Why No One is Normal Anymore

 

Tomorrow morning I will give a talk at the University of Iowa’s Center for Disabilities and Development entitled “Why No One is Normal Anymore”. The event is designed for a broad audience but in especial I’m hoping for a group composed of people involved in medicine, nursing, social services and rehabilitation.

Like many faculty who have been involved in disability studies my background is in the humanities. Indeed, disability studies as a grassroots academic field of inquiry began within the humanities. The best definition of “dis studies” (in my opinion) is to be found in the Bedford Glossary of Literary Terms in an entry co-authored by two of the pre-eminent scholars in disability studies, Professor Brenda Brueggemann of The Ohio State University, and Professor Rosemarie Garland-Thomson of Emory University. They say (in part) that disability studies is:

“The study of disability in both literary criticism and the humanities in general is a grass-roots scholarly movement that has emerged from the academic turn toward identity studies, an awareness of the need for diversity in scholarly topics, and the recognition that disability is a political rights and integration issue. Disability studies in the humanities seeks to overturn the medicalized understanding of disability and to replace it with a social model of disability. This view defines “disability,” not as a physical defect inherent in bodies (just as gender is not simply a matter of genitals, nor race a matter of skin pigmentation), but rather as a way of interpreting human differences. In other words, this critical perspective considers “disability” as a way of thinking about bodies rather than as something that is wrong with bodies. Within such a critical frame, disability becomes a representational system more than a medical problem, a social construction rather than a personal misfortune or a bodily flaw, and a subject appropriate for wide-ranging intellectual inquiry instead of a specialized field within medicine, rehabilitation, or social work. Such a critical perspective extends the constructivist analysis that informs gender and race studies. This approach to disability looks at such issues as changes in the way disability is interpreted over time and within varying cultural contexts; the development of the disabled as a community and a social identity; the political and material circumstances resulting from this system of assigning value to bodies; the history of how disability influences and is influenced by the distribution of resources, power, and status; and how disability affects artistic production. It also insists on the materiality of the body–its embeddedness in the world–by focusing on issues such as equal access for all, integration of institutions, and the historical exclusion of people with disabilities from the public sphere.”

Often when I think about disability studies I’m reminded of the grassroots movements in higher education to understand the cultural experiences of women and the early momentum to establish African-American studies–both turns were prompted by the simultaneous matriculation of women and people of color in post-secondary study. This is the “grassroots” nature of academic inquiry for if the history of ideas is both a retrospective occupation it is simultaneously the assignment of of value in cultural capital. One can fashion a long and distinguished list of scholars who have brought wide-ranging critical inquiry to bear on the political, cultural, and material circumstances of women and blacks–studies that have shown how matters of gender and race are socially constructed to the disadvantage of individuals. For my money W.E. Dubois’ “The Souls of Black Folk” is one of the pillars of the turn to identity studies for it brought forward the very first constructivist analysis of race to explore the materiality of race as a social construction. Liberation is the incitement for a field of study and when understood as a matter of political rights it is remarkable to see it unfolding. The list of scholars whose works have been influential in this turn is now a long one.

Some twenty years after the passage of the Americans with Disabilities Act we now behold a generation of scholars in dozens of fields and from many continents who are devoted to broadening our understanding of disability.  Here is the announcement of my talk. Below I am featuring a partial bibliography for those who are interested in disability studies.

 

S.K.

 

  

Center for Disabilities and Development

GRAND ROUNDS                  

University of Iowa

Center for Disabilities and Development

GRAND ROUNDS                  

“Why No One is Normal Anymore:

An Introduction to Disability Studies”

Presenter: Professor Steve Kuusisto, UI Graduate Program in Creative Nonfiction Writing, UI Carver College of Medicine

Professor Steve Kuusisto will give a talk on the emerging inter-disciplinary field of Disability Studies. Attendees will be introduced to the following concepts:

· A brief history of the term disability

· How the medical model of disability and the social model of disability are defined and studied by contemporary scholars

· Resources and publications in disability studies

· Ample opportunity for dialogue and Q and A with Professor Kuusisto

8:00 – 9:00 am, Friday, October 2, 2009

Room 102 Center for Disabilities and Development

¨ The seminar will be of particular interest and value to health care professionals including physicians, nurses, social workers, nutritionists, psychologists, and therapists.

