constnict of cultural-familial retardation, a the heroes guiding Disability Studies can also construct rooted in the Eugenics movement guide those wishing to understand and change and used to justify sterilization and other the situation of people labeled mentally policies designed to prevent the spread of retarded. The point of studies in this area is feeblemindedness. not to establish a separate field of inquiry, but Anothermeaningofcultureis to explore how people labeled mentally Goffman's (1961) notion of the subterranean retarded can be included in broader discussions life of inmates of total institutions.In this of such issues as disability, gender, race, latter sense, people labeled retarded may be culture, and class. said to share a distinctive culture to the extent Thisraisestheinterestingand that they have been forcibly removed from challenging question of who should speak for their families and communities and subjected people labeled mentally retarded in academic to the routines of various forms of total and scholarly circles. Should the voices of institutions and human service settings. members of other groups who have faced Whereas many leaders of the disability societal prejudice and discrimination be rights movement claim pride in an identity as a privileged? Or should we listen to parents and disabledperson,representativesof the family members of people labeled mentally growing "self-advocacy" movement reject the retarded and especially those defined as mentally retarded tag and insist on being severely disabled? Should long-term allies and defined as "people first." What draws people advocates of people defined as mentally labeled mentslly retarded togetherisa retarded lead the way? Each of these groups recognitionoftheiroppressionand can play an important role in studies in this determination to oppose how they have been area. defined and treated in society. Coming Consistent with a Disability Studies

5

6 0 perspective, however, people labeled mentally christraasimazgalory:...9.42hatographicsssay retarded must be permitted to speak for namencaLicaroation. Syracuse, NY: Human themselves. The culture of academe, with its Policy Press. emphasis on literacy and intellectual skills, This is a reprinted edition of Blatt and poses obstacles to the participation of people Kaplan's1966 photographic expose of so labeled in research and training in this area. conditions in America's instinnions. Shot with A culnre that evaluates students by their SAT a hidden camera, ChristmasjiLEurgamix or GRE scores hardly presents a welcoming depictsovercrowded anddelrim2ni7ing environment for those with a substandard IQ. conditions found at eight institutions in the Herein lies the challenge for those of us Northeast. Blatt was one of the few concerned with understanding this social professionals to spa& out against institutional cultural phenomenon. We must find creative warehousing in the 1960s. ways of involving people labeled mentally Bogdan, R. (1988).Freak chow- retarded in our work, whether through oral Erestatingliiiman.Dattilies.forimusemeaund histories and autobiographies, jointly authored profs. Chicago: University of Chicago Press. articles, guest lectures and presentations, or A social history of the depiction of professional staff appoinnnents at research and "human oddities," including people with training centers. disabilities, for amusement and profit. Ereak Above all, we must stay close to the Show is a classic study of depictions of reality and experience of those we seek to disability in popular culture. understand. Ferguson, P. M. (1992). Abandoned

References sexerdX-rgiarsics142 Goffman, E.(1961). Asylums. 1920. Phil2delphia: Temple University Press. Garden City, NY: Doubleday. A historical study of social policy and Hahn, H. (1987).Advertising the practice toward people labeled "idiots" or acceptably employable image: Disability and "severely retarded." Ferguson examines the capitalism. Eolicy_amdiellournal, 15, 551- problem of "chronicity" and shows how people 570. with the most severe disabilities have been and Linton, S. (1994). Disability studies continuetobe excluded from reform vs. Disability policy studies Disability Studias movements. Quarterly, 14(2), 23-26. Gelb, S. A. (1995). The beast in man: Degenerationism and mental retardation, 1900-1920. MentalBesardation, 33(1), 1-9. Biblintaphy Gelb describes the chain of scientific and theological reasoning that led to the Selected Annotated Bibliography on perception of people with mental retardation Disability Studies and Mental as a social menace prior to theeugenics Retardation movement wound the turn of the 20th cenatry. Compiled by Steve Taylor and Perri Harris According to degenerationism, the "feebleminded" formed a n3issing link between History humans and lower spethes. Gould, S. J. (1981). mamiscacasurz Blatt,B., & Kaplan, F. (1974). slf_mao. New York: W. W. Norton & Co.

6 61 This is a history of attempts to define clinical decisions are influenced by other andmeasuretheillusiveconceptof factors such as economics, bureaucratic intelligence. Gould does a masterful job of exigency, politics, service traditions, and demonstrating the ideological assumptions societal prejudice. underlying psychological science. Bogdan, R., & Biklen, D. (1977). Smith, J. D. (1985).Minds_made Handicapism. SoldaL.Policy, 7(4), 14-19. fcchl=_IlleinXtUniikgacuLtheicallikaks. The authors introduce the concept of Austin, TX: PRO-ED. handicapism as a way to understand disability Debunking Goddard's infamous as a social construct. Theydefine it as a "set Kallikak study that purported to show the of assumptions and practices that promote the hereditary transmission of "feeblemindedness, " differential and unequal treatment of people Smith traces members of the ICallikak family because of apparent or assumed physical, and demonstrates how facts were twisted by mental, or behavioral differences." the eugenicists to prove their theories. Handicapism results in prejudice, stereotypes, Trent, J. W. (1994). Jnventing the and discrimination. fectge.minct..AbistocufmeataLreiardadanin Dexter, L. (1994). On the politics and the_linitaSIatts. Berkeley: University of sociology of stupidity in our society. Mental California Press. Retardation, 32, 152-155. A sobering historical analysis of This is a reprint of an article originally institutions and mental retardation. Arguing published in the early 1960s. Dexter offers on from a political economy perspective, Trent of the first discussions of the social meaning of locates the source of abuse of people with mental retardation. Using labeling theory and mental retardation in the tendency to equate a social constructionist approach, he argues moral worth with economic productivity. that traditional notions of mental retardation Wolfensberger, W. (1975). 112t =tin and intelligence need to be more critically and nature of our institutional models (Rev. examined. Ed.). Syracuse, NY: Human Policy Press. Nibert, D. (1995).The political This is an analysis of the development economy of developmental disability.Cthical of, and growth in, institutions in the 19th and Sociologx, 21(1), 59-80. 20thcenturies. The book examines The article outlines the history of the institutionalization in terms and philosophies of treatment of people with disabilities from a leaders in the field of mental retardation. This historic materialist perspective. Framing his book contains the foundationsfor discussion around issues of political economy, Wolfensberger's influential writings about the author argues that the experiences of "normalization* (now called socialrole people with disabilities, from work to cultural valorization). devaluation, stems from the political and economic context. He further asserts that Theory. exclusion of people with disabilities from the labor force and society, and by making them Bilden, D. (1988). The myth of clinical scapegoats for economic and social problems. judgment. lournalsiLSociaLlssugs, 44(1), have served to legitimate 20th century 127-140. American capitalism. Ibis article challenges the primacy of professional decision-making and argues that

7 62 Social and Cultural Studies former inmates of institutions for people with mental retardation.The author addresses Bercovici, S. (1983).Batters_tn stigma, passing, and the role for normal nor=lization. Baltimore: University Park benefactors. Press. Edgerton, R., & Gaston, M. A. (Eds.) Focusing on people with mental (1991)."I've seen_itall!"..Lives of older retardation living in seven residential care prirsons_ailli_mcniaL-Lciardathan_in....the facilities, Bercovici discusses how the .human community.Baltimore:Paul H. Brookes service system employs practices that promote Publishing Co. dependency, passivity, fear, and incompetence The authors offer life histraies of nine for the people receiving these services. She elderly people who have lived independently in links these problems to the larger service the comMunity for at least thirty years. ?hese delivery system and to a dominant cukure that qualitative studies are based on participant oppresses and controls a subordinate group's observation and highlight each person's aspirations to achieve a normal life style. backgronnd, familyhistory,institutional Bogdan, R., & Taylor, S. J. (1989). experience, and community life. Relationships with severely disabled people: Ferguson, P. M., Ferguson, D. L., & The social construction of humanness. Sada' Taylor, S. J. (Eds.) (1992).Intamming ProhlemS, 36, 135-148. slisability.1.9.4ualitati.uzeader. New York: The authors discuss how nondisabled Teachers College Press. people define their caring and accepting A compilation of qualitative and relationshipswithpeoplewithsevere interpretive studies of people with disabilities disabilities: The authors frame their discussion or their families. The chapters aredivided into aroimd a sociology of acceptance and identify four parts:disability at the edges of life, four dimen.sions which maintain humanness of disability and the schools, disability and the the people with severe disabilities: attributing community, and disability and culture. thi*licingto the other, seeing individuality in the Goode, D. (1994). A world withrmt other, viewing the other as reciprocating, and Egrau_IlicmciaLsigustnisaiga.gishildrgn defining social place for the other. hozajkaimulblind. Philadelphia: Temple Bogdan, R., & Taylor, S. J. (1994). University Press. The_sfasiaLmtaning_taLmeniaLasardationl Based on his study of two girls who Two life storisNew York:Teachers were born with rubella and aredeaf-blind and College Press. mentally retarded, . Goode argues that despite The concept of mental retardation is a use of formal language,human beings can challenged through life histories based on in- communicate and be understood through other depth interviews with former inmates of means. He shows how theChildren created institutions for people labeled retarded. The their own set of symboLs to construct their authors argue that mental retardation is not a reality using senses other sight and sound. real entity, but rather a social construction. Goode, D. (1992). Who is Bobby? Edgerton, R. B. (1993). Thtsiloak.of Ideology and method in the discovery of a compuencr.L2xxised.and. updatcd. Berkeley: Down Syndmme person's competence. In P. University of California Press. M. Ferguson, D. L. Ferguson, & S. J. Taylor This updated edition of a classic (Eds.), Interpresingslisabili ethnography in mental retardation focuses on =du (pp. 197-212). New York: Teachers

8 College Press. Theauthorsexploreissuesin Goode uses an "emic" approach to the community living from the perspective of studyofpeoplewithdevelopmental people with mild developmental disabilities. disabilities. This approach is contrasted with Participants report imposed control by service typical "etic" or medical/objective approach. providers and isolation from the community. An emic approach is a subjective or insider Mostimportant,theywantedtobe point of view that may offer a better independent and in control of their own lives. understanding of the competency of a person Mercer, J.(1973). Labeling the with a developmental disability. mentaxsuaahl. Berkeley: University of Groce, N. (1992). "The town fool." California Press. An oral history of a mentally retarded Based on an 8 year study that used IQ individual in small town society.In P. M. tests to screen 7,000 people for mental Ferguson, D. L. Ferguson, & S. J. Taylor retardation, Mercer discovers that schools (Eds.), IntaPrzIngslisabiliZaAswalitathc label people memally retarded more than any =der (pp. 175-196). New York: Teachers other institution, that minorities are over- College Press. represented in the category of mental Groce explores the life of Millard retardation, and that after leaving school most Fillmore Hathaway, an individual labeled people are no longer included in this category. mentally retarded who lived in a small Mercer examines the social and cultural northeastern town in the late 19th and early aspects of being labeled mentally retarded, but 20th centuries. Groce reports that villagers does not question the construct itself. categorized Millard as the town fool, although Taylor, S. J., & Bogdan, R. (1989). he was an accepted part of the community. On accepting relationships between people Langness, L. L., & Levine, H. G. with mental retardation and nondisabled (Eds.) (1986).Cullatte_antLierazdation. people: Towards an undemanding of Dordrecht, Holland: Reidel. acceptance. Disability..klanclicapA ASSXIIIII, 4, This compilation of ethnographic 21-36. articles fccus on the life experiences of people The authors discuss a "sociology of labeled mildly mentally retarded. They stress acceptance" as a theoretical model for that mental retardation is more of a socio- understanding relationships between people cultural phenomenon than a without disabilities and people with mental medical/psychological one. The articles cover retardation. They state that family, religious the subjects' lives in terms of their childhood, commitment, humanitarian sentiments, and patterns of adapting to everyday life, and their feelings of friendship are all sentiments response to the label of retardation.In expressed by nondisabled people who have addition, the editors offer a discussion about relationshipswithpeoplewithmental life history research of people labeled mentally retardation. retarded, as well as a discussion about Taylor, S. J., Bogdan, R., & Lutfiyya, anthropological contributions to this type of Z. M. (Eds.) (1995).The variety of study. communkysap:ricnac:_Qualitatin_suctimof MacEachen, E., & Munby. H. (1996). famuzzAnd.rigmmun4.1ife. Baltimore: Paul Developmentally disabled adults in community H. Brookes Publishing Co. living: The significance of personal control. The editors present qualitative case Qpalitative Health Research, 6, 71-89. studies that focus on people with disabilities

9 6 4 living in communities andassuming roles as court ordered reformsof Willowbrook, an fuli members of society. The smdies present instimtionforpeoplelabeledmentally the perspectives of the peoplewith disabilities retarded.Rothman and Rothman follow from 1975 to 1982 in or theirfamilies, rather than service providers. events at Willowbrook This provides the opportunity tounderstand an attempt to understandsocial reform and its how people with disabilities makechoices, implications for people beinginstitutionalized. earn a living, formfriendships, and maintain Taylor, S. J. (1988). Caught in the principle family relationships. continuum: A critical analysis of the of the least restrictive environmentJour-nal of Law and Policy The Association for Personswith 5evere Fandirapc, 13 (1), 41-53. Braddock, D., Hemp, R., Bachelder, This article examines the principle L., & Fujiura, G. (1995). The state of tht "leastrestrictive environment" and the stattain.dgiclopmensalgisabilitics (4th ed.). associated "continuum" conceptwhich have Washington, DC; American Association on served as frameworks for thedesign of education Mental Retardation. residential, vocational, and special Published by the AAMR, this book services for people withdevelopmental provides a financial analysis of mental disabilities. The authoridentifiesthe retardation and developmental disabilities conceptual and philosophical flawsunderlying services on a state by state basis.The these notions and arguesfor the need to information is statistical and is presented in the develop new concepts andprinciples to guide formsofgraphs,charts,andtables. the development of services. Information covers the last 16 years, and Wehman, P (Ed.) (1993). ThriADA Paul includes an analysis of trends in developmental mandate for social change. Baltimore: disabilityservices,profiles of resource H. Brookes PublishingCo. allocations and service delivery, and technical Contains articles that explore the impact for information. Topicscoveredinclude importance of the ADA and its institutional services, closure of institutions, people with disabilities andspecifically people trends in community services, and costs of labeled mentally retarded. Thearticles explore reform, family care. such issues as educational Lakin, K. C., Braddock. D., & Smith, empowerment, employmentopportunities, attitudinal G.(Eds.)(1994-2000). Trendsand reasonable accommodations, and milestonesJviental Retardation changes. This is a regular one-page feature of the journal, Mental Retardation. "Trends and Parent and Family Issues Milestones" summarizes current national data closures, state Ferguson, P. M., Ferguson. D.L., & on issues such as institutional Generations of hope: and national deinstinitionalization trends, and Jones, D. (1988). transitions of their federal and state expenditures for Paternal perspectives on the children with severe retardationfrom school to developmental disability services. for Rothman, D. J., & Rothman. S. M. adult lifeJournal of The Accociation (1984). Thr.gallgElszamms. New York: Egmaudth.Sexoraiarmlicavs, 13,177-187. Harper & Row. This study explores how parents relationships Documents events that occurred after interprettheeventsand 10 6 5 surrounding the transition of their children worldwide views, critical views, and future with severe cognitive disabilities from school work in the movement. to adult life.The authors show how Exchange of opinion on the risks and transitions are complex, socially constructed benefits of facilitated communication. (1994). processes that need to be understood in both Mental Retarcfatinn, 32, 299-318. their historical and their cultural context. A series of commentaries on the Foster, S. B. (1987). The politics of potential risks and benefits of Facilitated caring. Philadelphia: The Falmer Press. Communication (FC). The first commentary Foster studied 13 admissions to the by Levine, Shane, and Wharton is a critical Weston Center, an institution for people analysis of FC by leading opponents of FC. labeled developmentally disabled. She also This is followed by reaction papers by studied four people whose applications for Ferguson and Homer, Goode, Halle, and admission were denied. She offers discussions Hitzing, none of whom are identified with a o n institutionalization and pro or con position on this technique. Levine, &institutionalization, the limits and powers of Shane, and Wharton provide a response to the professionals, and private troubles such as reaction papers at the end.An editorial family involvement or lack of involvement. introduction provides background on this mini- Turnbull, H. R., & Turnbull, A. P. symposium. (1985). Eareats.spealuxir..._Iliczunimat Ferguson,D.L.(1994). Is Columbus, OH: Charles E. Meni 11 Publishing communication really the point?: Some Co. thoughts on communication and membership The editors offer a compilation of Mental Retardation, 32, 7-18. essays that present the perspectives of parents This article examines commtmication or relatives of people with disabilities. The interventions as one example of professional essays illustnte that having a child with a efforts to ameliorate the effects of severe disability is not invariably a burden to the disability.The author argues that the real family. This second edition offers updates point of such efforts is not so much improved from families profiled in the first edition as communication as membetship in society and well as three new essays. that attention should shift from changing behavior to insuring that membership is Contemporary Issues achieved. Kennedy, M. J. (1994). The disability Dybwad, G., & Bersani, H. Jr. (Eds.) blanket. Mental Retardation, 32, 74-76. (1996). New voices: Self-advocacy by people Written from the perspective of a with disahilitie Cambridge:Brookline petson with a disability, ICennedy discusses the Books. problems of being an individual in a service Documents the self-advocacy system that invades privacy and takes away movement through a collection of papers by choices.He argues that the people with both advocates and self-advocates. It disabilities should be allowed to be in control examines the status of self-advocates with of their own lives, to receive services when developmental disabilities and projects the and where they want them, and have future of the movement asitexpands professionals consult with them rather than worldwide.Topics include the historical answering to professionals. setting,theself-advocateexperience, Mank, D. (1995). The

6 6 underachievement of supported employment: This is an edited book sponsored the Severe A call forreinvesunent. ,lounialslimisahilizt AssociationforPersonswith policy Sructiri, 5(2), 1-24. Handicaps (TASH). The book includes TASH Despite the thousands of individuals resolutions on major policy issues confronting benefiting from supported employment, access people with severe cognitive disabilities as well to these programs is limited andinvestment in as literaturereviews and essays authored by changeislessening. Mank provides major TASH leaders. The contributions to the recommendations for change such as new book provide an excellent summary of recent alliances with people with disabilities,. investing trends and current thinking on community in community and employers, putting greater living,supportedemployment,social control into the hands of people with relationships, inclusive education, nonaversive disabilities, and rejecting the segregation of the behavioral interventions, and advocacy. current system. *O'Brien, J. (1994). Down stairs that Jacobson, J. W., Mulick, J. A., & are never your own:Supporting people with Schwartz, A. A. (1995).A history of developmental disabilities in their own homes. facilitatedcommunication: Science, McntaLiktardation, 32, 1-6. pseudoscience, and antiscience.American O'Brien discusses the recent changes in Psychologist, 50, 750-765. living for people with disabilities from group This article is must reading for anyone home residences to homes of their own. interested in understanding the controversy Meeting the challenges of supported living surroundingfacilitated communication. requires new relationships among people who Accordingtotheauthors,facilitated provide and receive supports so that people communication is an example of postmodernist with developmental disabilities can establish a trends that have challenged the supremacy of sense and securityof place and of personal psychological and clinical decision-making. control over their own homes and over the The article demonstrates why facilitated assistance they require. communication has aroused such passionate Special topic on facilitated opposition among certain professionals. communication.(1994).Journal of The with Perske, R. (1995). Deadlyinnocence2 Association for Penont for Pemonc Nashville, TN: Abingdon Press. Severe Handicaps, 19, 149-199. Perske documents the life of Joe This is an exchange of opinion between Arridy, a man labeled "feebleminded" who was leading proponents, Biklen and Duchan, and forced to confess to the rape and murder of a opponents, Shane and Green,of facilitated teenage girl. Despite little evidence, Arridy commtmication. The exchange of opinion is was convicted and executed in 1939. Perske followed by reaction papers commenting on examines the case against Arridy and the the pro and con positions. possible connections between being labeled Taylor, S. J., Bogdan, R., & Racino, J. "feeblerninded" and confessing to crimes. His A. (Eds.) (1991). Lifc_in_trisammunkx: arguments offer implications for the present Casc....studics.sit _organizarions_sullpacing day criminal justice system. pcaple_withAisaililitics. Baltimore: PaulH. Meyer, L. H., Peck, C. A., & Brown, Brookes Publishing Co. L. H. (Eds.) (1991). CriticaLissuesiathelyes The editors provide qualitative case people ofreopie with se_vere_sikihilitics. Baltimore: studies of organizations that support Paul H. Brookes Publishing Co. with disabilities in commtmity places.Topics 12

6 7 covered include organizations supporting children with severe developmental disabilities, and organizations supportingadults with developmental disabilities in theirown homes. (SteveTaylorisProfessor and Coordinatorof theDisabilityStudies Concentration in Cultural Foundations of Education and Director of the Centeron Human Policy at Syracuse University.Perri Harris is a doctoral student in theDisability Studies Concentration.Preparation of this article and annotated bibliographywas supported in part by the National Resource Center on Community Integration, whichis funded by the National Instituteon Disability and Rehabilitation Research. Ofcourse, the authors' opinions are their own.)

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2 Introduction B Y LENNARD J. DAVIS AND SIMI LINTON 4 Disability Studies: Expanding the Parameters of Diversity B Y SIMI LINTON, SUSAN MELLO, AND JOHNO'NEILL 11 (Dis)Abling Images B Y TERRY COLLINS, MARJ SCHNEIDER, ANDSUE KROEGER 15 Integrating Disability Studies into the Existing Curriculum: The Example of "Women and Literature" atHoward University BY ROSEMARIE GARLAND THOMSON 22 "Silence Is Not Without Voice": Including Deaf Culture Within Multicultural Curricula BY H. DIRKSEN L. BAUMAN AND JENNIFERDRAKE 25 A Review of Deaf Studies Curricula B Y H. DIRKSEN L. BAUMAN 27 A Review of Harlan Lane's The Mask of Benevolence:Disabling the Deaf Community B Y LENNARD J. DAVIS 30 "I Am Not One of the" and "Cripple Lullabye" B Y CHERYL MARIE WADE 32 Disability Studies Bibliography BY THE DISABILITY STUDIES PROJECT OFHUNTER COLLEGE

40 "Organize and Act": Cultural Rights in South AfricanCommunities BY ANTHONY O'BRIEN 47 Preparing Teachers to Become Agents of Change BY JUDITH S. KAUFMAN AND JANET L.MCDONALD

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much of the "new" scholarship, -C7.Z including the work done in fem- ' inist studies, cultural studies, queer studies, or racial and ethnic stud- ies, can be seen as a challenge to the no- 4. tion that biology is destiny. As a result of the elaboration on the social and muta- ble conditions of people, there are few human practices that are seen as in- evitable. There is no social institution, no cultural representation, no policy or in- teraction that is accepted as an abso- lutely logical or inevitable outcome of the human condition. And there is no cur- ricullim practice that has not been exam- ined, if only in the most cursory fashion, to understand how it might be trans- formed to render a more accurate or com- plete version of the social deierminants of experience. Disability studies, like these other "new" discourses, challenges the assump- tion that biology, or any physical or psy- chological variation, destines people to their social status. Disability studies cen- ters the study of disability on its social construction, the processes that have ac- corded particular meaning to disability and that have determined the treatment and positioning of people with disabili- ties in society. These are issues central to teaching and to curriculum, yet rarely examined. Therefore, this issue of Radi- cal Teacher is devoted to the field of dis- ability studies. It is appropriate that we devote time and space to this subject. J. Shapiro, states that the population of disabled Americans is between thirty-five and forty-three million, depending on the de- finition of disability and the source. Al- though largely relegated to the fringes PAUL STRAND. 1917 of society, people with disabilities con- stitute a significant demographic minor-impairments identify as people with dis-common social and political experience. ity and also constitute a social/political abilities. When medical defmitions of dis-Framed in this way, disability is no longer minority. In the same way that people ability are dominant it is logical to groupunderstood solely as a personal condi- from disparate circumstances are drawnpeople according to their condition.tion, but a source of identity and a mech- together, for example, under the rubricWhen disability is redefined as a social/anism to organize one's own experience, Latina/Latino, people with a vast array ofpolitical category, the group is bound byas well as a starting point for social ac-

2 NUMBER 47 f7 RADICAL TEACHER tivism. The powerful legislation passedjeopardy. Further, people with disabili-disability, one so focused on its biological over the last twenty years to accord basicties are particularly vulnerable to the im-or medical properties that the study of civil rights and equal opportunity is thepending cutbacks in social services,cultural representations and social prac- direct result of such activism. medicaid, medicare, and public educa-tices is rarely considered. It may seem These political changes and the *shift totion. The vulnerability is due as much tolike business as usual that the perspec- a socio-political model of disability cul-discrimination in housing, education, andtives of people with disabilities are not minated in the passage in 1990 of theemployment as to the specific needs ofpresent in the traditional curriculum, but Americans with Disabilities Act (ADA), a disabled people. Disability is dispropor-what is more confounding is that these major piece of civil rights legislation de-tionately represented among people liv-perspectives have been marginalized in signed to protect people against discrim-ing in poverty, women, elderly people,the discourse on diversity and pluralism. ination based on disability. The definitioninner city residents, and people in devel- For this reason, and many others, this of disability under the ADA is consistentoping countries. Attention needs to beissue of Radical Teacher examines the with the socio-political model employedpaid to the factors that contribute to thisexperiences of some teachers who have in disability studies. A person is consid-pattern as well as to the marginality, ofdeveloped courses that regard disability ered to have a disability if he/she: disability resulting from the marginalin a new light. Linton, Mello, and O'Neill nature of the groups most affected. describe the overall parameters of dis- has a physical or mental impairment If disability were more readily under-ability studies and attempt to show how that substantially limits one or more stood as a political issue, it would bethis field can apply across a broad range of his/her major life activities; taught alongside the more accepted cat-of standard courses now taught. Collins, has a record of such an impairment; egories of race, class, and gender bySchneider, and Kroeger describe their Or teachers committed to diverse perspec-experiences teaching a course at the Uni- is regarded as having such an tives. Although some recent elementary versity of Minnesota to local K--12 school impairment. school curricula have included disabilityteachers about images of people with dis- The ADA recognizes that social forces,as an aspect of diversity, disability is often abilities in literature, film, and the media.. such as myths and fears regarding dis-presented in the framework of helpingBauman and Drake tell how they in- people get along with each other, to in- crease what is called "tolerance" for Disability studies, like others. The secondary curriculum doesThe dominant ableist little beyond present human interest sto-discourse has shaped the these other "new" ries and tales of courage and fortitude, discourses, challenges°the described in the disability community asway disability is described, assumption that biology, tales of "overcoming." A more radicaliz-obscuring the political ing curriculum is needed. or any physical or The higher education curriculum hasreasons for the group's psychological variation, not done any better. Traditionally, themarginality. study of disability has been isolated in the destines people to their specialized applied fields (e.g., special ed- social status. ucation, rehabilitation psychology, healtheluded a section on deafness in a course care) and information there, usually avail-on multicultural literature, and Thomson able only to majors in those fields, is con-relates her experience of teaching about ability, function to substantially limitcerned with remediation, treatment, care, disability in a women's literature course opportunity. The last two parts of this de-and cure. Further, that curriculum hasat a historically black university. An ex- finition acknowledge that even in the ab-been developed from the perspectives oftensive bibliography contains relevant sence of an impairment, people can bethe clinician, teacher, or practitioner andworks on disability studies, and Bauman discriminated against. For instance, thisperpetually casts people with disabilitiespresents a review of books on deafness may occur because someone has a facialin the role of patient, student, or client.that can be used as texts in literature disfigurement or has, or is suspected ofDisability studies offers an alternativecourses. While these articles do not begin having, HIV or mental illness. framework, one focused on social and po-to address all the issues in the field, the Yet, the discrimination and oppressionlitical variables that shape these roleseditors hope that they open a window that disabled people experience areand their interactions. onto a subject which is slowly entering largely hidden from the eyes of most The dilemma for disability studiesthe broader public consciousness and people. The dominant ableist discoursescholars has not been in documenting theeven more slowly entering the academy.2 social construction of disability; it has has shaped the way disability is de- NOTES scribed, obscuring the political reasonsbeen in negotiating obstacles encoun- 'J. Shapiro, No Pity: People with Disabil- for the group's marginality. The left, per-tered when attempting to relocate andities Forging a New Civil Rights Movement haps most egregiously because of itsreframe the study of disability in the aca-(New York: Times Books/Random House, commitment to equality and diVersity,demic curriculum. Efforts to locate the 1993). has not actively engaged with disabilitystudy of disability in the liberal arts are 2For a list of Disability Resources, see issues. Political solidarity is needed nowthwarted, in part, because the academyNews for Educational Workers in this when many rights and freedoms are inis entrenched in a particular vision ofissue. 0 NUMBER 47 RADICAL TEACHER 3 Disability. Studies: Expanding the Parameters of Diversity BY SIMI LINTON, SUSAN MELLO, AND JOHN O'NEILL

ENTER DISABILITY STUDIES with many of the new interdisci- plinary fields, creating the cate- Asgory "disability studies" didn't create the scholarship. Instead, the name organizes and circumscribes a knowledge base that explains the social and political nature of the ascribed category, disabil- ity. The formal establishment of the field some fifteen years ago provided an orga- nizing structure for research and theory across the disciplines focused on disabil- ity as a social phenomenon, a perspective largely ignored or misrepresented in the curriculum. The Society for Disabil- ity Studies is the home base for the field and journals, such as Disability Studies Quarterly and Disability and Society (pub- lished in England), the most likely venues for work in this area. These are largely unknown to the academic community. The group that wrote this article are founders of the Disability Studies Pro- ject, a curriculum development project we began at Hunter College to acquaint faculty with the field and to lobby for its inclusion in the diversity initiative that had been proposed at the College a few years ago. A diversity requirement was proposed for undergraduate studentstit despite concerted effort on the authorit- parts and efforts of others at the College, the proposed requirement did not in- clude the category of disability studies as one of the areas of underrepresented scholarship that students could choose from in fulfilling part of their require- ment. The people opposing its inclusion were for the most part those who were in favor of the initiativein other words,WOOdCUt of a blind beggar, from "Werner Rolewinck, Fasciculus people like Radical Teacher readers temporum." (Strassburg, Johann Prins, not before 1490.) those committed to exposing students to a more, representative version,of thehope that they would find disability stud- can use the material in your work. We world. This article and the bibliographyies a challenge to the accuracy and com-also hope that it stimulates readers to that follows were developed at the Pro-prehensiveness of their curricula. Weevaluate their own formulations of the ject, and an earlier version of these werewelcome this opportunity to present itconstruct "disability," not to mention distributed to faculty at Hunter with the in Radical Teacher and hope that you"multiculturalism." 4 RADICAL TEACHER NUMBER 47 DISABILITY STUDIES: AN OVERVIEW and disabled people, reinforced becauseof people with disabilities. We have orga- The social, political, and cultural"the dominant group defines itself as nor-nized information below into modules that analyses embodied in disability studiesmative" (p. 238). can fit in a range of courses and can serve form a prism through which one can gain Disability studies challenges the ideaas an introduction to disabilitystudies. a broader understanding of society andthat the social and economic status andWe hope, of course, that you go beyond human experience, and the significanceassigned roles of people with disabilitiesthe "add and stir" method of curriculum of human variation. As Longmore (1992,are inevitable outcomes of their condi-transformation and continue to mine the personal communication) points out, dis-tion, an idea similar to the argument thatinformation in this issue for ideas that ability studies deepens the "historicalwomen's roles and status are biologicallycan have a more transformativeeffect comprehension of a broad range of sub-determined. But disability studies goeson your work. jects, for instance the history of valuesbeyond cataloguing discrimination and EXAMPLES OF THE SCHOLARSHIP and beliefs regarding human nature,arguing for social change. It challenges Disability studies captures and orga- gender, and sexuality; American notionsthe adequacy of the content and struc-nizes works from seemingly disparate of individualism and equality, and theture of the current curriculum. As withareas. It offers insight into the social social and legal definition of what consti-women's studies, disability studies re-arrangements constructed around the tutes a minority group." dresses omitted histories, ideas, or bod-configuration of the world into disabled A disability studies perspective adds aies of literature and also analyzes theand non-disabled, and examines the ideas critical dimension to thinking about is-construction of the category "disability,"and beliefs that maintain that bifurca- sues such as autonomy, competence,the impact of that construction on soci-tion. Material available comes primarily wholeness, independence/dependence,ety, and on the content and structure offrom the United States, Britain, and Aus- health, physical appearance, aesthetics,knowledgefundamental epistemologi-tralia, with some recent additions from community, and notions of progress andcal issues. Africa and Asia. The field both emanates perfection. These issues pervade every Unfortunately, both the structure andfrom and supports the disability rights aspect of the civic and pedagogic culture.the content of the traditional curriculummovement, which advocates for civil They appear as themes in literature, asare problematic with respect to disability.rights and self-determination based on a variables in social and biological science,The current structure of the curriculumminority group model. The field is a form as dimensions of historical analysis, andnot only isolates the topic of disability inof cultural studies, but one clearly iden- as criteria for social policy and practice.applied fields, but further segregates it in tified with a political movement. Scholarship in this field addresses suchspecialized applied fields (e,g., special The following material from the field fundamental ideas as who is considered aeducation, rehabilitation medicine, coun-of disability studies is organized into six burden and who is a resource, who is ex-seling and psychology, physical therapy).modules that can be integrated in a wide pendable and who is esteemed, who shouldThe academy's role in supporting these range of courses. But these offerings only engage in the activities that might lead tospecialized areas of study is to graduatescratch the surface of the wealth of ma- reproduction and who should not, and, ifmajors to staff the kinds of civic institu-terial available and hint at the possibili- reproduction is not the aim, who can en-tions that provide remediation and treat-ties of the field to transform curricula. gage in erotic pleasures and who shouldment services to people with disabilities. not. Looking at these issues from a dis-Although there is a need for intervention METAPHOR ability studies perspective puts into re-and treatment, and a need for curricula Metaphors endure in a culture be- lief patterns of behaviors and policy thatto prepare professionals in these fields,cause they are evocative and persuasive have significant consequences for dis-this approach does not provide a liberalways of explaining something and orga- abled people. arts education. nizing the way we think. Their power and Within most academic curricula, the The specialized applied fields concep-utility are dependent on shared beliefs meaning accorded to disability is that it tualize disability as a problem that resides and assumptions. Women and men with is a personal medical condition, ratherin the individual requiring remediation,disabilities, and disabilities themselves, than a social issue; an individual plight,treatment, or intervention to amend orare used as metaphors in countless texts. rather than a political one. This state ofcompensate for what is perceived asIn Illness as Metaphor, Susan Sontag affairs is remarkably similar to the tra-wrong, missing, or dysfunctional. This(1978) attempts to separate the essential ditional representations of women, de-way of viewing disability is sometimesfrom the nonessential aspects of illness scribed by Carol Tavris (1992) in The Mis-referred to as the deficit model or med-and, by inference, disability. Her purpose measure of Woman. Her book describesical model. The liberal arts curriculum is to liberate our thinking from the "puni- the way traditional research has ofteneither represents people with disabilitiestive or sentimental fantasies concocted measured women against some idealizedas deviant or abnormal or, more often, ig- about illness" (p. 3). Kriegel (1982), in a male norm and attempts to explain be-nores the topic. discussion of Sontag's work, notes that havioral differences in terms of per- Incorporated into the liberal arts cur-"disease has become so all-embracing a ceived biological or psychological differ- riculum, disability studies has the poten-metaphor that its actual physical conse- ences, rather than differences in powertial to organize and critique representa-quences have been swallowed up by the and circumstance. Thomson (1990), in dis-tions of disability, expose ways thatwelter of moralistic judgments it calls cussing the position of people with dis-disability has been constructed as label forth" (p. 17). abilities in society, reminds us of theand category, and reveal the consequences Disability metaphors abound in fiction. power differential between non-disabledof those actions for the lived experienceThomson (1990) faults literary criticism NUMBER 47 RADICAL TEACHER 5 for ignoring the social and political as-lightenment, and any number of otheroutside the industrialized world were ei- pects of disability and treating "the rep-substitutions for the lived experience ofther killed at birth or died when young" resentation of disability under the rubricwomen and men with disabilities. (p. 24). Although these practices did and of 'the grotesque'." This " invites treating Courses in literature, literary criti-continue to occur, there is tremendous disability as monstrosity and alien oth-cism, rhetoric, or philosophy can investi-variation in the practices and in the value erness, dehumanizing us, erasing our his-gate these metaphors and other devicessystems that determine them. They note tories, and appropriating our experi-that seem appealing because they effec-how scholars in the United States tend to ences for aesthetic purposes" (p. 238). tively evoke feelings or images that manyglorify the modern industrialized na- We were struck by an example of this are thought to share. Not only do suchtions' treatment of people with disabili- guilt by association in a passage that ap-figures of speech further objectify andties and that tendency shapes interpre- pears in the front of Elizabeth Kamarckalienate people with disabilities, theytations of data. For instance, they quote Minnich's excellent book on curriculumperpetuate stereotypes. Birdsell (1972) from a standard textbook transformation, Transforming Knowl- on biological anthropology: "Biologically edge (1990). The book presents a frame- II SOCIAL ARRANGEMENTS: handicapped children are a humanistic work for understanding the limitations THEIR EARLIEST BEGINNINGS AND concern in our society whereas in simple of the traditional curriculum and pre- CURRENT INTERPRETATIONS human populations they died early and scriptions for transformation. Ironically, - To examine variability in social ar-were not missed" (p.384). Scheer and in an effort to demonstrate the impor-rangements of people with disabilities, itGroce argue for analysis of the social tance of representing women's voices,is best to start at the beginning. Rink-construction of disability within a given Minnich chose an opening epigraph that haus and Shipman (1993) describe the fos-society, as well as analysis of the recon- reduces the representation of a man withsil remains of a Neanderthal male who isstruction that takes place in scholarship a disability to a metaphor for inadequacy.believed to have sustained serious in-as meaning is accorded to data collected The quote is from Anna Julia Cooper's Ajuries which resulted in impaired mobil-about that society. Voice From the South, written over oneity, partial blindness, and the use of only Nichols also comments on the misin- hundred years agoin 1892. one arm. He lived for thirty to forty-fiveterpretations of traditional societies that _s It is not the intelligentwoman vs. years, a long life span. The authors com-exist in contemporary scholarship. His the ignorant womannor the white ment that his survival was a result of the study of traditional African attitudes woman vs. the black, the brown, and_ "compassion" and "humanity" of the Ne-toward disability is in response to the anderthals. Stephen Jay Gould (1988) de-"observable tendency to reduce African the..red, it is not even the causeof, woman vs. man. Nay, 'tis woman's scribes an individual from the Upper Pa-ideas about disability to a few hackneyed strongest vindicatiOn for speaking leolithic period whose remains indicatescenarios whereby disability is seen ei- that the world needs to hearher physical disabilities (a form of dwarfismther as a result of witchcraft.. . or as a resulting in limited mobility) that would voice... The world has had to limp form of divine retribution" (p. 26). He alorig with the wobbling gait andthe have restricted his participation in thenotes that modern industrialized soci- one=sided hesitancy of a man with hunting and gathering activities, and theeties tend to dismiss African ideas as one eye. Suddenly the bandage is re- nomadic life of his group. The man was"barbaric" or "primitive." Instead, he moved from the other eye and the buried in a cave that appeared to be adifferentiates between African belief whole body is filled with light. Itsees burial site for people of high status.systems based on "pragmatic spiritual- a circle where before it saw a seg- Gould speculates that his social standingity that reflects knowledge and utility, ment. The darkened eye restored, may have afforded him this honor, orand blind superstition whichisin every member rejoices with' it. that his differences were valued, or thatbondage to ignorance" (emphasis added "his deeds or intelligence won respectby Nichols) (p. 29), in order to demon- This is certainly an evocative quote.despite his physical handicaps" (p. 18). strate the human and humane ideas that Yet, the utility of the passage is dependentThe paleontological evidence as well asinform many African approaches to dis- on the belief that someone with the use ofthe contemporary interpretations areability. Courses in history, anthropology, one eye perceives only a segment of thevaluable reminders of the variation in re-ethics, biology, physical anthropology, world, is unsteady, is hesitant, and func-sponse to disability. African studies, paleontology, or cultural tions in a body filled with darkness. The Scheer and Groce (1988) also review in- studies might examine any one of these parallels drawn between silenced womenformation on prehistoric life and critiquetopics from an informed disability per- and disabled man, and then betweenthe narrow and stereotypical interpreta-spective. These courses could provide women .given a voice and a man who is tions of the evidence in contemporary lit-useful perspectives on the ways that re- "cured" appear to be as meaningful todayerature. They note that in prehistoric so-searchers' ideas can color the collection as they were in 1892. The dilemma nowcieties, people with disabilities existed inand interpretation of data and show how for those who advocate curricular trans-greater numbers than current evidencedisability is subject to misinterpretation. formation is to find ways to give the one-would suggest. They compare interpreta- III eyed man a realistic voice. If he remains tions of that data with interpretations of NINETEENTH- AND TWENTIETH-CENTURY a metaphor, his experience is defined the situation of people with disabilities in BELIEF SYSTEMS only by implied comparison to unsteadi-contemporary nonindustrialized societies. Courses in social history, American or ness, darkness, limited vision, sadness,They refute some commonly held as-European history, the social foundations ineptness, the absence of light and en-sumptions that "disabled individuals born of education, or religion might trace 6 7 6 RADICAL TEACHER NUMBER 47 variations in beliefs about disabilityof individuals. The diagnosis and labelconsidered retarded, as well as other in- across a particular time period, such asbecome the major defining variable offants with physical anomalies, become the nineteenth to mid-twentieth centurylearners, and pedagogical practice ispart of one group, considered undesir- in the United States and Europe. Long-largely determined by these designa-able and more animal-like than human. more (1987) discusses beliefs about dis- tions (Linton 1994). Disability, specifically deafness, was ability that were dominant prior to the In a variety of courses, this materialconstructed very differently in Martha's nineteenth century. It was believed that can be examined as a means to trace theVineyard, Massachusetts from the eigh- disability was caused by supernaturalshifts in policies and practices through-teenth to mid-twentieth centuries. For agency. Often people with disabilitiesout history. Ideas ranging from ancientover two and half centuries, ending in were thought of as possessed by thephilosophies to current belief systems1952, there was a higher incidence of devil, punished by god for their sins or can be mined. It would be particularly in-hereditary deafness than in the rest of their parents' sins, or, alternately, blessed teresting to examine ideologies popularthe United States. There were approxi- by god and possessed of supernaturalin America in the nineteenth and earlymately 72 people who lived in Martha's powers. , The practices that emergedtwentieth century, such as Malthusian-Vineyard in those years who were deaf, from these beliefs ranged from punish-ism, social Darwinism, the science of eu-approximately one in every 155 people ment, isolation, infanticide, or ridicule togenics, and laissez-faire approaches toborn. Although a very small percentage overprotection and deification. The lat-government to understand their influ-of the population was deaf, the commu- ter, although preferable in some ways,ence on the accommodation of peoplenity was largely bilingual. As one of the offered people with disabilities little con-with disabilities in the society. Thesesurviving hearing members of the com- trol or opportunity. ideas certainly influenced nineteenth-munity recalls, everyone spoke sign lan- In the nineteenth century, there was acentury practices with respect to dis-guage and the hearing citizens also used shift from the belief that disability wasability and the vestiges of these ideasspoken English. In Groce's (1985) ethno- caused by supernatural agency to a bio-persist today. history of Martha's Vineyard, Everyone Iv SOCIAL CONSTRUCTION Faculty in various disciplines try to ex- plain social construction to students. The idea that disability is a construct is par- ticularly difficult to understand and therefore it is a useful and challenging test case. Students in one of the author's classes (Linton's Social and Psychologi- cal Aspects of Disability) have made .0,347.1. some very useful connections among var- ious forms of social construction when we have discussed some of the following Nineteenth-century "hollow Noncooperative patients tied in a examples of variation in different soci- eties' treatments of groups we currentlywheel" used in asylums to bring saltwater tub and punished with the obstreperous to obedience. a hosing in nineteenth-century call "disabled." Germany. Two examples are provided here to demonstrate cultural responses to dis-Here Spoke Sign Language, she demon- ability that are likely to differ from most strates how this community located peo- logical explanation that viewed treat-students' own experience. Nichols (1993),ple with disabilities as insiders, not the ment, or some form of rehabilitation, asin a discussion of various African cul-"other," by accommodating the customs the only logical response to disabilitytures' beliefs about disability, describes to insure integration of all people in the (Longmore 1987). This shift marked thethe concept of Ebih, which refers tocommunity. The people who were deaf birth of an enormous "care" industry"aberrations which violate the naturalparticipated fully in the economic and and along with it a variety of institutionsorder of things" (p. 32). He notes that "insocial life of the Vineyard. It is likely that and asylums. the past among the Igbo and some other they lived more like non-deaf people than The field of education developed itsgroups infanticide sometimes occurreddeaf people did in any other community own response to the biological explana-following the birth of twins" becausein the United States. tion of disability. The birth of special edu-multiple births are associated with ani- These examples show the variability cation was based on a humane belief inmals. Infants believed to have mental re-and arbitrariness of the division between the right of all children to an educationtardation as well as twins were "throwndisabled and non-disabled people. There and an optimism about people with dis-away" in the bush because they wereis not an absolute and inevitable way of abilities not present in supernatural ex-considered to be animal-like. These areorganizing the world. In one case, twins, planations. Even though special &Ideationpractices that were frequently used ina group not stigmatized or disenfran- doesn't rely solely on medical diagnoses, the past, but are no longer actively prac-chised in most cultures, were systemati- the field by definition forefronts the phys-ticed. The point, though, is that by shift-cally eliminated in the same manner as ical, cognitive, and sensory impairmentsing time and location, twins and infantspeople with significant retardation. In the NUMBER 47 RADICAL TEACHER 7 7 7 (Dis)Abling Images BY TERRY COLLINS, MARJ SCHNEIDER, ANDSUE KROEGER