¨ CME Accreditation: The University of Iowa Roy J. and Lucille A Carver College of Medicine is accredited by the Accreditation Council for Continuing Medical Education to provide continuing medical education for physicians.

¨ CME Credit Designation: The UI Carver College of Medicine designates each program in this education activity for a maximum of 1 category 1 credit towards the AMA Physician’s Recognition Award.  Each physician should claim only those credits that he/she actually spent in the education activity.

¨ Everyone in a position to control the content of this educational activity will disclose to the CME provider and to attendees all relevant financial relationships with any commercial interest.  They will also disclose if any pharmaceuticals or medical procedures and devices discussed are investigational or unapproved for use by the U.S. Food and Drug Administration (FDA).

For more information, contact Brenda Nosbish, 353-6008, brenda-nosbish@uiowa.edu

 

Partial Bibliography:

 

First, a bibliography on women and girls with disabilities prepared by Harilyn Rousso, a noted feminist and dis-studies scholar and activist:

 

Abu-Habib, L. 1997. Gender and Disability. Women’s Experiences in the Middle East. UK and Ireland: Oxfam

Asch, A. with Rousso, H. & Jefferies, T. 2001. Beyond pedestals. The lives of girls and women with disabilities. In Rousso, H. & Wehmeyer, M., Eds. Double jeopardy: Addressing gender issues in special education. Albany, NY: SUNY Press.

Axtell, S. (1999). Disability and Chronic Illness Identity: Interviews with

lesbians and bisexual women and their partners. Journal of Gay, Lesbian and

Bisexual Identity, 4(1), 53 72.

Berkeley Planning Associates. 1996. Including girls with disabilities in youth programs. Part of the larger project, Meeting the needs of women with disabilities: A blueprint for change. Oakland, CA: Author.

Boylan, E., Ed. 1991. Women and Disability. Atlantic
Highlands, NJ: Zed Books Ltd
.

Browne, S., Donnors, D. & Stern, N. 1985. With the Power of Each Breath. A Disabled Women’s Anthology. Pittsburgh: Cleis Press

Brownworth, V. and Raffo, S. (Eds.). Restricted Access: Lesbians on Disability

Seattle: Seal Press.

Campling, J., Ed. 1981. Images of Ourselves. Women with Disabilities Talking. London: Routledge and Kegan Paul Ltd.

Chenoweth. L. and Cook, Sandy., Eds. 2001. Violence against women with disabilities. A special issue of Violence Against Women. 7, 4.

Clare, E. 1999. Exile and Pride. Disability, Queerness and Liberation. Cambridge, MA: South End Press.

DePauw, K. 1997. Sport and physical activity in the life-cycle of girls and women with disabilities. Women in Sport & Physical Activity Journal. 6: 225-237.

Dibernard, B. 1996. Teaching what I’m not: An able-bodied woman teaches literature by women with disabilities. In Mayberry, K. J., Ed. Teaching What You Are Not. Identity Politics in Higher Education. New York: New York University Press, pp. 131-54.

Disabled People’s International & Interessenvertretung Selbstbestimmt Leben. 1998. European conference for disabled women. Self-determined living for disabled women in Europe. Munich 15-18, 1996. (Conference Proceedings). Author.

Doe, T. 2003. Reworking benefits: Continuation of non-cash benefits for single mothers and disabled women. Canada: Status of Women Canada

Doe, T. & Kimpson, S. 1998. Enabling Income: Women with disabilities and the CPP disability benefits. Final Report. Canada: Status of Women Canada, 1998

Doren, B. & Benz, M. 2001. Gender equity issues in the vocational and transition services and employment outcomes experienced by young women with disabilities. In Rousso, H. & Wehmeyer, M., Eds. Double jeopardy: Addressing gender issues in special education. Albany, NY: SUNY Press.

Doucette, J. 1986. Violent acts against disabled women. Toronto, ON: DAWN (DisAbled Women’s Network) Canada.

Drieger, D., Feika, I., & Giron Batres, E., Eds. 1996. Across Borders. Women with Disabilities Working Together. Canada: Gynergy Books.