Since 1993, we have been creating, revising, and teaching "(Dis)Abling Images in Literature, Film, and the Media': at the University of Minnesota- Twin Cities. Offered through the Pro- gram in American Studies, the course is part of a summer institute immersion ex- perience on diversity and curriculum transformation. As such, the course at- tracts local K-12 school teachers and spe- cial education teachers. One of few "dis- ability studies" courses on our campus, it likewise attracts disabled undergraduate and graduate students and activists seek- ing in their coursework some structure for serious study of disability identity -,-V4 and culture. "(Dis)Abling Images in Literature, a-4f t.: Film, 4nd the Media" springs from our shared understanding that Ameiican cul- tures and sub-cultures are not sealed f.3 v from each other but, to the contrary, 'ph.""v11 form each other interactively. We chose analysis of images from the popular media of film, television, and literature be- as the course's intellectual center 111/4 ct,k, cause we locate in those images signifi- 7.1 cant defining power: through literary and electronic media images are defined the f terms of "normalcy" and "disability," of center and margin, of power and power- 4 " lessness. We focus on these fainiliar im- ages because the culture is shaped in its ideology of disability through such signs. c.9a That is, the course assumes that movies, television programs, and imagi- native literature tell us and our students who we are and how we are. In their re- curring themes, these media serve to sus- tain endless consumption in the pursuit / of bodily perfection. So charted, these media name people with disabilities as otherirrevocably flawed, useless, de- pendent, sexless, evil. From Quasimodo "' , to Jerry's Kids, from Tiny Tim to Freddie