Driedger, D. & Gray, S., Eds. 1992. Imprinting Our Image: An International Anthology by Women with Disabilities. Canada: Gynergy Books.

Duncan B. & Berman-Bieler, R., eds. 1998. International leadership forum for women with disabilities. New York, NY: Rehabilitation International

Educational Equity Concepts, Inc. 1993. A report on women with disabilities in postsecondary education. Issue Paper Number 1.

Epstein, S. 1997. We can make it: Stories of disabled women in developing countries. ILO.

Fiduccia, B. W. and Wolfe, L. R. 1999. Women and girls with disabilities: Defining the issues – An overview. Washington, DC: Center for Women Policy Studies.

Fine, M. & Asch, A. Eds. 1988. Women with disabilities: Essays in psychology, culture and politics. Philadelphia: Temple University Press.

Finger, A. 1990. Past Due. A Story of Disability, Pregnancy and Birth. Seattle, WA: Seal Press.

Fries, K., Ed. 1997. Staring Back. The Disability Experience from the Inside Out. New York: Plume

Froschl, M. Rousso, H. & Rubin, E. 2001.. Nothing to do after school: More of an issue for girls. In Rousso, H. & Wehmeyer, M., Eds. Double jeopardy: Addressing gender issues in special education. Albany, NY: SUNY Press.

Froschl, M., Rubin, E. & Sprung, B. November, 1999. Connecting gender and disability. WEEA Equity Resource Center Digest, pp. 1-2.

Garland Thomson, R. 2002. Integrating disability, transforming feminist theory. NWSA Journal, 14, 3, pp. 1-32

__________ 2001. Re-Shaping, re-thinking, re-defining: Feminist disability studies. Washington, DC: Center for Women Policy Studies.

__________ 1997. Disabled women as powerful women in Petry, Morrison and Lorde: Revising Black female Subjectivity. In Mitchell, D. T., & Snyder, S. L., The Body and Physical Difference. Discourses of Disability. Ann Arbor: University of Michigan Press

_________ 1997. Extraordinary Bodies. Figuring Physical Disability in American Culture and Disability. New York: Columbia University Press. Especially chapter 1, Disability, Representation, Identity.

Galler, Roberta. 1984. The myth of the perfect body. In C. Vance, ed., Pleasure and Danger: Exploring Female Sexuality. Boston: Kegan Paul, 1984. pp. 165-172.

Gill, C., Kirschner, K, & Panko Reis, J. 1994. Health services for women with disabilities: Barriers and portals. In Dan, A., Ed., Reframing women’s health. Multidisciplinary research and practice. Thousand Oaks, CA: Sage Publications, pp. 357-66.

Grandin, T. 1996. Thinking in Pictures and Other Reports from My Life with Autism. New York: Vantage Books.

Grealy, L. 1994. Autobiography of a Face. New York: Houghton Mifflin

Groce, N.E. 1997. Women with disabilities in the developing world. Journal of Disability Policy Studies, 8, 1&2:177-93

Hall, K. Q., Ed.. 2002. Special Issue: Feminist Disability Studies. NWSA Journal 14, 3.

Hannaford, S. 1985. Living outside inside. A disabled woman’s experience. Towards a social and political perspective. Berkeley, CA: Canterbury Press.

Heppner, C. 1992. Seeds of disquiet: One deaf woman’s experience. Washington, DC: Gallaudet University Press

Hershey, L. 2003. Caregiver advocates miss the point. Off Our Backs. 33, 1-2, pp. 31-32

__________ 2003. Disabled women organize worldwide. Off Our Backs. 33, 1-2, pp. 16-18.

__________ 1995. False Advertising (article critiquing charity advertisers’ portrayal of disabled women). Ms. Magazine, March, ‘95

Heumann, J. 1992. Growing up. Creating a movement together. In Driedger D. & Gray, S., Eds. Imprinting Our Image. An International Anthology by Women with Disabilities. Canada: Gynergy.

Jans, L. & Stoddard, S. 1999 Chartbook on women and disability in the United States. An InfoUse Report. Washington, DC: US Department of Education, National Institute on Disability and Rehabilitation Research.