Krueger, the images manufacture,. (the I more current "construct" seems too pa lite, too clean) disability as deviance from likir4; perfectibility, and people with disabili- ties as deviants or victims or ciphers, as"Tis dark without, light within." (c 1855 -SO) NUMBER 47 RADICAL TEACHER 11 recognition of students with disabilitiesprivilege certain points of view and bod-Hahn, H. "Theories and Values: Ethics and as members of an underrepresented mi-ies of knowledge? How does the structure Contrasting Perspectives on Disabil- nority group, are not addressed. of the multicultural curriculum privilege ity." in The Psychological and Social A fourth obstacle has been revealed as certain points of view and bodies of Impact of Disability. 3rd ed. Ed. R. P. groups at various institutions have triedknowledge? How does the structure of Marinelli and A. E. Dell Orto. New to broaden the definition of diversity. Forthe disciplines constrain our explorations York: Springer, 1991. example, attempts to include lesbian andof new epistemologies that can enhance Hubbard, R. The Politics of Women's Biol- ogy. New Brunswick: Rutgers UP, 1990. gay studies or disability studies in cur-understanding of the social and political riculum transformation efforts have been Keller, E. F. Reflections on Gender and situation of people with disabilities and Science. New Haven: Yale UP, 1985. welcomed by some, and criticized byother disenfranchised groups? others. Ironically, some of the critics are Kriegel, L. "The Wolf in the Pit in the Engaging these questions can provide Zoo." Social Policy 13.2 (1982): 16-23. those who are the strongest proponents a more open forum to discuss how dis-Lifton, R. J. The Nazi Doctors: Medical of diversifying the curriculum. However,ability studies can be incorporated in cur- Killing and the Psychology of Genocide. their conceptualization of diversity doesriculum reform efforts. Whatever the New York: Basic Books, 1986. not include disability. What is even morereasons, diversity/multicultural initia- Linton, S. "Reshaping Disability in Teacher disturbing is that the criticisms previ-tives have formed their own shape and Education and Beyond." Teaching Edu- ously heard from proponents of the tra-texture and render their own authority. cation 6.2 (1994): 9-20. ditional canon are now being used againstTherefore, the knowledge these initia-Longmore, P. "Uncovering the Hidden the inclusion of disability in curriculumtives privilege and the knowledge they History of People with Disabilities." transformation efforts. The followingmarginalize warrant consideration, par- Reviews in American History Septem- have been said to one or another of theticularly from the perspectives of the ber 1987: 357-364. authors in meetings or at conferences onmargins. The perspective of disabled peo-Minnich, E. K. Transforming Knowledge. diversifying curricula: "scholarship onple and the field of disability studies are Philadelphia: Temple UP, 1990. disability will 'water down' the diversity conspicuously absent from a broad rangeNichols, R. W. "An Examination of Some Traditional African Attitudes Towards requirement"; "its purpose is to increaseof endeavors. The decisions that have de- self-esteem, or capitulate to interest group Disability." Raditional and Changing termined their absence are for the most Views of Disability in Developing Soci- pressure"; "it's not valid or rigorous schol- part invisible, giving the impression that eties: Causes, Consequences, Cautions. arship"; "it's parochial, and will furtherthese curriculum projects circumscribe Monograph #53 of the International Ex- atomize the curriculum." the only logical domain of curriculum re- change of Experts and Information in Were these criticisms framed as ques-form. One hopes that readers of Radical Rehabilitation., 1993 tions to be engaged with, the academicTeacher will be among those opening upSacks, 0. Seeing Voices: A Journey Into community would benefit from the dis-discussions on this state of affairs and the World of the Deaf. Berkeley: Uni- course. Why, for instance, is scholarshipreconsidering how to construct accurate versity of California Press, 1989. on disability not considered rigorous,and comprehensive curricula. Sacks, 0. "A Neurologist's Notebook: lb See and Not See." New Yorker 10 May and therefore likely to dilute or compro- WORKS CITED 1992: 85-94. mise the curriculum or diversity initia-Birdsell, J. D. Human Evolution: An Intro- tives? Has the association of the topic of duction to the New Physical Anthropol- Scheer, J. and N. Groce. "Impairment as a disability with the applied fields weak- ogy. Chicago: Rand McNally, 1972. Human Constant: Cross-cultural Per- ened its status and its perceived applica- Bogdan, R. Freak Show: Presenting spectives on Variation." Journal of bility to other areas of inquiry? Is dis- Human Oddities For Amusement and Social Issues 44.1 (1988): 23-37. ability studies considered only for the Profit. Chicago: Chicago UP, 1988. Sontag, S. Illness as Metaphor. New York: purpose of raising self-esteem because Elks, M. A. "The Lethal Chamber': Fur- Farrar, Straus and Giroux, 1978. people with disabilities are perceived as ther Evidence for the Euthanasia Op- Tavris, C. The Mismeasure of Woman. New York: Simon and Schuster, 1992. needing a boost? Is disability studies any tion." Mental Retardation 3.4 (1993): 201-207. Thomson, R. G. "Speaking About the more, or any less, related to political con- Fiedler, L. Freaks. New York: Simon & Unspeakable: The Representation of siderations or identity formation than Schuster, 1978. Disability as Stigma in Toni Morrison's any other area of inquiry? Are concerns Gallagher, H. G. By Rust Betrayed: Pa- Novels." Courage and Tools: The about a parochial, narrow, balkanized tients, Physicians, and the License to Florence Howe Award For Feminist curriculum based on the view that the Kill in the Third Reich. New York: Scholarship 1974-1989. New York: study of disability is about "them" and Henry Holt, 1989. Modern Language Association, 1990. says nothing about social, political, and Gilman, S. Difference and Pathology: Ilinkhaus, E. and P. Shipman. The Nean- cultural processes that the whole society Stereotypes of Sexuality, Race and derthals: Changing the Image of engages in? Madness. Ithaca: Cornell uP, 1985. Mankind. New York: Knopf, 1993. These questions about disability stud- Gould, S. J. The Mismeasure of Man. New Wolfensberger, W. The Principle of Nor- ies relate to broader questions about cur- York: W. W. Norton, 1981. malization in Human Services. Toronto: ricular reform efforts in general. For in-Gould, S. J. "Honorable Men and Women." National Institute on Mental Retarda- Natural History March 1988: 16-20. stance, how can we redress problems in tion, 1972. Groce, N. Everyone Here Spoke Sign Wolfensberger, W. "The Extermination of the structure as well as the content of the Language: Hereditary Deafness on Handicapped People in World War II curriculum in reform efforts? How do the Martha's Vineyard. Cambridge: Germany." Mental Retardation 19.1 structure and status of the disciplines Harvard uP, 1985. (1981): 15-17. 0 10 7 9 RADICAL TEACHER NUMBER 47 they or friends have had with medicalplayed for prOfit, people with disabilitiesnorm, McClintock believes thatdiffer- professionals who, they report, pushedwere denied basic rights and freedoms. ence is "evidence not of lawlessness or them in covert and overt ways to have Courses in women's studies, history ofdisorder, but of a larger system of order, testing. The students often conclude thatscience, sociology/anthropology of medi-one that cannot be reduced to asingle a pregnant woman should have 4he op-cine, public policy, ethics, genetics, biol-law." McClintock's approach offers a way portunity to learn more about the dis-ogy, and philosophy can review this his-to think about the bifurcations thatexist ability that a child might have, and abouttory from a disability studies perspective.in the social arena based on characteris- the opportunities and resources avail-Students preparing for careers in medi-tics labeled disabilities. The approach can able for the family and the child. Womencine or other health related fields shouldinform the discussion on ethical issues need support when they choose not toengage in critical examination of the his-related to eliminating difference. For in- have testing or choose to proceed with atory of their practice. Although ideallystance, the pursuit of certain notions of pregnancy if disability is a possibility Asthat analysis should take place bothperfection are demonstrated in efforts to Hubbard (1990) states in The Politics ofwithin the liberal arts undergirding of"repair" the individual with a disability or Women's Biology: their education as well as in their train-eliminate people with impairments from 2 ing, in reality the internal critique of thethe population through the use of prena- a woman must have the right to ter- applied fields is limited. The presence oftal screening and selective abortion. minate a pregnancy whatever her disability studies in the liberal arts is the These are examples that can be in- reasons, but she must also feel em- only likely way that students would havecluded in a range of courses. Readings powered not to terminate it,- confi- access to critical inquiry. can be drawn from the "DisabilityStud- dent that the society will do what it ies Project Bibliography," which is in- VI can to enable her and her child to cluded in this issue. live fulfilling lives. To the extent THE SCIENCES' CONSTRUCTIONS OF DISABILITY OBSTACLES TO INCORPORATING that prenatal interventions imple- Disability studies scholarship exam- DISABILITY STUDIES IN THE CURRICULUM ment social prejudices against peo- ines the processes by which individuals Despite the efforts of a number of peo- ple with disabilities they do not ex- are marginalized in the society based onple on campuses across the United States pand our reproductive rights. They physical, cognitive, psychological, or sen- and at institutions in Australia and Eng- contrict them. (pp. 197-98) sory variations. The sciences contributeland, disability studies has not received Other measures to limit the populationto the decisions about what is valued andmuch attention in the academic commu- of people with disabilities are part of thewho or what is expendable. These disci-nity There are various reasons for this historK-of medical practice. Elks (1993) ,plines have created the tools to designatesituation. Certainly, the extraordinarily notes the horrible conditions of custodialwhat is normal and acceptable and theylow representation of people with dis- institutions, including overcrowding, poorhave the tools to challenge the power andabilities in academic settings is an im- sanitation, and meager food rations. Deathauthority of those designations. Women'sportant impediment. Whether those indi- from tuberculosis and pulmonary and in-studies scholarship has examined criti-viduals would serve as reminders or fectious disease accounted for over sixty-cally the mantle of neutrality in whichactively remind the community of the in- five percent of deaths between 1901 andthe sciences wrap themselves, and dis-completeness of the knowledge we im- 1925 in those institutions. This history isability studies has done the same. Thepart to students, their absence lessens rarely discussed in the applied fields,paradigms and constructs employed inthe chance for change. which tend to underscore the humanescientific theory as well as the methods A second obstacle to the incorporation and benevolent accomplishments of theof investigation are fertile regions to beof disability studies in the curriculum is medical fields. explored. Often ideas can function on athe assumption that disability is already Medical practices share a peculiar bor-subtle level, within an overall structurewell represented and in its rightful der with such social institutions'and ritu-that gives the appearance of universalityplacein the specialized applied fields. als as freak shows and carnivals. Fiedlerand comprehensiveness. However, as we have noted, a disability (1978) in Freaks and Bogdan (1988) in his Scholars such as Evelyn Fox Kellerstudies perspective is not present in the book Freak Show: Presenting Humanhave examined such subtle phenomena inliberal arts or even in the specialized Oddities For Amusement and Profit de-writing about the social construction offields. scribe how people have been put on publicscience. Although such scholars may not A third obstacle is the unspoken belief display in circuses and other more sedatehave intended to reveal anything aboutthat the university's only responsibility institutions, such as museums and med-the construction of disability, they have.in this area is to provide services for stu- ical facilities. A man described as theFor instance in her book, Reflections ondents with disabilities. It is not surprising "Elephant Man" and a woman called theGender and Science (1985), Keller dis-that the university conceives of its oblig- "Hottentot Venus" were displayed in med- cusses geneticist Barbara McClintock'sation primarily in these terms. The cur-. ical and scientific settings, as well as inperspective on how to conduct scientificrent curriculum supports a helping ori- commercial venues. People have workedresearch, which is one that, as she de-entation and the university has adopted in these areas out of economic necessityscribes, "pays special attention to the ex-the logic of the curriculum. Other agen- or because they were under the "care" ofceptional case" and entails a respect fordas, such as curricular reform, affirma- medical personnel and had little oppor-individual difference and complexity.tive action efforts to ensure representa- tunity to pursue other goals. Either asRather than dismiss as aberrant mem-tion of people with disabilities on the scientific specimens or amusements dis-bers of a species that stray from thefaculty and in the administration, and the NUMBER 47 RADICAL TEACHER 8 0 9 Martha's Vineyard example, the demar-are discussed in Gilman's work and themake-up of the population has fostered cation that usually exists between hear-writing of Thomas Szasz, R.D. Laing,overt and covert eugenics practices, in- ing and deaf people was erased. Michel Foucault, Erving Goffman, Mar- cluding various means of controlling re- V garet Mead, and even Alexander Solzhen- productive rights or socially sanctioned THE MEDICALIZATION AND itsyn (in The Gulag Archipelago). Eachpractices to eliminate undesirables from PATHOLOGIZING OF DIFFERENCE analyzes the manner in which pathologythe population. The eugenic movement The medicalization of disability, thehas been constructed to serve social endsthat informed Nazi Germany's practice appropriation of the category by theand the ways that medical and other in-of genocide of people with disabilities has medical profession, has had various con-stitutions have gained control over peo- been reported in Lifton's (1986) The Nazi sequences for people with disabilities.ple through labeling and institutionaliza-Doctors: Medical Killing and the Psy- Medical explanations of disability re-tion. This history is analogous to the waychology of Genocide and in Gallagher's placed, to a degree, supernatural expla-women's autonomy has been constrained (1989) By 'Must Betrayed: Patients, Physi- nations that were dominant in Europe"for their own good," and women's ef-cians and the License to Kill in the Third and the United States prior to the nine-forts to buck authority and demand theirReich. Other writers have compared these teenth century. The identification of dis-rights have been interpreted as medical/practices to more seemingly enlightened ability as a medical condition has af-psychiatric problems to be controlled. practices in England and the United States. forded many people with disabilities The higher education curriculumHubbard (1990)in a chapter titled "Who significant comforts and health. How-strengthens the control that the rehabili-should inhabit the world?"compares ever, along with those benefits there hastation/medical industry and the specialBritish and American practices and ideas been a loss of freedom and of rights. education system have over disabled peo- during a similar period, such as the prac- Medical, educational, and social ser-ple. The curriculum has been designed totice of forced sterilization of those con- vice personnel have wielded enormousprepare service providers and educators. sidered unfit for society. Elks (1993) traces power over people with disabilities usingIndeed, the needs of the market supportthe historical acceptance of euthenic the tools of diagnosis, labeling, treat- practices that, if implemented, would ment, and institutionalization. It is often sanction the extermination of people with difficult to explain what is wrong withThe social, political, and mental retardation. The use of the "lethal this arrangement. The seemingly benev-cultural analyses embodied chamber" option was supported by lead- olent impulses that drive these practices ers in the field of mental retardation in belie the paternalism and control thesein disability studies form a the United States before it was applied in tools serve. The arrangement privilegesprism through which one Nazi Germany. Wolfensberger (1981) dis- the medical definitions of people's lives cusses the implications of the Nazi policy over the social and political definitions. can gain a broader of extermination and euthanasia for cur- The solution to the "problem" of disabil-understanding of society rent thinking in the United States about ity is seen as residing in the resources prenatal screening to determine the sta- and facilities of the medical establish-and human experience, tus of the fetus and the growing accep- ment, rather than in legislative bodiesand the signifIcance of tance of the practice of selective abortion and social institutions. The arrangementhuman variation. when disability is predicted. There are buys into the assumption that people with obvious differences between Nazi prac- disabilities are more concerned with cures tices and current practices in the United than rights, are more plagued with theirthe logic of a curriculum on disabilityStates. The similarities, however, are less condition than with discrimination. It alsoisolated in the applied fields. One of theobvious and certainly less discussed. assumes that all human variations labeledmajor struggles that disability studiesAuthors who have located disability more "disabilities" require a medical definition.scholars face is wresting control of thecentrally in the discourse point out the Further compounding of the problemrepresentation of disability from thesedangers of accepting a eugenics approach occurs when medical labels are used to specialists. Disability studies lies outside to the use of prenatal diagnosis as a means designate certain characteristics as patho-these fields and critiques their orientationof controlling the variation of character- logical, or groups as mad or dangerous.toward intervention and cure and theiristics within the population. Sander Gilman (1985) in Difference and reliance on deficit models of disability. When using these examples in class, it Pathology: Stereotypes of Sexuality, Race, An examination of medical history is important to note that raising concerns and Madness discusses the "conflation ofthrough the lens of disability studiesabout the ways pre-natal screening and concepts" (p. 71) that occurs when, for in-reveals other ways medicine has had selective abortion are used and promoted stance, women or African-Americans aretremendous control over people with dis-is not to support an anti-choice position. linked with pathology. The conflation ofabilities. For instance, in addition to at-When one of the authors, Simi Linton, disability and pathology seems so in-tempts to minimize suffering and maxi-discusses this topic with graduate stu- evitable that it is hard to disentangle themize functioning, some members of thedents in counseling we focus on the cli- two. Pathology itself is a huge construct,scientific community have attempted tomate in which decisions are made about difficult to strip down to its essential andmake the human race more "perfect" bypre-natal screening and abortion, not on useful elements. The non-essential ele-eliminating people with undesirable char- the right of a woman to make an in- ments, the encumbrances, the imposedacteristics from the population. The be-formed choicewhatever the outcome. meanings and inconstant social practiceslief that disability weakens the geneticStudents often comment on experiences a NUMBER 47 81 RADICAL TEACHER damned, pitiable, absent, or invisible. Learned powerfully and primarily nega- Braille tively, media images of disability shape the cultural center as the site inhabited by "able" people (by actors and lovers, a k I by doers and agents) precisely because it . . . is a site where people with disabilities (imaged as pitiable or as fearfully or ir- revocably flawed, as useless, dependent, w a sexless, or evil) are missing or are known n co P 9 f 11 Y .. . . only safely and trivially. . . The debate over Canon formation has made clear the power of control over the terms of popular discourse. In querying the terms of representation of disability in the course, we sought to bring to crit-and asserted that disability studies as itlogic of that position and to the need for ical consciousness with our students theemerges will be built on a strong, broad,some extra funding to carry the project culture formations through which theirinterdisciplinary base. And while itforward. In practice, the collaboration is prior schooling and established curric-might seem trivial at first glance, by lo-structurally uneven and disparately re- ula had structured "disability." Further-cating the course in the liberal arts col-warded. As an administrator, Sue has full more, we sought to provide a site wherelege rather than in a professional school,time commitments beyond the time she students with disabilities could confrontwe opened the course to unrestricted en-manages to set aside for the course and rollment for students with disabilities under university rules cannot be paid for who were not registered in Education. her teaching because she receives a full The course came about From the very start, our course designtime administrative salary. Although she through administrative and and pedagogy have been collaborative. Ashas since enrolled in graduate school, a team of teachers, we come from quiteMad came to the course as an "outside faculty efforts to keep different positions. Sue works as Directorexpert," as a non-academic activist con- diversity programming of the large Disability Services office atsultant, paid an hourly consultant rate the University of Minnesota-Twin Cities.for her work in the course. Only Terry is vital during a period of In that office, she addresses accommoda-in a regular faculty line and only he re- backlash and resistance. tion needs and campus climate issues and ceived standard faculty rewards for this supervises staff who provide or facilitate classroom and workplace accommoda- overtly the imaging which had shapedtions. Marj is Executive Director of the them and America's perception of them.Womyn's Braille Press, consults with ed-Media images of disability With all, we hoped to come to know theucational institutions and industry aboutshape the cultural center various cultural purposes served by thedisability, and teaches part time on dis- creation of such disabling images. ability and human relations. Both Sue andas the site inhabited by To signify this break with prior for-Marj have visible disabilities and are ac-"able" people (by actors mations of disability and to shift the dis-tive within disability communities. Terryand lovers, by doers course toward cultural critique, we de-is T.A.B.,, a faculty member in Writing liberately offered the course through theand Literature who has a history of work-and agents). American Studies Program rather thaning with campus disability groups, ini- through one of College of Education de-tially entering the field through pedagog- partments. On most campuses, disabilityical and administrative work on accesswork. We are searching for ways to main- studies courses are located in Educationaland from involvement in culture studiestain the collaboration and to make the re- Psychology or Special Education. Weand multicultural education. wards and institutional authority of all wanted to indicate a new location for dis- The course came about through ad-participants more equal. ability studies both intellectually andministrative and faculty efforts to keep We organized the course around some structurally. We knew that the course was diversity programming vital during a pe-straightforward objectives. In articulat- a first step locally in what has become a na- riod of backlash and resistance. Terrying them at the very start of the syllabus2 tional struggle to claim legitimacy for newhad been asked by the summer instituteand in referring to them at intervals in versions of disability studies, freed fromto develop a disability studies course. Hethe course, we hoped to focus classroom the constraints of special-educationalagreed to do so on the condition that theactivities on our shared purposes. Given practice and medical intervention modelscourse be developed and taught collabo-the focus of the summer institute on di- with which the study of disability hasratively with people from the campusversity curriculum for K-12 and special been marked previously. In so doing, wedisability community and from the veryeducation teachers, we phrased objec- made clear to potential students that thisvital off-campus disability scene. Uni-tives in terms of school dynamics. The was not another teacher "methods" course versity administrators agreed to theobjectives are as follows: 12 82 RADICAL TEACHER NUMBER 47 the to examine the dynamics of "imaging" ritory for them, despite the fact that it In general, student reaction to completely posi- of disability in literature, TV, and film, seemed fairly elementary to us and tocourse has been nearly especially in terms of curriculum colleagues consulted in preparation oftive. Quite frankly, that hasn't surprised sound in to introduce redefinitions of disabilitythe course. The core readings consistedus. We know it's a good course, and disability culture(s) of surveys of literary, television, andits intellectual formation and purposeful to speculate about the roles of educa- movie images; disability culture theory;in its structure. What has been rather re- tors in promoting and resisting "repli-some brief history or prior uses of popu-markable, however, has been a pattern cations" of socially constructed powerlar images of disability in genocidalof conflict and discomfort brought on by the relationships, with special emphasis ways; and Basic Skillsa collection ofempowerment of, by the centering of on disability as an object of power short fiction by Anne Finger reclaimingexperience of, students with disabilities relationships disability. We also critically viewed filmsin the course. to come to know and own our roles as where disability is imaged in various Three sorts of proximate issues seem first educators, especially as regards the ways, from stereotyped figures used into have caused such conflict. The way our classrooms resist or replicate high school film/lit curricula (e.g., differ-should not have surprised us, but did. stereotypes about and stereotypic ac-ent versions of Of Mice and Men) toSome of the K-12 teachers used habitual tions toward people with disabilities, reclamation of disability (My Left Foot)language patterns which are offensive to early and ways in which our classrooms to disability sex (Coming Home) to themany people with disabilities. In the might promote informed, accurate, futuristic replications of prior dis-days of the course, as readings addressed and respectful ideas and practices courses (The Road Warrior). questions of vocabulary and power, ex- Disability studies and materials whichchanges about language such as "wheel- In addition, to make apparent the shiftsupport the field are growing. In 1995,chair-bound" or "victim of polio" were in power relationships addressed in theour third offering of the course, weneutral. As time passed and offensive ha- added a historical survey of disability asbitual language re-entered the conversa- imaged in film (Norden, 1994) and intro-tion, tempers flared in reaction to inad- Some of the K-12 teachers duced choices of extended prose to in-vertent use of such terms. While this clude Jean Stewart's The Body's Memorydiminished with time, it has persisted in used habitual language and Susanna Kaysen's Girl, Interrupted.ways which puzzle us. patterns which are We also use the award-winning docu- The second has had to do with a more offensive to many people mentary "When Billy Broke His Headfundamental social disorientation brought and Other 'Pales of Wonder," featured onon by the course content and structure. with,disabilities. PBS and released in early 1995, as anExuberant at finding intellectual ground opening focal point. for liberation from disabling images, Individual or collaborative projects course, all materials were prepared inimmersed students in other readings or multiple formats as the default. As muchfilms. Students were encouraged to takeThe course reading, as possible, we sought to subvert the au-the projects in directions that fit their thority of received assumptions aboutgoals for the course. Thus, many teach-viewing, and discussion "normal" media. Readings, syllabi, papersers created curriculum plans appropri-overtly dismiss the and presentations prepared by studentsate to the grade levels of their students, were all made available in whateverwhile some of the non-teachers used dis-"medical" and "deficit" medium was preferred by any individualability culture theory to give new read-models of disability. member of the class or instructionalings to familiar texts. In one instance, team. In practice, this meant that mostnon-disabled K-12 teachers collaborated members of the course preferred paperwith one of the disabled undergraduates print copies and received them, butto create a new junior high language artsbeing in class for the first time with a others preferred and received audio-curriculum segment grounded in Long-critical mass of other students with dis- taped, diskette (Mac or IBM, at their re-more, Gill, and other disability cultureabilities, and locating an intellectual quest), or Braille paper copies of all ma-theorists. community which confirms much of their terials at the time offirst use rather than Our course goals feature personal andlived experience, students with disabili- later as a special accommodation. Allcultural transformation. Consistent withties have found a forceful voice in the readings were ordered on audio tape wellthat, our pedagogy has been grounded incourse. Many of the teacher-students, in advance of the course. collaborative learning and focussed dis-having been trained in educational praxis The required readings are listed at thecussion in which readings are synthe-grounded in "care-for" and "speak-for" end of this article. While the readingsized and cultural assumptions are ex-assumptions about people with disabili- draws heavily on work familiar to mostamined and challenged. Because weties, became somewhat defensive in the who work in disability studies, for nearlypositioned ourselves as a collaborativepresence of this newly authenticated all of:the K-12 and special educationteaching group with multiple perspec-voice. In comments on the course evalu- teachers enrolled, and for many of thetives on the course topic, cooperativeation forms, this was addressed anony- students with disabilities, the readinglearning and exchange were the naturalmously as dissatisfaction with "con- was not at all familiar. This was new ter-pedagogical choices. frontational" exchanges between disabled 13 NUMBER 47 RADICAL TEACHER 83 and non-disabled classmates. From ourportion to her willingness to conform Images of the Disabled, Disabling collective view, this seems like the in-publicly and reassuringly to the domi- Images. New York: Praeger, 1987. evitably uncomfortable first steps in anant image of the "cripple-with-guts." HeGill, Carol. "A New Social Perspective on feared he had done her a grave disser- Disability and Its Implications for Re- healthy realignment of authority, the dis- habilitation." Occupational Therapy and orientation that must follow a sought-vice, in that her greatest success in Health Care 7.1 (Spring 1987): 49-55. after relocation of the center. school had been tied so publicly and so *Golfus, Billy, and David E. Simpson. The third issue seems more intellectu-positively to her autobiographized vic- When Billy Broke His Head ... and ally and culturally foundational, andtimhood. Those members of the class who Other Tales of Wonder. Videocassette. therefore less subject to "adjustment." Boston: Fanlight, 1995. The course reading, viewing, and discus- Goodman, Susan. "Handicapable': sion overtly dismiss the "medical" andAmerican cultures and Euphemisms abound in discussion of "deficit" models of disability. Moreover, a sub-cultures are not sealed disability." Minneapolis Star-Tribune 2 great deal of classroom energy goes into July 1991. interrogating the social construction offrom each other. Johnson, Mary. "The Bargain." Disability Rag September-October 1989: 5-10. disability, the resulting media images, "Emotion and Pride: The Search and the interplay between the two. Col- for a Disability Culture." Disability laterally, readings in disability culturewere not disabled tended to reassure him Rag. January-February 1987: 4-10. provide an alternative to the entrenchedthat he had done the right thing in help-'Kay sen, Susanna. Girl, Interrupted. New views. The prior education of the K-12ing to "raise her self-esteem." The stu- York: Thrtle Bay Books, 1993. teachers and special educators enrolleddents with disabilities, however, tendedKriegel, Leonard. "The Cripple In Litera- in the course, and the curricula in whichgently, firmly to confirm his self-critique. ture." In Gartner and Joe. they have invested themselves profes-The difference in world-views, in dis- Krocell, Martin. "Handicapped Heroes sionally, are typically grounded in deficitability-epistemology was palpable. And, and the Knee-Jerk Press." Columbia Journalism Review May-June 1988: p 46. models of disability and are criticized byat least in the space of our course, it was irreconcilable. Littman, Karen. "Images." Disability Rag social constructivist criticism. Well- December 1983: 1, 3-8. intentioned, generous people thus find In sum, we're quite satisfied with the course, at least as a first effort. Working Longmore, Paul. "Media-Made Disabled themselves and their professional iden- People: Images in Television and Mo- tities questioned in this process. An ex-with it has taught us a lot about what to tion Pictures." Opening Doors 1 (Winter ample illustrates this recurring dynamic.expect as we build disability studies on a 1993): 4-6. multidisciplinary foundation and, in so One of the students, a middle school Ian- ."Screening Stereotypes: Images of doing, challenge deeply ingrained intel- Disabled People in Television and lectual, social, and personal authority Motion Pictures." In Gartner and Joe. We sought to subvert the structures. We're anxious for this dis-'Norden, Martin. The Cinema of Isolation. cussion to grow. New Brunswick, NJ: Rutgers UP, 1994. authority of received COURSE READINGS Ronan, Richard. "Seated Nude" (poem). assumptions about Titles introduced for 1995 are marked Despite this Flesh. Ed. Vassar Miller. with an asterisk(*). Austin: University of Texas Press, 1985. "normal" media. Said, Edward. "The Politics of Knowledge." Baskin, B., and K. Harris. "Assessing and Raritan 11.1 (Summer 1991): 17-31. Using Juvenile Fiction Portraying the Scheer, J., and Nora Groce. "Impairment guage arts teacher, found himself near Disabled." Notes from a Different as a Human Construct: Cultural and tears in a class discussion. During the Drummer. New York: Bowker, 1977. Historical Perspectives on Variation." previous year, he had spent a great deal Preface. More Notes from a Differ- Journal of Social Issues 44.1: 23-37. ent Drummer. New York: Bowker, 1984. Shapiro, Joseph. No Pity. New York: New of time working with a young woman "The Disabled in Literature." More wha has cerebral palsy who had been York Times Books, 1993. See Introduc- Notes from a Different Drummer. New tion, chapter 1, and chapter 7. mainstreamed into his class. He had York: Bowker, 1984. coached her in writing an essay in the 'Stewart, Jean. The Body's Memory. New Burleigh, Michael. "Euthanasia and the York: St. Martin's Press, 1989. "C.P. victim-overcoming" or "super-crip- Third Reich." History Today 40 (Febru- among-the-normals" genre, an essay ary 1990): 11-16. NOTES which had won a national award andCarpenter, Sandra. "MoviesA Wheel- "T.A.B." is disability-speak meaning brought much recognition to the student. chair View." Fuse-Agitprop Culture "temporarily able-bodied," a deliberately He had taken a great deal of pride in this 14.5-6 (Summer 1991): 28-31. wry definition of those without disabilities student's accomplishment. After readingElliott, Deni. "Ethical Considerations." Re- as a function of their non-disability, invert- ing the accepted use of disability-referents Carol Gill and Mary Johnson (see reading porting on Disability: Approaches and Issues. Ed. Susan Elkins and Mary John-in ascribing status. list below), he was profoundly, thought- son. Louisville: Avacado Press, 1989. 2 The complete syllabus, as revised, is fully disturbed. Through the lens of GillFinger, Anne. Basic Skills. Columbia: available from Terry Collins, General Col- and Johnson, he had come to see his un- University of Missouri Press, 1988. lege, University of Minnesota, 128 Pleasant paid overtime work and the student's Garland, Robert. "Deformity and Disfigure- Street Southeast, Minneapolis, mN 55455; success as being grounded in confirma- ment in the Graeco-Roman World." His- e-mail . Spec- tion of her victim status, in the "bargain" tory Today 42 (November 1992): 38-44. ify preferred format: print, text file, or that allowed her success precisely in pro-Garther, Alan, and Tom Joe. Introduction. Braille. 0 P 14 RADICAL TEACHER NUMBER 47 Integrating Disability Studies into the Existing Curriculum: The Example of 'Women and Literature' at Howard University

BY ROSEMARIE GARLAND THOMSON

sa white woman with a quite vis- forms of what I call socially constructed ible physical disability who is a"corporeal otherness" even while it Aprofessor at a historically blackserves as a model for examining those university, I envision my role to be intro-same forms of cultural marginalization. ducing complexities into my students'What I intend to discuss here is how I at- tendency to see race as the primary, iftempt to introduce disability studies not exclusive, focus of individual anddisability consciousness, if you willin group identity. The centrality of racialthe context of a sustained focus on racial history, issues, identity, and communitydifference and to a lesser extent on gen- to many of the humanities and social sci-der distinctions. ence courses at Howard, as well as the In the broadest sense, my aim in teach- predominant black presence, foster aing disability studies is to complicate the strong ,sense of black solidarity amongreceived "we" and "they" conception that our students. Yet, at the same time,implies both a victim/perpetrator and a Howard's almost exclusively black stu-normal/abnormal relationship between dent and majority black faculty popula-the disabled and the nondisabled. To do tion also afford the kind of safe atmos-so, I probe the categories of "disabled" phere , where distinctions among theand "nondisabled," questioning their in- black community can be examined with-terpretation as mutually exclusive groups out the kind of recourse to minimizingwho are sorted according to bodily or differences in order to establish blackmental traits. I emphasize the social as- solidarity that sometimes prevails at pre-pect of disability, its relativity to a stan-on the social construction of disability, dominantly white institutions. My job atdard thatisculturally determined,by framing disability as a cultural read- Howard is to invite students to considerrather than its physical aspect, preciselying of the body that has political and how gender, class, and disability bisectbecause our traditional account of dis-social consequences, and by invoking a racial groupings and to interrogate theability casts it as a problem located inpolitics of positive identity, I hope to fa- very process of social categorization ac-bodies rather than a problem located incilitate understanding and identification cording to physiological or psychologi-the interaction between bodies and theacross identity groups rather than guilt cal characteristics. While many of myenvironment in which they are situated.and resentment. Such an approach is in- colleagues balance race with gender andIn short, this pedagogical goal requirestended to relativize and politicize both class analyses, introducing disability as aremoving disability from its traditionalthe categories of "disabled" and "able- category of social analysis is rare. Dis-medical model interpretation and plac-bodied" while casting a critical eye on ability studies is simply not a part of theing it into a minority model understand-the cultural processes that produce such general educational currency at Howarding. It means not describing disability indistinctions. or at most other institutions. The saliencethe language of inherent physical inferi- Yet, the kind of curricular refashion- of race as an analytical category at myority or medical rehabilitation but in-ing that enables me to teach courses in university seems to me to both obscurestead adopting the politicized languagedisability studies is not easily accom- and invite an examination of disability asof minority discourse, civil rights, andplished. It is often not feasible or timely a parallel yet distinct social identity based equal opportunity so as to invoke suchto convince institutions to offer new in corporeal or mental differentes. Thehistorical precedents as the Black Civilcourses whose titles include the term hyper-awareness of racial considerationsRights Movement and the Women's"disability" because it is difficult to clas- often overshadows or minimizes otherMovement. In other words, by focusingsify them. Administrations wish to know 15 NUMBER 47 RADICAL TEACHER 85 where they fit in the traditional schemeing exclusively on disability as the soleone way or another. In this way, ableism of the disciplines and categories: doesform of social otherness under consider-becomes one variation of a general form disability belong to the humanities, to so-ation, we simultaneously investigate theof social discrimination rather than an ciology, to special education, to health orbodily based social identities of race, eth-issue that the nondisabled students science? More problematic yet, hownicity, gender, and sexual orientation asmight think has nothing to do with them. broad an appeal might such coursesparallel but distinctive social categories By focusing on beauty as an oppres- have? Disability sometimes seems atwhose function is, among other things,sive cultural ideology perpetuated and first glance like a tangential or narrowboth to differentiate and in some cases toenforced by a wide range of institutions field of inquiry, one that would attractstigmatize individuals on the basis ofand received traditions, we are able at only a special population. Although Icorporeal differences. By intertwiningthe outset to diffuse any simple split be- would argue that disability studies shouldanalyses of a range of identities cultur-tween those who could slip into the nor- be a humanities course which, mostally constructed from bodily traits andmative position in regard to our topic and appropriately, satisfies a diversity re-behaviors, I encourage students to drawthose who are outside of it. There is no quirement, it can be arduous to. reframecomparisons among them as well as ma"we" and "they" when it comes to issues institutionally what might have been pre-bilize their own varied experiences ofof appearance and beauty. It is quickly viously perceived as a health course sodiffering types of social marginalizationapparent that feminine beauty is a per- that it can be understood as minorityor oppression. Thus, my aim is not tosonal issue for all the students, even the studies or cultural studies. 'lb diffuse thisprivilege disability identity, but rather tomen. Because the course fulfills a uni- logic .and its accompanying resistance, Iprobe the sociopolitical and psychologi-versity humanities requirement, it draws propose that we teach disability studiescal aspects involved in a matrix of oftenfrom a range of ages and the students as an integrated part of all the coursesoverlapping forms of social identitywho enroll represent a wide variety of we design, just as many of us have begunwhich rest on a premise of irreducibleacademic interests and experiences. The to consider race, gender, and class issuescorporeal difference. majority of students are women, some of as fundamental aspects of all disciplines Even though the course I am assignedwhom are sympathetic to and familiar and subjects of inquiry. Indeed, as theto teach at Howard is entitled "Women inwith feminism, some of whom are resis- disciplines of women's studies and eth-Literature," I subtitle it "Human Varia-tant to assertions of any cultural or his- nic studies have learned, such categoriestion and the Politics of Appearance" withtorical gender differences, and most of sometimes foster the assumption thatthe intention of linking political subordi-whom are curious about investigating an these are the only arenas where racial ornation to the cultural valuing and de-academic subject that seems so close to gender concerns are appropriately ad-valuing of bodies on the basis of theirlived experience. Men usually comprise dressed. One of the goals of disability ten to fifteen percent of the class. Some studies should be, then, to knit disability of the men are feminists themselves or as a category of analysis into all of theOur traditional account quite interested in women's issues, while courses in which we examine the work- often a handful of the men seem vocifer- ings of culture, especially courses thatof disability casts it as a ously hostile to the course's persistent address issues of representation, iden-problem located in bodies focus on the female position. Most stu- tity, subjectivity, or the political implica-rather than a problem dents are from middle-class or black tions of ideology. elite backgrounds, while some are from In such a spirit, I integrate disabilitylocated in the interaction the inner-city and are working class or issues into all the courses I teach as anbetween bodies and the from the working poor. Although virtu- English professor. By way of example, I ally all the students are black, they rep- will discuss here how I infuse disabilityenvironment in which resent a rich diversity of cultural back- studies into a particular undergraduatethey are situated. groundsAfrican-American, African, hunjanities course called "Women in Caribbean, Southern rural, Northern Literature" that I teach regularly at urban, Western U.S., mixed race and na- Howard. I intend to show here, first,appearance. Centering our inquiry on ap-tionalityas Well as a wide range of no- examples of material from various disci-pearance enables us to discuss not onlytions of what it means to be black. The plines that are not explicitly labeled "dis-the system of standards upon whichonly confident generalization I can make ability studies" but which can neverthe-social discrimination draws, but to con-about black students is that they are less be marshaled to elucidate the waysider how appearance norms contributeblack, a social identity which signifies di- that disability, along with other stigma-not only to racism but to other forms ofversely for them. tized identities, operates in Western cul-social oppression as well. In order to All the students seem quite eager to ture. Second, I will suggest how literaryscrutinize simultaneously race, gender,discuss and examine beauty standards, and cultural analysis might be enlistedclass, and disability,.the course under-body-image issues, women's changing to reveal the ways that social relationstakes as its primary subject a critical ex-social position, questions of identity and produce the cultural distinctions of dis- amination of feminine beauty. Since thecommunity, and especially relations be- ability, race, gender, as well as class.politics of appearance along with itstween men and women (a point I will re- Third, I will reflect on student responsesvalue system, "beauty," encompass mul-turn to later). Indeed, the course's great- to the material and the approach. tiple forms of social marginalization, allest challenge is managing coherent, In all my teaching, rather than focus-students can identify with the issues infocused discussions which draw on per- 16 8 6 RADICAL TEACHER NUMBER 47 sonal stories yet retain an analytical techniques, the cosmetic surgery, the edge. I nevertheless explicitly introduce name changeand howvulnerable it the feminist assertion that the personal made her to its transience as well as its is political so as to encourage sharing exploitation, the students see that beauty personal observations and experiences is not only a set of practices but that its both in class as well as in the daily read- empowerment is quite limited if not ac- ing response journals students are re- tually detrimental, as Marilyn's biogra- quired to keep. What critically and per- phy illustrates so well. What Marilyn and sonally scrutinizing beauty eventually Saartje have in common is that their bod- allows us to explore is the ways in which ies were displayed for profit before audi- cultures saturate bodies with meanings, ences in ways that were not necessarily an essential concept for understanding beneficial to them but that were dictated the disabled category. Along with illumi- by the culture's need to articulate for- nating how bodies are interpreted within mally its standards for the female form. societies, interrogating beauty also en- While the students' response to Saartje courages students to flush out the value Bartmann's display as an exoticized, sex- systems and the power dynamics that un- ualized freak is uniform disgust and out- derpin those interpretations. rage, their responses to Marilyn Monroe At the beginning of the course almost are usually more varied and complex. all students rather uncritically assume Juxtaposing the exploitative display of a that beauty is a somewhat fixed property white woman and a black woman invites, of the female body. Although many stu- of course, a consideration of race and its dents recognize the historical and cul- accompanying power dynamics. The stu- tural relativity of appearance standards, dents who reveal great hostility toward they tend to see beauty as an absolute Marilyn as the figure of perfect white physical quality free from political im- beauty that has been held up to them as plications or relations of power. Many forever unattainable are generally soft- students are willing to challenge impos- ened and their judgment is legitimated sible beauty norms, but few have taken by Gloria Steinem's analysis of the star's their critiques beyond the arena of per- miserable life. Other students clearly ad- sonal adequacy or inadequacy: Beauty, miringly identify with Marilyn, express- they often feel, is something corporeal ing sympathy that her life was not the that one has or does not havejust like a fairy tale that they imagined beauty disability. But whereas having a disabil- would confer. Regardless of whether ity seems a disadvantage, having beauty they adore or despise her, students gen- seems an advantage. Few students have erally find shocking the pathology and li- considered the disadvantages of beauty ability of Marilyn's beauty. For the most Thus, we further probe the operation of part, they are unaware of the ways that beauty and disability to see the parallels beauty is mediated by cultural presenta- and to uncover the social relations that tion: they assume that what they see is govern enforcement of bodily norms. the natural, unreconstructed woman and What I try to develop is a global critique that beauty delivers fulfillment. Most of appearance norms which at once tran- students are also astonished that white scends and draws from students' indi- women try to reconfigure their bodies be- Hottentot Venus, 1817. vidual relationships with their bodies cause they depart from beauty norms. and their personal negotiations with They are very aware of the disparity be- beauty demands. ducing and juxtaposing two historical fig-tween female bodies of African heritage One successful way to do this, I haveures to the class: one woman who epito-and the stylized contemporary white found, is to shift our attention to beauty'smized beauty, Marilyn Monroe, and an-beauty standard, but many do not realize mutually constituting opposite, "ugly,"other woman who epitomized beauty'sthat European female bodies usually can- which under scrutiny yields up theoppositenot just ugliness, but freak-not conform to the impossible ideal ei- recognition that while beauty may notdom. She is Saartje Bartmann, the nine-ther. For example, students frequently initially seem oppressive, the attributionteenth-century African woman knownexpress interest and surprise when I re- of its flip side, ugliness, is indeed disem-as "The Hottentot Venus," whose body,veal my own conviction about the inade- poweringa point I will return to later.which was normal in her own culture,quacies of my hair, which is straight and Introducing ugliness makes it easier todiffered so much from the Europeanlimp. This sometimes creates a com- denaturalize beauty, to show that it is astandard that she was recruited into Eng- plex dynamic in which students identify series of practices and positions that onelish and French freak shows. By recog-across race with white women on the takes in order to avoid the stigmatizationnizing how constructed Marilyn's beautybasis of shared gender experience even of ugliness. I accomplish this by intro-wasthe hair dye and makeup, the photoas they recognize white women's relative NUMBER 47 RADICAL TEACHER 17 8 7 is a specific form of social oppression for people with disabilities. The evaluating gaze of the male upon thefemale can be seen as parallel to the evaluating gaze of the "ablebodied" upon the disabled. One of the students' favorite readings, Alice Walker's autobiographical essay "Beauty: When the Other Dancer is the Self," specifically links disability to the politics of appearance as well as to the matrix of race, class, and gender. This essay interrelates Walker'sbecoming blind with her loss of femininity and worth and then chronicles how she re- gained a valued self image. Like the Mar- ilyn Monroe story, this particularized narrative is popular with students be- privilege within beauty culture's hierar-measured, and passive. They begin to understand here that the usually disem-cause it manifests in anindividual life chy of bodies. What they witness is an af- analyses firmation of what they already know butbodied, usually male figure who has thethe points that the cultural which cultural pressures mute: that apower to define and to evaluate isseldom explicate. pictured in these ads, but that the woman The course also highlights severalcul- satisfying life is not so simply linked to be- looking right. This, of course, lays thepresenting herself before the gaze is dis-tural sites where ambiguity exists played for his approval and explication.tween beauty and disability to suggest groundwork for examining the body's body social context and suggesting that theSuch critiques provide the students withthat the coercive valuing of certain types over others is what lies atthe heart disabled body does not necessarily pro-explanatory vocabularies which they tend to wield in their journals and essays of both disability and beauty oppression. duce misery. The first of these intersections isthe In order to denaturalize and politicizeas they discuss their lives. Oftenthey write authoritatively of spectators andnexus where prescriptionsfor beauty beauty culture, at the outset of the that of ad-spectacles, of gender and racial systems,result in bodily transformations course we critically view a number such vertisements to catalogue the qualitiesand of social constructions. amount to "disabilities." Discussing historically and culturally varied prac- of beauty which are so hyperbolically While the class is certainly a feminist and, relentlessly choreographed in theanalysis of how beauty operates as sex-tices as corseting, foot binding, clitorec- tomies, anorexia, and cosmetic surgery pages of women's magazines. With alittleism, it at the same time illustrates the reveals to us the cultural relativity ofthe guidance, students adeptly and zealouslymore general process of how thebody is the arena where asymmetrical power re-concept of disability, for suchpractices read the images, compiling a stunningly are understood in one context asthe uniform and narrow profile of acceptablelations are acted out. This sets us up for achievement of beauty or social accept- body traits for women which includediscussing how the categories of normal ability and in another context as pre- among othershairlessness,odorless-and abnormal so fundamental to disabil- cisely the kind of bodily transformation ness, a prepubescent slimnessand youth,ity oppression are products of a social re- softness, whiteness, thick wavy hair, aslationship in which one kind of personthat is taken to be a "disability." We par- ticularly focus on cosmetic surgery be- well as psychological characteristicshas the power to judge and to assume cause it is the practice fornormalizing such as passivity and Self-consciousness.normativeness, while another must sub- the (usually female) body that seems the While the students are keenly aware ofmit to judgment. The overwhelmingly the racist implications in the ads' cele-female class is thus able to make a leapleast exotic, distanced, or pathological to of identification between themselves asmodern American sensibilities. Indeed, bration of European physical features the confes- and of thinness, they have not usuallywomen, particularly black women,andmany of the students accept people who have disabilities: they comesional mode I invite with the reading re- thought through the role of women's bod- anoretic or ies as spectacles in a consumer societyto understand that the process ofobjec-sponse journals to reveal bulemic tendencies or admit to having that accords males the role of spectatortification that is a part of the ideology of and actora relationship that is writfeminine beauty is related to the processconsidered cosmetic surgery to "im- prove" their looks or to "correct" what large, if subtly, in advertising. Analyzingof objectification that is part of being beauty has told them are their deficien- the images and reading theoretical cri-considered disabled. Just such a dynamic tiquessuch as John Berger's Ways ofbetween the defining subject and the de- cies. Because studies indicate that black