Keith, L. 1996. What Happened to You? Writings by Disabled Women. New York: New Press.

Kent, D. 1999. Coming to terms. Women’s Review of Books, XVI, 8:10.

__________ 1988. In search of a heroine: Images of women with disabilities in fiction and drama. In Fine, M., & Asch, A. Eds., Women with Disabilities: Essays in Psychology, Culture and Politics. Philadelphia, PA: Temple University Press

Kirshbaum, M., & Olkin, R. (2002). Parents with physical, systemic, or visual disabilities. Sexuality and Disability, 20(1).

Kittay, E., Schriemb, A., Silvers, A. & Wendell, S., Eds. 2002. Hypatia. Special Issue: Disability and Feminism II. 17, 3, Summer, 2002.

__________ 2001. Hypatia. Special Issue: Disability and Feminism I. 16, 4, Fall 2001.

Kleege. G. 2000. Helen Keller and the empire of the normal. American Quarterly, 52, 2, 322-25.

__________1999. Sight Unseen. New Haven, CT: Yale University Press.

Klein, B. 1997. Slow dance: A story of stroke, love and disability. Berkeley: Pagemill/Circulus Publishing.

Krotoski, D. M., Nosek, M. & Turk, M. A. 1996. Women with physical disabilities. Achieving and maintaining health and well-being. Baltimore, MD: Paul H. Brookes

Ladouceur, B. & and Doe, T. 1993. To be or not to be: Whose question is it anyway? Canada Women Studies, Summer.

Lee, J. & White, S. 1999. Economic self sufficiency of women with disabilities International Rehabilitation Review. 49, 1-2:22-23.

Lewis, C., Sygall, S. & Crawford, J., Eds. 2002. Loud, proud and passionate: Including women with disabilities in international development programs. Eugene: Mobility International USA.

Linn, E. & Rousso,

H. 2001. Stopping sexual harassment in schools. In Rousso, H. & Wehmeyer, M., Eds. Double jeopardy: Addressing gender issues in special education. Albany, NY: SUNY Press.

Linton, S. 1998. Claiming Disability. Knowledge and Identity. New York: NYU Press

Lonsdale, S. 1990. Women and disability. The experience of physical disability among women. New York, NY: St. Martin’s Press.

Luczak, R. Ed. 1993. A Deaf Gay and Lesbian Reader. Boston: Alyson Publications.

Mairs, N. 1996. Waist-High in the world: A life among the nondisabled. Boston, MA: Beacon Press.

__________ 1985. Plaintext. Tucson: University of Arizona Press.

Matthews, G. F. 1983. Voices from the shadows: Women with disabilities speak out. Toronto: Women’s Educational Press.

McBryde Johnson, H. 2003. Unspeakable conversations or how I spent a day as a token cripple at Princeton University. The New York Times Magazine, February 16, 2003. 50-55.

Morris, J. 1991. Pride against prejudice. Transforming attitudes to disability. Philadelphia, PA: New Society Publishers.

__________1989. Able lives: Women’s experience of paralysis. London: The Women’s Press.

Muccigrosso, L., Scavarda, M., Simpson-Brown, R., & Thalacker, B. E. 1991. Double jeopardy: Pregnant and parenting youth in special education. Reston, VA: Council for Exceptional Children

Murdock, N. 1988. Disabled women and public policies for income. Women with Disabilities: Essays in Psychology, Culture and Politics. Philadelphia, PA: Temple University Press

Neumark-Sztainer, D., Story, M., Toporoff, E., Cassuto, N., Resnick, M.D., & Blum, R.W 1996. Psychosocial predictors of binge eating and purging behaviors among adolescents with and without diabetes mellitus. Journal of Adolescent Health, 19, pp. 289-296.

Neumark-Sztainer, D., Story, M., Resnick, M.D., Garwick, A., Blum, R.W. 1995. Body dissatisfaction and unhealthy weight control practices among adolescents with and without chronic illness: A population-based study. The Archives of Pediatric & Adolescent Medicine, 149, pp. 1330-1335.

Ngai, K. Survey on women with disabilities in Hong Kong. International Rehabilitation Review. 49, 1-2. June, 1999, p. 26.