comfortable Seeing, an exploration of the social rela-fined object produces the traditional in-women are generally more with their bodies than white women and tion between the male spectator and theterpretation of physical disability as ab- generally suffer less frequently from female spectacle in European oil paint-normality or inferiority. Examining this ingreveals for students a dynamic, inrelationship allows us to uncover theeating disorders, I am surprised that how inad- this case gendered and racialized, inpower relations involved in the gaze notmany of my students disclose which one role is to look, judge, and act only in terms of gender and race, but alsoequate theyoften secretlyimagine while the other role is to be gazed upon,to relate that concept to "the stare" thattheir bodies to be, how tormented they RADICAL TEACHER NUMBER 47 18 through will- rectly by discussing the concept thatability, and is often the conduit are by these convictions, and how which female students come to person- ing they would be to alter painfully theirthere is no place outside acculturation for anyone to be, that we all want to be at-ally identify with the socialstigmatiza- bodies to fit the standards. My suspicion While is that the studies are measuring classtentive to our appearance even as we trytion that accompanies disabilities. being overweight can constitute afunc- differences more than race differencesto avoid being in thrall to it.We talk much about placing ourselves in relationtional disability, the students arequick and that my students are responding to condemnation at- middle-class pressures to conform toto beauty norms in ways that we can liveto see that the social tached to being obese is usually far more beauty norms that underclass women,with. Nevertheless, indictments erupt in class discussions that I try at once todetrimental than the impairmentin- who are perhaps more alienated from volved. Furthermore, the students' own mainstream requisites, might be spared.defuse and to play out. The intense hair struggle with our cultural tyrannyof Through framing cosmetic surgery asdebate, provoked predictably by Alice slimness enables them to recognize that part of the beauty industry and ideology,Walker's witty and highly politicized bodily aberration is relative to a cultural students can recognize that the surgicalessay about "oppressed hair,"always provides a forum which at least exposesand historically specific standard that normalization of the female body to meet such as the cultural standards of beauty is parallelthis dynamic even if we never resolve it.serves particular interests, cosmetic or fashion industries, for ex- to the coercive "corrective" procedures The discussion about what it meang and that disabled people are often subjectedwhether or not a black woman shouldample. Again, autobiographical essays Roberta Galler's about being disabled to in order to reform their bodies to meetstraighten her hair is highly charged imageswith defensiveness, accusations, andand Carol Munter's about being obese norms that they defy. Some of the students can and discourse we examine are articleshumor, serving as a conduit to examin-are read together so that compare the subjective experiencesof and ads on cosmetic surgery that are fea- ing identity politics, the racism inherent in beauty standards, and the politiciza-both women. As I mentioned before, my tured in women's magazines. Critically students seem to respond with greater studying this marketing language en-tion of personal practices. The ever in- understanding and interest to the identi- ables students to understand how uni-conclusive hair question perhaps best il- Rory and personalizing mode of the in- form the appearance standard is and howlustrates the complexity of these issues. dividual life story presented in thesub- constructed it is even as it masquerades Another dynamic that requires scru- tiny is what I call coercive agreement.jective voice than they do to theorizing as natural and effortless. Perhaps most each writer interesting is that with both disabilityMost students' response to the conceptor historical surveys. While concludes that society rather than their and beauty the naturally occurring bodyof disability as a site of oppression is that bodies needs to change, Munter's mov- is mutilated in order to conform to a stan- ingly account of the denigration of her dard that is presented to us as "regular" and body because it is fat presents an idea or "normal." Just as rhinoplasty The hyper-awareness of of course, liposuction sculpt the "ugly" nose or new to most students, who, racial considerations often have internalized the script of blaming the "fat" hips to the standard contours overshadows or minimizes the overweight person rather than the beauty dictates, surgeons "reconstruct" impossible standards the culture of the disabled body and fit it with myriadother forms of what I call prostheticsoften only to police life's beauty demands. Yet, frequently argu- physical variations, ones that are appar-socially constructed ments erupt in class when some students frame fat as unhealthy, undisciplined, ently so intolerable within contemporary"corporeal otherness." American culture. It is this tyrannical and inexcusable excess while others concept of "normal," serving as it does fiercely defend themselves or friends and family as victims. Fatwhich I point capitalism, white supremacy, and patri-they have never thought about it before. out legally constitutes a disabilityis archy, that I want the students to come toMany quickly and profoundly make the connections I hope to establish with racethe subject most often mentioned in the question. reading response journals. It is remark- Mounting such a comprehensive cul-and gender, while some seem to unre- able how freely some students assail tural critique creates some pedagogicalflectively adopt an overly sympathetic obese people in ways they would never dilemmas I am not sure I successfullyattitude that I suspect may be in defer- negotiate. By attacking beauty stan-ence to me because I have a disabilityopenly denigrate people with disabilities, on the assumption that obesity canbe al- dards, even if I let the material speak forand am the teacher. This coercive agree- tered by an act of will. The class never me, I risk implying that thestudents arement is one of the hazards of advocating reaches consensus on this point or on the complicit in their own oppression. Whatin the classroom for a group to which you lively argument of whether it is appro- floats palpably in the classroomcom-belong. Such a situation is one reason I priate for black women to straighten ing from many sourcesis the accusa-prefer invoking as many manifestations their hair. Nevertheless, the juxtaposi- tion of false consciousness, the sugges-of corporeally justified oppressive social tion that the students themselves arerelations as I can to analyze the largertion of disability and fat oppression em- being castigated for their participationprocesses at work. phasizes that often the cultural context surrounding and defining our bodies, not in beauty practices. More problematic One of the liveliest and most polarized yet is the logic inherent inthe.,critiqueof these instances always occurs aroundour bodies themselves, creates problems that caring about men is consorting withthe issue of "fat," which lies in a zonefor usand that this context rather than enemy. I try to address this problemdi- somewhere between ugliness and dis-our bodies requires alteration. 19 NUMBER 47 RADICAL TEACHER To complement the autobiographicalmight have saved her. The second is(all of which are listed at the end of this accounts and to move the issue of ap-Alice Walker's novel The Color Purple,essay) so that Morrison's and Walker's pearance from the individual body intowhich provides a prescription for com-narratives act as individualized testi- the larger context of social relations andbatting the complex matrix of forcesmonies to the concepts the course is de- value systems that support power dy-which attribute "ugly" to certain femalesigned to examine. The particularization namics, we read as well excerpts frombodies. While Morrison's is a descriptiveof the issues that the novels accomplish historical critiques of those systemsaccount of the tragic political and per-gives the students a sense of reality and such as Naomi Wolf's The Beauty Myth,sonal consequences precipitated by whatimmediacy about the ways that the poli- Gerda Lerner's The Creation of Patri-I am calling "the ideology of beauty,"tics of appearance function in the com- archy, Simone de Beauvoir's The SecondWalker's account offers students an opti-plexity of lived experience. Moreover, Sex, Elizabeth Spelman's Inessentialmistic paradigm for resistance andtheir journals, discussions, and essays Woman, and bell hooks's Black Looks:transformation. Morrison's novel is asuggest that the students are able to Race and Representation. Some studentstragedy which demonstrates the com-identify often in profound ways with the find the accounts of the systematic na-plexity and relentlessness of oppressiontwo central characters, Pecola and Celle, ture of sexist oppression to be a revela-and Walker's novel is a comedy (not aon the basis of their beingjudged as tion that frees them from a sense of indi-funny story but a painful tale with a"ugly." What Morrison's novel allows the vidual failure for their own insecurities happy ending) which details the triumphstudents to understand is that "ugliness" as women, while others resist accountsof a woman over those same crushingis not located in any objective physical of patriarchy as having so much histori-forces. Taken together, the two novelscriteria but instead in the ideological sys- cal force and precedence. One of theconstitute the dual aspect of cultural cri-tems of denigration that produce "ugli- most persistent sentiments among many ness" as a condition of racism, sexism, studentsboth male and femaleis the and classism, not as a property of a par- myopic and rather defensive convictionMost students' response to ticular body. Yet the students seem to that women of this generation are fully find most compelling the emotional in- liberated from the residue of sexism,the concept of' disability as volvement they establish with the char- that the problems are simply gone. It is a site of oppression is that acters, the personalization of social and interesting that students tend to recog- political issues that narrative and identi- nize the enduring presence of racism,they have never thought fication make available to them. My in- while insisting that society no longer lim-about it before. tention is to devastate them with Morri- its women. Perhaps this is an important son and uplift them with Walker, for enabling progress narrative that should Celie transforms the sentence of ugli- not be questioned; on the other hand, ittique: a complex articulation of the prob- ness not through Prince Charming nor risks denial and naivety. One of my most lem in its multiple material manifesta-cosmetic surgery nor weight loss nor any difficult challenges is to facilitate a com-tions and a speculative strategy forof the traditional prescriptions for fe- prehensive critique of systematic racism,resistance. male self-creation. Instead, Walker's sexism, and ableism while still encourag- As preparation for reading the as-Celie transfigures from ugliness not into ing empowerment and exploring modessigned novels and autobiographical writ-beauty, but into personal empowerment of resistance. ings, we thoroughly discuss the issue ofcatalyzed by female community, mean- So in order to expose the systematicrepresentation, stressing the ways thatingful work, economic independence, nature of oppression without suggestingrepresentation shapes the reality that itsexual sovereignty, and loving recogni- that it inevitably overwhelms individualsupposedly reflects. We examine the po-tion of others. Women in the class re- agency, the first part of the course delin-litical and ethical consequences of liter-spond particularly favorably to The eates the complex workings of oppres-ary representation by reading Susan Son-Color Purple because, I think, it enables sion while the second part explores po-tag's study Illness as Metaphor, whichthem to imagine themselves escaping tential strategies of opposition. Becauseelaborates the metaphorical uses of tu-social judgments of their bodies. the course "Women in Literature" is of-berculosis in the nineteenth-century and When the class seems adept at articu- fered as an English as well as a humani-cancer in the twentieth century in orderlating this transformation, I use it as an ties course, literary analysis occupies ato suggest the negative consequencesopportunity to move among racism, sex- central place. To this end, we read twothat these modes of cultural represen-ism, and disability by differentiating be- novels which place at the center of theirtation hold for people who have thetween what I call the traditional "narra- social critiques the institution of femi-diseases. Sontag's classic analysis thustive of overcoming" and another story I nine beauty as it is inflected with racial,allows us to use the representation ofterm the "narrative of resistance," both class, and gender considerations. First isdisability as a vehicle to understandof which are common disability narra- Toni Morrison's The Bluest Eye, a pow-the representation of race in Morrison'stives. Although both narratives are affir- erful novel which presents how the inex-novel. mative and perhaps related, an essential tricable,institutionalizedforcesof The juxtaposition of The Bluest Eyedistinction needs to be made. The con- racism, sexism, and classism combine toand The Color Purple form the center ofventional "narrative of overcoming" sug- enact the tragic destruction of a young,the course. Around each novel are clus-gests that one's body is the recalcitrant black girl, abetted by the often unwittingtered the analytical or historical essaysobject that must be surmounted, often ei- complicity of the very community thatand the shorter biographical readingsther by some physical or psychological NUMBER 47 2 0 9 0 RADICAL TEACHER in specificity, the distinct character, of each The Flamingo's Smile: Reflections feat of rehabilitation or by a spiritual Natural History. New York: W.W.Nor- transcendence of the anomalous body. Inform. In comparing the disability cate- gory with race or gender systems, one ton, 1985. 291-305. contrast, the "narrative of resistance" hooks, bell. Black Looks: Race andRepre- claims rather than transcends the body,must be vigilant not to conflate them so sentation. London: Thrnaround, 1992. rejecting the traditional pronouncementas to suggest that racial categorization, Lakoff, Robin. "Beauty and Ethnicity." of its inferiority and asserting the rightfor example, is the same thing as disabil- Face Value: The Politics of Beauty.Bos- of that body to be as it is. The notion ofity, but simply in another form. The dis- ton: Routledge & Kegan Paul, 1984. "resistance" thus locates the disabled ortinguishing aspects of disability such as 245-276. otherwise disapproved body within a cul-physical pain, impairment, onset and ori-Lerner, Gerda. The Creation of Patriarchy. tural environment in which norms cre-gin, social milieu, specific economic con- New York: Oxford UP, 1986. 212-243. ate deviance while the concept of "over-cerns, and the like must not beerased by Lorde, Audre. Zami: A New Spelling of My coming" places the deviance within thethe move toward embracing a minority Name. Freedom, CA: The Crossing body deemed aberrant. model. Nor should we fall into the sim- Press, 1982. If on the one hand the novels act asplistic equation I often hear either that Morgan, Kathryn Pauly. "Women and the touchstones for an identifying under-"everybody has a disability of some Sort" Knife: Cosmetic Surgery and the Colo- or that "being a woman (orblack) is a dis- nization of Women's Bodies." Hypatia standing, on the other hand they also 6.3 (Fa111991): 25-53. arouse the most profound resistanceability." Comparing various forms of marginalized identities also risks invok-Morrison, Toni. The Bluest Eye. New among students. In both Morrison'sand York: Washington Square Press, 1970. ing unproductive attempts to determine Walker's novels a simplistic reading sug- Munter, Carol. "Fat and the Fantasy of with gests that the women are victims and thea hierarchy of oppression. I try Perfection." Pleasure dnd Danger: men are perpetrators. Although Ioffervarying degrees of success to shift dis- Exploring Female Sexuality. Ed. Carole ample textual evidence that no easy po-cussions of who suffers more than whom S. Vance. Boston: Routledge & Kegan larity between innocent women andinto examinations of complexity, interre- Paul, 1984. 225-231. guilty men is supported by the texts, thelatedness, and uniqueness. While it is Piercy, Marge. "Hello Up There." To Be of subjects of incest and rape that the nov-useful and illuminating to make compar- Use. New York: Doubleday, 1969. 93. els explore always spark discussions inisons and seek out underlying similari--. "A Workof Artifice." To Be of Use. which some students usually take en-ties among stigmatizing processes, it is New York: Doubleday, 1969. 75. trenched positions which pit men againstequally important to particularize each-. "UnlearningNot to Speak." To Be women. The conflict that is sometimesidentity so as to address precisely how it of Use. New York: Doubleday, 1969. 97. fueled is exacerbated by the issue ofworks in the world and how its attribu-Sontag, Susan. Illness as Metaphor. New York: Farrar, Straus, and Giroux, 1977. racial solidarity and is shot through withtion affects the persons involved. Steinem, Gloria. "The Body Prison." Mari- suggestions of betrayal on both sides. COURSE READINGS lyn. New York: New American Library, Sometimes in class discussions, a great AND WORKS CITED 1986. 137-154. deal of hostility between men and women Alexander, Elizabeth. "Cuvier." The Venus Wade, Cheryl Marie. "I am Not One of emerges that I must try to process sensi- Hottentot. Charlottesville: University the." Sinister Wisdom (1987). Reprinted tively and equitably. There are also al- of Virginia Press, 1990. 3-7. in this issue of Radical Teacher. ways resistances to the critique of beauty Bass, Alison. "When the Mirror Reflects a Walker, Alice. The Color Purple. New that follow the logic that to reject beauty Distorted Self-Image." Boston Globe 21 York: Washington Square Press, 1982. standards is to reject men. In every class, October 1991: 27-29. -. "OppressedHair Puts a Ceiling on I feel that some students leave with the Berger, John. Ways of Seeing. London: the Brain." Living by the Worth Selected conviction that the course is essentially BBC and Penguin Books, 1972. Chapter Writings, 1973-1987. San Diego: Har- 3, 45-64. court Brace Jovanovich, 1988. 69-74. anti-male, no matter how much I attempt Caputi, Jane E. "Beauty Secrets: Tabooing to present complexity and drawparallels "Beauty: When the Other Dancer the Ugly Woman." Forbidden Fruits: Is the Self." In Search of Our Mothers' among racism, sexism and ableism.The Taboos and Tabooism in Culture. Ed. journals indicate that a few students Gardens. New York: Harcourt Brace Ray Browne. Bowling Green: Popular Jovanovich, 1983. 384-393. choose to see beauty as innocent and me Press, 1984. 36-55. "Finding Celie's Voice." Ms. of theClements, Marcelle. "The Mirror as a curmudgeon. Most often, some December 1985: 71-96. because they Cracked." New York Times Magazine men hold this view, perhaps Wolf, Naomi. "The Beauty Myth." The 15 September 1991: 71-73. are emotionally identifiedwith the male Beauty Myth: How Images of Beauty Davis, Kathy. Reshaping the Female characters in the novels rather than with Are Used Against Women. New York: the women or perhaps because beautyis Body: The Dilemma of Cosmetic Surgery. New York: Routledge, 1995. William Morrow, 1991. 9-19. less anxiety provoking for them. de Beauvoir, Simone. The Second Sex. Young, Iris Marion. "Breasted Experi- ence." Throwing Like a Girl and Other In conclusion, I need perhaps to offer Trans. and Ed. H.M. Parshley. New a caveat concerning theposition I have York: Vintage Books, 1952. xv-xxiv. Essays in Feminist Philosophy and advocated so unequivocally here. It is Galler, Roberta. "The Myth of the Perfect Social Theory. Bloomington: Indiana important to recognize the limitations of Body." Pleasure and Danger: Exploring UP. 190-209. the ,rnethodology that underlies the Female Sexuality. Ed. Carole S. Vance. "Women Recovering Our Clothes." course that I am describing.BY relating Boston: Routledge & Kegan Paul, 1984. Throwing Like a Girl and Other Essays in Feminist Philosophy and Social Theory. a variety of forms of socialstigmatiza- 165-172. Bloomington: Indiana UP. 177-187. 0 tion, one risks failing to make clear the Gould, Stephen J. "The Hottentot Venus." 21. NUMBER 47 RADICAL TEACHER 'Silence Is NotWithout Voice': Including Deaf CultureWithin Multicultural Curricula