Nosek, M.A. 1997. National study of women with physical disabilities. Houston: National Center for Research on Women with Disabilities

Nosek, M. A., Young, M. A., Rintala, D. H., Howland, C.A., Foley, C.C., & Bennett, J. L.. 1995. Barriers to reproductive health maintenance among women with physical disabilities. Journal or Women’s Health. 4, 5, pp. 505-18.

Off Our Backs 2002; 2003). Nos. 11-12 of Vol. 32 (Nov./Dec.) and Nos. 1-2 of Vol. 33 both contain special sections on women with disabilities.

O’Toole, C. J. 2002. Sex, disability and motherhood: Access to sexuality for disabled mothers. Disability Studies Quarterly, Fall 2002, 22(4), 81-101.

O’Toole, C. J. & Brown, A. 2003. No Reflection in the Mirror: Challenges for

Disabled Lesbians Accessing Mental Health Services. Journal of Lesbian

Studies, Vol 7, No. 1, 35-49.

O’Toole, C. J. & D’aoust, V. (2000) Fit for motherhood: Towards a recognition of multiplicity in disabled lesbian mothers. Disability Studies Quarterly, Spring 2000, 20(2), 145-154.

O’Toole, C .J & Doe, T. 2002. Sexuality and disabled parents with disabled children. Sexuality and Disability. Spring 2002, 20(1), 89-102.

Panzarino, C. 1994. The Me in the Mirror. Seattle, WA: Seal Press.

Parens, E. & Asch, A., Eds. 2000. Prenatal Testing and Disability Rights. Washington, DC: Georgetown University Press.

Perkins, T. with Rubin, E., Froschl, M. and Sprung, B. 2001. Building community: A manual exploring issues of women and disability. Revised Edition. New York: Educational Equity Concepts

Raye, K. n.d. Violence, Women and mental disability: Human rights abuses perpetrated against women with mental disabilities. A paper prepared for Mental Disability Rights International.

Rousso, H. 2001. Strong proud sisters: Girls and young women with disabilities. Washington, DC: Center for Women Policy Studies.

__________ 2001. What do Frida Kahlo, Wilma Mankiller and Harriet Tubman have in common? Providing role models for girls with (and without) disabilities. In Rousso, H. & Wehmeyer, M., Eds. Double jeopardy: Addressing gender issues in special education. Albany, NY: SUNY Press.

__________ 2000. Girls and Women with Disabilities: An international overview and summary of research. Oakland, CA: World Institute on Disability; and New York, NY: Rehabilitation International.

__________1988. Daughters with disabilities: Defective women or minority women? In. M. Fine and A. Asch, Eds. Women with disabilities: Essays in psychology, culture and politics. Pp. 139-171. Philadelphia: Temple University Press.

Rousso, H. & Wehmeyer, M. 2002. Gender matters. Training for educators working with students with disabilities. Newton, MA: WEEA Equity Resource Center/Education Development Center

__________ Eds. 2001. Double jeopardy: Addressing gender issues in special education. Albany, NY: SUNY Press

Russo, N. and Jansen, M. 1988. Women, work and disability: Opportunities and challenges. In Fine, M. and Asch, A., Eds., Women with Disabilities: Essays in Psychology, Culture and Politics. Philadelphia, PA: Temple University Press.

Saxton, M. 1998. “Disability Rights and Selective Abortion,” in Ricky Solinger, Abortion Wars: a Half Century of Struggle (1950-2000). University of California Press. pp. 374-393

Saxton, M. & Howe, F., Eds. 1987. With Wings. An Anthology of Literature by and About Women with Disabilities. New York, NY: The Feminist Press

Shakespeare, T., Gillespie-Sells, K. & Davies, Dominic. 1996. The Sexual Politics of Disability. Untold Desires. New York & London: Cassell

Shapland, C. 1999. Sexuality issues for youth with disabilities and chronic health conditions. An occasional policy brief of the Institute for Child Health Policy, Gainesville, FL

Sherer Jacobson, D. 1999. The Question of David. A Disabled Mother’s Journey Through Adoption, Family and Life. Berkeley: Creative Arts Book Co.

SinisterWisdom. Winter 1989-90. On Disability. Vol. 39. Entire volume.