BY H. DIRKSENL.BAUMAN AND JENNIFER DRAKE

ta time when universitieswork to incorporate multicultural curric- Aula and canon revisions, they still perpetuate the pathologization ofDeaf culture, language, and literature.' Most universities have yet to realize that Deaf people are not a loosely knit group of au- diologically impaired individuals, but are, rather, a linguistic and cultural minority whose complex history, language, and lit- erature warrant sustained recognition. Only a handful of American universities, for example, presently accept American Sign Language for legitimate language credit. As social science and humanities departments do not perceive Deaf studies to fall within their curricular domain,the study of "deafness" becomes relegated to special education departmentsdis- cursive straightjackets that confine Deaf culture to pathological constructions. But what can a predominantly "hear- ing" university without a Deaf studies de- partment do to rewrite these misunder- standings about the Deaf community? This is a question that we have been ask- ing for different reasons and from dif- ferent positions. When Dirksen crossed the border into a Deaf cultural space as a dormitory supervisor at the Colorado School for the Deaf and the Blind, he be- gan to redefine his own pathological no- tions about Deaf persons. The Deaf stu- dents and faculty were not isolated and linguistically deprived as he had as- sumed; rather, they enjoyed a strong sense of community based on an"offi- cial" language. He, not the Deaf, became the linguistic outsider. Upon returning to a university setting, Dirksenfound that even "progressive" languageand litera- ture faculty did not recognize American Sign Language as an "official" language ELIZABETH POWELL or Deaf identity as a culturalidentity. RADICAL TEACHER NUMBER 47 22 92 Lessons in Laughter: TheAutobiography Over the past few summers Jenniferwhat "literature" is/does, and require the of a Deaf Actor, as signed toEugene Berg- had been creating the curriculumfordevelopment of engaged reading strate- man. Bragg's autobiographyraises issues "Narratives of Struggle," a writing coursegies. Hooks's essay "Narratives of Strug- of the role of education as a meansto co- exploring the centrality of so-called mar-gle," in Philomena Mariani's Critical Fic- tions:The Politics of Imaginative Writing, erce assimilation into"hearing" culture. ginal communities in forging American Student facilitators Silvia Sanchezand (multi)culture. When Dirksen became co- served as the template for the course, providing students with a critical vocab-Sabrina Lebron led the classthrough a instructor for the course, the personal close reading of Bragg's title scenein and pedagogical benefits of linking Jen-ulary"(de)colonization," "political self- which a hearing teacher forces hisDeaf nifer's work in multicultural studies withrecovei-y," "resistance," "imagination" that they could use, and struggle with,students to laugh like "humans," thatis, Dirksen's work on Deaf culture became hearing people. Students were appalled obvious. We hoped that the multiculturalthroughout the course. Each week had its own thematic focus,that hearing culture could be socoercive context of the course would encourage and violent idthe name of education. cul-such as "Resisting Silences/Finding an engaged reading of Deafness as We then moved on to Medoff's play, disability,Voices," "Hybridity and Cultural Sur- ture rather thaa deafness as which also takes up the role of education and that the texts on Deaf studies wouldvival," and "(De)Colonization, Coalition Building, and Difference." At the start ofin disciplining "cultural subjects." Inad- each week the class wrestled with thedition, since Medoff is a hearing play- wright, the play opens up discussion about DiscussingDeaf language meanings and implications of these titles by brainstorming associations on the"hearing" representations of Deaf per- and culture in a chalkboard, unpacking dictionary defini-sons. These issues ofrepresentation be- multicultural context tions, returning to hooks's essay, andcome especially pronouncedwhen the playing with the critical possibilitieswritten text of the play is juxtaposed encouraged students to suggested by these title phrases. with the film version. Silvia and Sabrina, in consider that American Discussions of Deaf culture first oc-for example, brought in film clips Sign Language is a "real" curred directly after reading Maxineorder to illustrate the film's depoliticiza- Hong Kingston's "Song for a Barbarian tion of Deafness in favor of the love story, language and that the Reed Pipe" during the "Resisting Si-which, they agreed, was more likely to Deaf are a "real" lences/Finding Voices" week. This juxta-sell movie tickets. Reading andwatching position of texts and cultures worked tothese two textual representations of Deaf- people en- cultural community. extend and to complicate the discussionsness as imagined by hearing of language and (multi)cultural identity,couraged the class to reflect upon our voice, and silence that we had beguninown situation as ahearing classroom disrupt hearing teachers' and students' talking about Deaf culture. In this situa- reductive ways of thinking about culture,response to Kingston's work.Student fa- identity, and community. cilitator Vivian Lei began a lively discus- We taught "Narratives of Struggle" assion about whether or not silences can part of the 1994 BinghamtonEnrichmentwork as a strategy of resistance and aboutStudents began to see that Program (BEP) at SUNY's Binghamtonhow one person's silence is another per-the family is not the only University BEP is part of New York State'sson's expressivenessthink of Kingston's Educational Opportunity Program (EOP)black paintings "full of possibility," aboutsite for the transmission with at Binghamton, which providesacademicto reveal "mighty operas." Faced of cultural identity and support to students from educationallyandthe difference between Kingston's em-that communities include, economically disadvantaged backgrounds. powering reading of her own paintings As such, students in the Binghamton En-and her teacher's pathologization of them,and are built from, our richment Program come from the work-students began to talk about negotiatingdifferences and multiple ing class or working poor; some cometwo or more languages and cultures.While from group homes or foster care; manysome students focused ontheir own andallegiances. grew up in single-parentfamilies; mostKingston's struggles to live "inbetween" and the pressure to assimilate, othersde- are from New YorkCity, though a few live tion, hearing students and teachers upstate; and the majority are ofAfrican, scribed the benefits of drawing on two lan- guages and cultural traditions,pointingmight think of themselves not as speak- Caribbean, Latino, and/or Asian descent. ing in place of Deaf peoplefor Deaf Students enrolled in "Narratives ofout that "inbetweenness" mightbe lived not as culture clash but as apowerful po-people may "speak" through texts and in- Struggle" also enrolled in "Media (Ill)Lit- vited lecturers and performersbut eracy and Self-Governance,"taught bysition from which to speak and construct personal and community identities. rather, as hearing people engaging in Kassie Fleisher. While the media studies self-reflective conversation about the au- course taught students to readthe media's These conversations about language, culture, assimilation, and resistance pro-dist oppression of the Deaf community. representations of "truth" in critical and Student Youlla Pierre chose to write complex ways, our writing course lookedvided a strong transition into discussions Markone of her papers about Childrenof a at texts that bell hookswould call "criti-of Deaf culture as represented in Medoff's play Children of a LesserGodLesser God in order to explore more fully cal fictions" texts that resist dominant dominant cultural assumptions about the discourses, challenge our expectations ofand excerpts from Bernard Bragg's 23 NUMBER 47 RADICAL TEACHER Deaf community. In the following pas-culture in a multicultural context en-various resistance struggles to their own sage, she articulates the differences be- couraged students to consider that Amer-struggles against racism and classism. tween "hearing" and "listening," "silence" ican Sign Language is a "real" language When approached with critical aware- and "deafness:" and that the Deaf are a "real" culturalness, incorporating Deaf culture into community. For example, a paper bymulticultural curricula can bear sub- Hearing is when you have heard Amoy Chambers argued that bell hooks'sstantial rewards for both Deaf and hear- what a person has said and you learn call for "political self-recovery" requires ing communities. For the Deaf, recon- and empathize with that person. .. . the use of so-called "minority" languages textualizing Deaf identity in a cultural Deaf means that due to biological like American Sign Language. Reading aframework alongside Latinos, African- reasons you were born without the scene from the film in which Sarah startsAmericans, Chinese-Americans, gays and ability to hear voices. It could also dancing with James but ends up dancinglesbians, and other cultural/racial/ethnic mean that you are unwilling to hear. with herself and loving it, Amoy suggests groups represents significant advance- The word silence means not speak- that Sarah resists the label "disabled" byment toward the recognition that the ing with your voice or it could also claiming an identity based on the power-Deaf community is a linguistic minority mean that you, unwillingly or will- ful expressiveness of her body's move- ingly, want to communicate using ments in dance and sign. Amoy also links other methods ...[The deaf] have the the political and cultural struggles of knowledge to communicate in other Most universities have yet the Deaf community to other resistance ways ...that may not be known to movements: to realize that Deaf people us ...Maybe that makes us hearing people the silent ones to them. If sign language is a recognized lan- are not a loosely knit guage, then why is it not imple- group of audiologically Youlla went on to illustrate her ideas by mented in our curriculum as other writing about two major characters in the impaired individuals, but languages are? So, society is overtly play: Sarah is a strong Deaf woman and disregarding another culture, as it are, rather, a linguistic and James, Sarah's hearing husband and a always does.. .society is not willing teacher at the school for the Deaf, tries to cultural minority whose to acknowledge subjects/people that teach Sarah to speak. Drawing on Friere's are different. complex history, language, discussion of the "deposits" made in banking education and hooks's discus- As the course continued, this acknowl-and literature warrant sion of colonized minds, Youlla writes: edgement of Deaf persons as culturalsustained recognition. subjects dovetailed with discussions James had a colonized mind ... about identity-formation within multiple James became fearful of Sarah's communities, including educational in-in the United States. In addition, hearing independence because what would stitutions such as the classroom and thestudents introduced to the relevant his- society think of a person who can- university where our discussions weretorical, political, and social issues sur- not overpower or as they would put taking place. Students began to see thatrounding Deaf culture are encouraged to it nicely, "help" a "disabled" per- the family is not the only site for theexpand and to challenge their existing ..And since society had thrust son? . transmission of cultural identity and thatnotions of multiculturalism, disability, upon him the idea that he had to take communities include, and are built from,and language. Such expansion of terms care of her. ...he thought that soci- our differences and multiple allegiances.becomes a useful means of developing a ety would think less of him because Including texts about Deaf culture in awider, more inclusive critical conscious- he would not be able to control his multicultural curriculum demonstrated toness among students and teachers whose "disabled" child. So because of that students that "culture" cannot be thoughtnotions of multiculturalism tend to over- feeling, James ended up turning a of monolithically only in terms of "race."determine race at the expense of other .. Heonly "dear ear to Sarah . This realization opened the way forsignificant and simultaneous sites of dif- thought of himself and his need for strong discussions of essays by Gloriaference. Such reciprocal benefits to the her to [talk]. He did not leave him- Anzaldda and Audre Lorde, in which theDeaf and hearing communities serve to self any room to empathize with writers resist bearing allegiance to oneemancipate both from oppressive mis- Sarah at all. community/self at the expense of an-conceptions about disability, language, In her paper, Youlla continued to con-other. In fact, students began to thinkand cultural identity. nect the inability to "hear" with the in-about Anzaldda's and Lorde's lesbianism ability to listen and to empathize in orderin terms of "culture" and "community" NOTE to argue that the dominant culture isand so, congruent with our discussions 'We use "Deaf," rather than "deaf," in of Deaf culture, began to move awayorder to distinguish between Deaf people "disabled" by its inability to listen to the who identify with Deaf culture and deaf "voices" of different communities. Byfrom a reductive pathologization of ho-people who do not. This distinction also creating the distinction between biologi- mosexuality. In later weeks, studentshelps to clarify the differences between cal and empathetic deafness, Youlla ar-continued to talk about the Deaf, gays, Deaf education (bilingual/bicultural educa- ticulated a convincing argument for de-lesbians, and virtually all American cul-tion) and deaf education (the historically pathologizing Deaf identity. tures and subjectivities as hybrid, multi- hearing-dominated forms of education based Clearly, discussing Deaf language and cultural identities and so began to linkon the medical view of deafness). 0

2 4 RADICAL TEACHER NUMBER 47 9 4 A Review of Deaf StudiesCurricula BY H. DIRKSEN L. BAUMAN

Teachers who wish to create multi- cultural reading lists for their courses may readily choose texts from Sative-American, African-American, or Asian-American writers. However, texts from Deaf Americans may not as immediately come to mind. The purpose of this review, then, is to provide teach- ers with an overview of curricular mate- rial which demonstrates the centrality rather than marginality of the cultural, political, and linguistic issues raised by Deaf studies. Next to guest lecturers, one of the most effective means for letting Deaf persons "speak" in a hearing classroom, is through the use of video-texts. Dawn Sign Press, for example, has begun to produce the ASL Literature Series. The first video features signed narratives by Deaf storytellers Ben Bahan and Sam Su-duced literature in written English thatedited by Jill Jepson, offers some of the palla. While the ASL Literature Series ischallenges normative ideas of culture,most accomplished writing from the Deaf not voice interpreted, a workbook ac-disability, and literature. The recentcommunity to date. While many authors companies the videotapes so as to makeEyes of Desire: A Deaf Gay and Lesbianin No Walls are not Deaf but deaP, some the narratives accessible to hearing au-Reader, edited by Raymond Luczak, is aDeaf authors have been included whose diences. Also, the San Francisco Publiccomplex, multicultural, heteroglossicwriting operates as a form of "resistance Library has produced a series of video-reader full of "critical fictions" whichliterature." Willy Conley's one-act play, tapes, American Culture: The Deaf Per-take the forms of fiction, poetry, creative"The Hearing Test," for example, dra- spective, which offer voice-interpretedessays, TTY phone conversations, lettersmatizes the medical establishment's re- interviews, discussions, and performancesin "Deaf English," interviews, photo-lentless pursuit to "cure" deafness. "The of plays and poems by Deaf performers.graphs, and personal narratives trans-Hearing Test" introduces the controver- The signed texts in both tapes explorelated from ASL These texts frequentlysial topic of the cochlear implant, a press- the dynamics of living in a hearing worldengage the emotional, social, and politi-ing issue for the Deaf community which that refuses to listen. cal issues involved in claiming hybridprovokes questions that most hearing Introducing students to the emergingidentities and developing multiple alle-students would not otherwise entertain: body of American Sign Language litera-giances through community and coali-Why wouldn't most Deaf persons want to ture can awaken important questions that tion building. This anthology encourages undergo surgery if they could improve would have lain dormant otherwise: Howreaders to raise a number of importanttheir hearing? Is the implant a medical does ASL literature challenge existing lit- questions: What paradigm may be usedadvancement or the latest manifestation erary conventions and genres? How arefor underrepresented groupslike theof the eugenics movement? What sort of these conventions linked to larger so-Deafto unite while still respecting var-information and images do hearing par- ciopolitical issues of power, knowledge,ious sites of difference? What sort ofents receive about Deaf culture? Why do and linguistic domination? How does the model may be used to express this flexi-parents fear "losing" a child to Deaf cul- visual body-text of ASL change the way ble, non-monolithic version of (Deaf) cul-ture? Why do so few hearing parents learn that we talk about a literary "text"? Theseture? How is resisting audism complicitASL? Conley's play and other poems and and other questions may encourage stu-(or not) with resisting homophobia narratives in No Walls of Stone all offer dents to make connections between lit-even within the Deaf community? ways that Deaf "voices" may be heard in erary and hegemonic practices. While not as diverse as Eyes of Desire, hearing classrooms. While exploring the creative field ofNo Walls of Stone: An Anthology of Litera- The contemporary issues in Eyes of video-texts, Deaf authors have also pro- ture by Deaf and Hard of Hearing Writers,Desire and No Walls of Stone contrast in NUMBER 47 RADICAL TEACHER 25 9 5 (188). While and Out-a class that encouragesstudents to ex-come from the Deaf student" interesting ways with Angels this is undoubtedly the case, hearingstu- Deaf Charactersamine the distribution of power within casts: An Anthology of dents and teachers may also engagein a in Literature, edited by 'frentBatson andeducational institutions. Reading such a reminder thatcritical examination of their ownpathol- Eugene Bergman. This collectionoffers a new book in a new field is a reclaiming history is at the heart of re-ogized notions about Deaf cultureso as nineteenth- and twentieth-centurycollec- minds from the such well-sistance and political self-recovery to liberate their own tion of deaf characters by chains that bind both the oppressedand known authors as Dickens,Thrgenev, de Another text which works to reclaim Deaf history and to define Deaf Culture isthe oppressor. Maupassant, Welty, and Malamud.As An- culture Padden and Humphries's Deaf in Amer- Including discussions of Deaf gels and Outcasts concludeswith a selec- hopefully be ica: Voices from a Culture, which offers ain the university setting will tion of Deaf writers, this text encourages rewrite the wide- solid overview of Deaf culture andhis-a productive means to readers to contrast hearing versionsof Deaf tory, revealing social mores and patternsspread misunderstandings of the deaf characters with autobiographical community. The more that discussions on of cultural transmission. In addition, Har- rather lan Lane's polemical The Mask of Benev-the Deaf are framed in a cultural within the olence is the first to benefit from Fou-than pathological perspective hear- One of the most effective cauldian historical analysis as it alignsuniversity, the more likely it is that ASL as a meats for letting Deaf the audist medical and education estab-ing persons will begin to accept of that lishments with the rise of other normal-legitimate language and the users persons "speak" in a mi- izing disciplinary institutions. Lane'slanguage as a legitimate linguistic students hearing classroom, is book is also one of the first to discuss thenority. At the same time, hearing to chal- through the use of oppression of the Deaf community as anand teachers may be encouraged issue of colonization. The Mask of Benev- lenge their own definitions oflanguage, end, we video-texts. olence leads students towards dialogueculture, and literature. In the Deaf stud- which could help define and widen per-find that the issues raised by ies are at the heart of developing atruly narratives of Deaf persons. In addition tospectives on colonization and on Deaf The history. Engaging these issues of Deaf(multi)cultural perspective. Angels and Outcasts, Brian Grant's BIBLIOGRAPHY Quiet Ear: Deafness in Literatureoffershistory raises valuable historiographical questions: What are the similarities be-American Culture: The Deaf Perspective. an even more extensive rangeof the use Videocassette. Producer San Francisco tween colonial and deaf education?How of cl/Deaf characters as symbols inliter- Public Library, 1984. ature. Although these selectionstend tois the history of the Deaf community par-ASL Literature Series. Videocassettewith be too short to sustain in-depthcritical in- Ben Bahan and Sam Supalla. Producer quiry, this text provides good materialfor Joe Dannis. Dir. James R. DeBee.Dawn curricular planning and furtherresearch.Introducing students to the Sign Press, 1994. eds. While these anthologies presentdi- Batson, Trent and Eugene Bergman, emerging body of American Angels and Outcasts: An Anthologyof verse literary voices, Deafstudies is also Deaf Characters in Literature. 3rded. producing scholarly texts thatexamineSign Language literature Deaf Washington, D.C: Gallaudet LT, 1985. the complexities of Deaf history. can awaken important Grant, Brian, comp. The Quiet Ear:Deaf- from History Unveiled: Interpretations ness in Literature. London: Andre Johnquestions that would have the New Scholarship, edited by Deutsch, 1987. Vickery Van Cleve, initiates a newlevellain dormant otherwise. Jepson, Jill, ed. No Walls of Stone:An An- of scholarship in the field of Deafhistory, thology of Literature by Deaf and Hard which, as the editor notes, "as recently as of Hearing Writers. WashingtonD.C., allel (and not) to that of other ethnic mi- the 1970s ...did not exist" (ix). This in- Gallaudet UP, 1992. ternational collection of essays rewritesnorities and immigrant communities?Lane, Harlan. The Mask of Benevolence. misunderstandings of Deaf history, re-What are potential strategies to enfran- New York: Alfred A Knopf, 1992. vealing the broad mechanisms ofaudistchise deaf education? Luczak, Raymond, ed. Eyes of Desire: A oppression which have operated for cen- While this last question is being dis- Deaf Gay and Lesbian Reader. Boston: cussed among Deaf activists, it may also Alyson Publications, 1993. turies under the guise of benevolent pa- Padden, Carol and Thm Humphries.Deaf ternalism. Susan Plann's essay,"Pedrobe asked of hearing students and teach- all to confront the in America: Voices from a Culture. Ponce de Leon: Myth and Reality,"for ex-ers so as to compel us political implications of pedagogical and Cambridge, MA: Harvard UP. 1988. ample, offers a new perspective onthe Van Cleve, John Vickery, ed. DeafHistory origins of deaf education byrecognizingcurricular issues. As editor of American Unveiled: Interpretations from the New the invaluable contributionsof DeafDeaf Culture: An Anthology, Sherman Wil- Scholarship. Washington, D.C.. Gal- readings on bilin- pupils to the history of deafeducation.cox assembles useful laudet, UP, 1993. Leakey's essay discusses how vo-gual and bicultural education as a meansWilcox, Sherman, ed. American DeafCul- MD: cational education has been usedin Deafof breaking what Friere calls the"cul- ture: An Anthology. Silver Spring, disen- Linstok Press, 1989. and African-Americancommunities as ature of silence" that surrounds upward mobility offranchised groups. Indeed, Wilcox notes NOTE means to limit the 1See the Note at the end of the articleby both minority groups. These andotherthat the "culture of silence must be bra ken from within and the first blow must Bauman and Drake in this issue- essays would be especiallyproductive in 96 RADICAL TEACHER NUMBER 47 A Review ofHarlan Lane's The Mask ofBenevolence: Disabling the DeafCommunity'

BY LENNARD J. DAVIS

exception Beginning on an anthropological note,logically, that the deaf are no The fact that I cannot write this re- wisdom and sees Lane examines lists of adjectives usedinto this generally held view in American Sign Language reluctance to teach the deafbilingually (An) tellingly reveals the com-the literature of colonization to describe Africans and shows how these sameas a sign of ethnocentrism."Residential plex imbalances in power facing deaf schools for deaf childrenmeted out se- Americans. Although the majority ofwords are now applied to deaf peopleby studyvere punishment forusing ASL, and in deaf people speak ASL, their language isthe hearing professionals who for Indians, them. As Lane says: "Like the paternal-federal boarding schools not widely known nor is it even accepted using Ameri- ism of the colonizers, hearing paternal-children were beaten for as a legitimate language by thehearing (116). ism begins with defective perception,be-can Indian languages" world. On the other hand, any deaf per- Lane helps us to realizethe especially andcause it superimposes itsimage of the son in this nation is expected to read complex social and culturalpositioning of speak English. Harlan Lane, in this im-familiar world of hearing people on the the deaf. Although a deafchild and a His- passioned and damning indictment ofunfamiliar world of deaf people" (37). "civ-panic child can becompared, there are the hearing establishment, demonstratesThe aim of these professionals is to ninety percent ilize" the deaf, as the colonists intendedcrucial differences, since the legitimacy of sign as a language and of deaf children are born tohearing par- stigma-to do with the natives, withoutrealizing urges us to see the deaf not as a ents. Lane says thatbeing deaf is like tized, medicalized, disabled category butthat the deaf have their own valuesand being gay, in this sense, since"most mem- as a linguistic sub-group within adomi-structures within their community. effectbers of the minority do notshare their mi- nant majority. Lane shows how this his- For Lane, much of this civilizing and can- is centered around the teaching oflan-nority identity with their parents tory of spurning the natural languageof (21). And he points guage. Although the bulkof work by deafnot develop it at home" the deaf in favor of a variety of other out that being deaf is notreally compa- schemes will always leave deaf peopleand hearing linguists indicatesthat the rable to being disabled,since the deaf, with an inferior education and a dubiousearlier a child acquires language thebet- learn sign-unlike the disabled, willinglysegregate social status. ter, and that deaf children can schools and ing much earlier than they can learn tothemselves into residential A current MacArthur Fellow and Uni- marriages to speak orally, the overwhelming effortinlater deaf communities and versity Distinguished Professor of psy- and culture. deaf education has been to avoid ASLTheshare their own language chology at Northeastern University, Har- In addition to being colonized,deafness lan Lane, himself hearing, has writteneducators favor teaching English, either "ritual signed versions of English syntax or spo-is medicalized in a Foucauldean extensively on the history of the deaf, in- similarity ken English, because they feel thechildof power." There is a chilling cluding such works as When the Mind the panoptic must grow up in a world that onlyspeaksbetween Foucault's vision of Hears and The Wild Boy of Aveyron. In penitentiary and a deaf child'ssession at The Mask of Benevolence, he now moves the national language. But Lane showsthat the audiologist: from history to the current moment. Thisthis system of teaching is a completefail- book is a strong polemic criticizing everyure, with only four percentof deaf grad- uates able to read complexsubject mat- The child is seated, wearing ear- aspect of the way the deaf communityis The ter. Despite the banning of ASLin much phones, in a small steel room. treated and educated by the hearing or, him of deaf education, the fact is that the stu- audiologist inspects and directs as he calls them, the"audist" world. .. dents who do best are the ten percentof through a large glass window . Lane's attack is political as well as acad- (and] gives instructions tothe child emic. Using Michel Foucault's work, hedeaf children born to deaf parents,that infancy. in the soundproof room.. ..What is describes the way deafness has been con-is, those who learned ASL from the Lane would like the hearing establish- important is the quantification, structed as a deviance, one that has be- process, the sentencingithas little come an object of surveillance and pun-ment to think of the deaf as abilingual community. Experts in education now predictive or practical value;neither ishment achieved through rituals of "totally" nor "profoundly" nor"se- control. Also using the work of Edwardwidely accept the idea that linguistic sub-groups like Hispanics will do better verely" deaf children canunder- Said, Lane sees the deaf community as stand normal speech, even with pow- colonized by the imperial forces of theif their native language istaught in erful hearing aids. hearing majority. school along with English. Lane argues, 27 NUMBER 47 RADICAL TEACHER 9 7 to Lane sees this ritual as another form ofdistraught hearing parents and desper-(4). According to Lane, a child's ability courtroom sentencing thatvexists largelyate deaf educators, together with patent-hear and speak are minimally improved, to perpetuate a certain socialorder" (25). owning companies. Lane describes, in aif at all, by such a difficult procedure. In- Even more disturbing in the process ofscene that makes medieval torture seemdeed, many teenagers who had cochlear medicalizing deafness is the rush to im-tame, how the surgeon saws and drillsimplants when they were younger refuse plant in deaf children electronic cochlearthrough the skull and finally snakes ato use the devices when they reach an age devicesbionic ears, in effect. These de-wire into the eat "The exquisitely detailedof independence. vices have not, according to Lane, beenmicrostructure of the inner ear is often Lane wants to see deaf people take con- sufficiently tested by theFDA,nor do theyripped apart as the electrode weaves itstrol of their lives instead of being sub- produce much more than vague soundsway, crushing cells and perforating mem-jected to the audist establishment. He advocates going back to the practice of in the ears of deaf children. Nonetheless,branes; if there was any residual hearing these devices are imposed on the deaf byin the ear, it is almost certainly destroyed" the nineteenth century when the major- ity of teachers of the deaf were deaf (ajournal of committed writing) themselves, as Helen Keller's teacher was herself blind. Deafpsychologists and linguists should be the ones to de- vise tests for deaf children, if such tests are even necessary, andthe hearing back issues world should relinquish its paternalistic control over the deaf. When the deaf "PC Wars" leader Jean-Francois Mercurio opened ns 39, Fall/Winter 1992/3 the International Conference on Sign Language in July 1990, he did so by smash- "The Politics of AIDS" ing a hearing aid with a sledgehammer, ns 40, Spring/Summer 1993 recognizing that the technology of "aud- ism" had become the symbolic chains of current issues the deaf. Certainly, one can legitimately argue "The Institution of Literature" with Lane that as Much as the deaf have their own community, they do have to i. States of Theory function in a hearing world. In Children of ns 41/42, 1994 a Lesser God, MarleeMaitland played a young woman who refuses tolearn to ii. From Literature to Culture speak, but who is then paradoxically de- ns 43/44, 1995 pendent on her hearing companion. Lane really does not address this issue and the iii. Institutional Questions book could be even more convincing if he ns 45, 1995/6 explained how in a deaf-centered educa- tional system speech would be dealt with. iv. The Politics of Publishing Having grown up in a deaf family, I found Lane's book to be an exciting break- ns 46, 1996 through. As a child, I had never thought with work by Crystal Bartolovich, Michael Bérubé, Don Biolostosky,Terry Caesar, Ross Chambers, Tom Cohen, Jennifer Cotter, Lennard Davis, Ortwinde Graef, E. of deafness as anything more than a Ann Kaplan, Amitava Kumar, Devoney Looser, Julian Markels,Stuart Moulthr op, problematic handicap. By theorizing deaf- Louise Mowder, Tom Moylon, Richard Ohmann, Marc Redfield,Bruce Robbins, Paul ness, and politicizing the issues,Lane has Smith, James Sosnoski, Veronica Stewart, Cheryl Torsney, PaulTrembath, Alan Wald, articulated a Means to empowerment. I Evan Watkins, Mas'ud Zavarzadeh, and many others read this book with the same thrill of recognition I felt when first reading other theorists of oppression in the realm of in planning class, nationality, race, and gender. Now progressives will have to add deafness to that list, as they understand that in ad- "Post-Whiteness" dition to the many screaming injustices Subscriptions: ns 47, 1996 the dominant culture has perpetrated, $12 Individual $24 Institutions there is another silent yet articulate one in its very midst. minnesota review is now published from: NOTE Department of English 'New York: Alfred A. Knopf, 1991, 241pp East Carolina University, Greenville, NC + notes. This review originally appearedin The Nation, July 6, 1992. 0 27858-4353 RADICAL TEACHER NUMBER 47 28 9 8 twitch and shout A documentary about tourettesyndrome produced and directed by laurel chiten

Tourette Syndrome (TS) is a genetic disorder that can cause a bizarre range of in- voluntary movements, ob- scene vocalizations and compulsions. Research has begun to unravel its secrets; . nonetheless, people with TS must con- badand a 5- tend with a society that often sees them as crazy or body and mind that won't do what it's told.

Twitch and Shout provides an intimate journey intothe world of Tourette Syndrome. Throughthe eyes of a photojournalist living with TS, we meet an artist, an actress,an NBA basketball player,and a Mennonite lumberjack. Their stories are unsettling,emotionally absorbing, and, perhaps most surprisingly, frequently funny.

";Twitch and Shout powmfully conveys the richness "A marvelously moving (and improbably funny) new and range of Tourette Syndrome, from the inside." documentary. " Dr. Oliver Sacks The New Yorker

"Twitch and Shout is a poweiful blend of drama, humor,and heart. It is a fascinating glimpse into the livesof people who must present a face to the world thatdoesn't always tally with their own sense of ser The Boston Globe Twitcb and Sbout has won numerous awards, including: Gold AppleNational Educational Media Network Best of Category WinnerGolden Gate AwardsCompetition, San Francisco Film Festival WorldFest Gold AwardCharleston International Film &Video Festival Outstanding Independent Video AwardNew EnglandFilm & Video Festival 59 Minutes Closed Captioned for Deaf and Hard of Hearing People Please send me copies of Twitch and Sbout at the following rate(please check one): ElNon-profit organizations: $125 0 Institutions: $300 (TSA Chapters, etc.) (Universities, Hospitals, etc.) Shipping & handling @ $10.00/tape $ 5% Sales Tax (MA only) Ship to: Total Mail this order form and your check or purchase order to: New Day Films 22 D Hollywood Avenue Phone Ho-ho-kus, NJ 07423 Fax: (201) 652-1973 Fax Phone: (201) 652-6590 29 NUMBER 47 RADICAL TEACHER 99 I AM NOT ONE OF THE

BY CHERYL MARIE WADE

I am not one of the physically challenged

I'm a sock in the eye with gnarled fist I'm a French kiss with cleft.tongue I'm orthopedic shoes sewn on a last of yourfears

I am not one of the differently abled

I'm an epitaph for a million imperfect babies leftuntreated I'm an ikon carved from bones in a mass grave atTiergarten, Germany I'm withered legs hidden with a blanket

I am not one of the able disabled vitt...-.

I'm a black panther with green eyes and scarslike a picket fence I'm pink lace panties teasing a stub of milkwhite thigh I'm the Evil Eye

I'm the first cell divided I'm mud that talks 4 I'm Eve I'm Kali I'm The Mountain That Never Moves 01992. BRENDA PRAGER I've been forever I'll be here forever I'm the Gimp I'm the Cripple I'm the Crazy Lady

I'm The Woman With Juice

Copyright 01987 by Cheryl Marie Wade. This poemis dedicated "to all my dis- abled sisters, to the activists in the streets and on the stages,to the millions of Sharon Kowalskis without a KarenThompson, to all my sisters and broth- ers in the pits, closets, and institutionsof enlightened societies everywhere." It originally appeared in Sinister Wisdom. 100

RADICAL TEACHER NUMBER 47 30 CRIPPLE LULLABYE

BY CHERYL MARIE WADE

I'm trickster coyote in a gnarly-bone suit I'm a fate worse than death in shit-kickin' boots

I'm the nightmare booga you flirt with in dreams 'Cause I emphatically demonstrate: It ain'twhat it seems

I'm a whisper, I'm a heartbeat, I'm "thataccident", and goodbye One thing I am not is a reason to die.

I'm homeless in the driveway of yourmanicured street I'm Evening Magazine's SuperCrip ofthe Week

I'm the girl in the doorway with no illusions to spare I'm a kid dosed on chemo, so who saidlife is fair

I'm a whisper, I'm a heartbeat, I'm "let's callit suicide",and a sigh One thing I am not is a reason to die.

I'm the poster child with doom-dipped eyes I'm the ancient remnant set adrift onice

I'm that Valley girl, you know, dying ofthin I'm all that is left of the Cheshire Cat's grin

I'm the Wheelchair Athlete, I'm everydead Baby Doe I'm Earth's last volcano, and I am ready toblow

I'm a whisper, I'm a heartbeat, I'm agenocide survivor, and Why? One thing I am not is a reason to die.

I am not a reason to die.

Reprinted from MOUTH! magazine.

101 31 NUMBER 47 RADICAL TEACHER Disability Studies Bibliography BY THE DISABILITY STUDIES PROJECT OFHUNTER COLLEGE

In general, books and articles were selected becausethey are based on a social/cultural/political model of disability.Other ref- erences were included which can be used as tools tofurther the understanding of how disability has beenrepresented in var- ious cultural products. These references were drawn from numerous sourcesand databases (e.g., social science, humanities, and education indexes). This April 1995 bibliography will continue to evolve and we welcome yourinput in developing it further. It is by no means an exhaustive list. Please send references to: The Disability Studies Project,Hunter College, 1016 West, 695 Park Avenue, New York NY 10021; phone 212-772-4723; fax 212-772-4941.

Ablon, J. (1984). Little People in America: Case of Learning Disability Theory." Amer- Berkowitz, E. D. (1991). America's Welfare The Social Dimensions of Dwarfism. New ican Journal of Sociology, 88, 948-974. State: From Roosevelt to Reagan. Balti- more, mD: Johns Hopkins UP. York: Praeger. Atkin, K. (1991). "Health, Illness, Disability Berkowitz, W. D. (1979). "The American Dis- Ablon, J. (1990). "Ambiguity and Difference: and Black Minorities: A Speculative Cri- ability System in Historical Perspective." Families with Dwarf Children." Social tique of Present Day Discourse." Disabil- In E. Berkowitz (Ed.), Disability Policies Science and Medicine, 30(8), 879-887. ity, Handicap and Society, 6(1), 37-47. and Government Programs. New York: ACEI Publications. (1993). Common Bonds: Baird, J. and Workman, D. (Eds.). (1986). Praeger. Anti-bias Teaching in a Diverse Society. Toward Solomon's Mountain: The Experi- ence of Disability in Poetry. Philadelphia: Berkson, G. (1970). "Defective Infant in a Wheaton, mD: ACEI Publications. Feral Monkey Group." Folia Primatology, Ainlay, S., Becker, G., and Coleman, L. M. Temple UP. Barker, J. C. (1990). "Between Humans and 12, 284-289. (Eds.). (1986). The Dilemma of Difference: Berkson, G. (1973). "Social Responses to Ab- A Multidisciplinary View of Stigma. New Ghost: The Decrepit Elderly in a Polyne- sian Society." In J. Sokolovsky (Ed.), The normal Infant Monkeys." American Jour- York: Plenum Press. Cultural Context of Aging. Westport: nal of Physical Anthropology, 38, 583-586. Albrecht, G. L. (1992). The Disability Busi- Bergin and Garvey. Best, E. (1905). "Maori Medical Lore." Jour- ness: Political Economy of Rehabilitation Barker, R. G. (1948). "The Social Psychology nal of the Polynesian Society, 14, 1-23. in America. Beverly Hills, CA: Sage of Physical Disability." The Journal of Best, E. (1906). "The Lore of the Whare Ko- Publications. Social Issues, 4(4), 28-38. hunga." Journal of the Polynesian Society, Albrecht, G. L., and Levy, J. A. (1984). " A So- Barnartt, S. and Christiansen, J. (1985). "The 15, 3-25. ciological Perspective of Physical Disabil- Socio-economic Status of Deaf Workers: A Biklen, D. (1986). "Framed: Journalism's ity." In J. L. Ruffini (Ed.), Advances in Med- Minority Group Perspective." Social Sci- Treatment of Disability." Social Policy, ical Social Science, (45-106). New York: ence Journal, 22(4), 19-32. 16(3), 45-51. Gordon and Breach Science Publishers. Barnartt, S. N., and Seelman, K. (1988). " A Biklen, D. (1987). "The culture of policy: Anspach, R. R. (1979). "From Stigma to Iden- Comparison of Federal Laws Toward Dis- Disability Images and their Analogues in tity Politics: Political Activism Among the abled and Racial/Ethnic Groups in the Public Policy." Policy Studies Journal, 15, Physically Disabled and Former Mental USA." Disability, Handicap and Society, 515-533. Patients." Social Science and Medicine, 3(1), 37-48. Biklen, D. (1988). "The Myth of Clinical 13A, 765-773. Bartoli, J. S. (1990). "On Defining Learning Judgement." Journal of Social Issues, Armstrong, M. J. (1989). "International Co- and Disability: Exploring the Ecology." 44(1), 511-521. operation in Rehabilitation: A Perspective Journal of Learning Disabilities, 23(10), Biklen, D. (1992). Schooling Without Labels: on United States Activity." Rehabilitation 628-631. Parents, Educators, and Inclusive Educa- Education, 3, 337-346. Baynton, D. C. (1992). "A Silent Exile on this tion. Philadelphia: Itmple UP. Asch, A. (1984) "The Experience of Disabil- Earth: The Metaphorical Construction of Biklen, D., and Bailey, L. (Eds.). (1981). ity." American Psychologist, 39(5), 529-536. Deafness in the Nineteenth Century." Rudely Stamp'd: Imaginal Disability and Asch, A. (1986). "Will Populism Empower the American Quarterly, 44(2), 216-243. Prejudice. Washington, DC: University Disabled?" Social Policy, 16(3), 12-18. Begum, N. (1992). "Disabled Women and the Press of America. Asch, A. and Fine, M. (1988). "Shared Feminist Agenda." Feminist Review, 40, Biklen, D., and Bogdan, R. (1977). "Media Dreams: A Left Perspective on Disability 3-6. Portrayals of Disabled People: A Study in Rights and Reproductive Rights." In M. Benedict, R. (Ed.). (1934). "Anthropology and Stereotypes." Interracial Books for Chil- Fine and A. Asch (Eds.), Women with Dis- the Abnormal." Journal of General Psy- dren Bulletin, 8.6 and 7, 4-7. abilities: Essays in Psychology, Culture chology, 10(2). Birdsell, J. D. (1972). Human Evolution: An and Politics (297-305). Philadelphia: Tem- Berkanovic, E. (1972). "Lay Conceptions of Introduction to the New Physical Anthro- ple UP. the Sick Role." Social Forces, 51, 53-64. pology. Chicago: Rand McNally. Asch, A. and Sacks, L. H. (1983A). "Lives Berkowitz, E. D. (1979). Disability Policies Blaxter, M. (1976). The Meaning of Disabil- Without, Lives Within: Autobiographies of and Government Programs. 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Radical Teacher seeks articles and prospectuses on: Privatizing Education

Has the movement for universal public education thatbegan 150 years ago been permanently reversed? How should radicals in education relate to privatizationefforts that abound now? They are diverse. Some corporations are running publicschools for profit or building for-profit schools in competition with public education. Others have long influencedit by providing "free" materials for use in public schools. Channel One now reaches millions ofkids in their classrooms. Corporations are spending more to educate their workers directly.Many states now have charter schools, runindependently by parents and teachers but with funding from public educationbudgets. There are alternative schools within city school systems, some with foundation support. There are streetacademies, fundamentalist schools, private schools to maintain segregation. Cutbacks in supportfor public universities drive them to seek more corporatefunds. Obviously, some of these movements express a right-wingassault on government, public education, teach- ers, integration, democracy. But somealso involve participation of teachers, parents, and studentsin shaping education. How do we distinguish left from right critiques ofpublic schooling? Has the rhetoric of multicul- turalism contributed to the evaporation of a liberal projectof common schooling? Do we need to support the liberal project? How do we make a radical critique of itwithout inadvertently doing the work of the right? Can we challenge privatization and still claim thatAmerican society is marked by fundamental divisions? How can we? For an issue of Radical Teacher we seek articles thatrespond to such questions, as well as case histories. For instance, of for-profit contracting, as in Hartford and Baltimore; of charter schools, New Vision schools, home schooling, etc.:what good and bad things are happening in these ventures? of corporate interventions in public schools, and ofprogressive resistance and organizing; of curriculum and preparation for testing in charterschools and home schooling: how much autonomy is there, really? of what is happening in and to universities as their workbecomes more entangled with corporate inter- ests and projects; of threats and opportunities in privatization for AfricanAmericans, Native Americans, and other groups. Send brief prospectuses, manuscripts, or correspondence to: Richard Ohmann Department of English Wesleyan University 1 0 3 Middletown, CT 06459-0100

NUMBER 47 RADICAL TEACHER 3 9 EC 3 OG 680 Of OF k U.S. DEPARTMENT OF EDUCATION Nt4r.& Office of Educational Research and Improvement (OERI) 4gt;.V.s7+1t4 Educational Resources Information Center (ERIC) cl 'AV. 4e. V

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