Snyder, S., Brueggemann, B. & Garland Thomson, R., Eds. 2002. Disability Studies: Enabling the Humanities. New York: MLA of America.

Sobsey, D. 1994. Violence and abuse in the lives of people with disabilities. The end of silent acceptance? Baltimore: Paul H. Brookes.

Stewart, J. 1989. The Body’s Memory. New York, NY: St. Martin’s Press.

Stimpson, L. & Best, M.C. 1991. Courage above all: Sexual assault against women with disabilities. Toronto, ON: DAWN (DisAbled Women’s Network) Canada.

Thierry, J. M. 1998. Observations from the CDC. Promoting the health and wellness of women with disabilities. Journal of Women’s Health. 7, 505-507

Thomas, C. 1999. Female forms: Experiencing and understanding disability. Philadelphia: Open University Press.

Traustadottir, R. 1990. Women with disabilities: Issues, resources, connections. Syracuse, NY: The Center on Human Policy, Syracuse University.

Wagner, M. 1992. Being female – A secondary disability? Gender differences in the transition experiences of young people with disabilities. 1992. Menlo Park, CA: SRI International.

Wahl, E. 2001. Can she really do science? Gender disparities in math and science education. . In Rousso, H. & Wehmeyer, M., Eds. Double jeopardy: Addressing gender issues in special education. Albany, NY: SUNY Press

Walsh, P. N. & Heller, T., Eds. 2002. Health of Women with Intellectual Disabilities. Okford, UK: Blackwell Publishing.

Wates, M. & Jade, R. Eds. 1999. Bigger Than the S
ky. Disabled Women on Parenting. London: The Women’s Press

Watson, N., Shakespeare, T., Cunningham-Burley, S., & Barnes, C., with Corker, M., Davis, J., & Priestley. 1999. Life as a disabled child: A qualitative study of young people’s experiences and perspectives. Unpublished paper.

Wehmeyer, M.L. & Schwartz, M. 2001. Research on gender bias in special education services. In Rousso, H. & Wehmeyer, M., Eds. Double jeopardy: Addressing gender issues in special education. Albany, NY: SUNY Press.

Wendell, S. 1996. The rejected body. Feminist philosophical reflections on disability. NY: Routledge

Willmuth, M. & Holcomb, L., Eds. 1993. Women with Disabilities: Found Voices. Binghamton, NY: Harrington Park Press.

Women in Action. 2001. Theme for issue 2, 2001: Women and disabilities (www.isiswomen.org/pub/wia/wia201/)

Women with Disabilities Australia (WWDA). 1998. Women with disabilities and violence. Information kit. Australia: Author.

Websites (A beginning list)

http://www.cripcommentary.com – Crip Commentary – Online column on disability rights written by disabled feminist Laura Hershey

http://www.bcm.tmc.edu/crowd/ – CROWD (Center for Research on Women with Disabilities), based at the Baylor College of Medicine/Department of Physical Medicine and Rehabilitation. Engaged in a range of research on women with physical disabilities.

http://dawn.thot.net – DAWN – Canadian-based activist organization of women with disabilities.

www.disabilityworld.org – DisabilityWorld online. International e-zine that includes regular coverage on women

www.disabledwomen.net – Disabled Women on the Net – still under construction but has some useful resources

www.miusa.org/intdev/publications.htm/ – Mobility International USA resources on disabled women and development

www.gimpgirl.com – Queer Ladies, Girlies and Queer

www.disabledwomen.net/queer – Queer disability

www.ragged-edge-mag.com – Ragged Edge, an activist disability e-zine

www.lookingglass.org – Through the Looking Glass website, a resource on mothers/parents with disabilities

www.edfwomen.org.uk – UK Disability Forum Women’s Committee

www.disabilitystudies.com/feminism.htm – Whirlwind Wheelchair International Disability and Feminism Resource page

www.wwda.org.au – Women with Disabilities Australia. Winner of the National

Human Rights Award December 2001 and Winner of the National Violence Prevention Award 1999.

 

Some Further Reading:

http://www.disstudies.org/

http://disabilitystudies.syr.edu/resources/bibliography.aspx

 

S.K.