Spotlight Shines on U.S. Women with Disabilities
By Corbett J. O'Toole (Corbett@disabledwomen.net)
2002 was a good year for disabled women leaders in the U.S. Judith Heumann was appointed as the Adviser on Disability and Development, in the Human Development Network at the World Bank. Harilyn Rousso was named one of the 10 most important women in the U.S. by the National Women's History Project. Judi Rogers received the Robert Wood Johnson Community Health Leadership Program award.
JUDI ROGERS, O.T.R.
Rogers began her career as an Occupational Therapist, not an easy career choice for a woman with cerebral palsy in the United States in the 1970's. She was determined to become a professional so that she could assist other people with disabilities. She also wanted to be a health care role model to both disabled and non-disabled people.
When she became pregnant in the early 1970's she and her physician husband looked for information about pregnancy, labor and delivery for women with cerebral palsy. They discovered that there was no pregnancy information for women with any kind of physical disabilities. After her second child, Rogers began to outline a book to change this situation. Currently in its second revision, "Mother to Be: A Guide to Pregnancy and Birth for Women with Disabilities " is still the only in-depth work on pregnancy, labor and delivery for women with disabilities.
The book led Rogers to work with parents both during pregnancy and after. She discovered that disabled women have specific, often short-term, needs that are largely ignored. Many women, she found, need to learn new ways of performing daily tasks while they are pregnant or carrying a new baby. How does a woman who uses a manual wheelchair safely transport a newborn, Rogers wondered. With over 8 million disabled parents of children under age 18 in the U.S. alone, there was a huge need for this knowledge. So she began asking every disabled mother she knew, and a few she didn't know. She still stops strangers (disabled parents) in the streets to ask them about their strategies.
By 1990 Rogers focused this encyclopedic knowledge into publications with Through the Looking Glass, a Berkeley, California based organization that serves as a national resource on parenting with a disability. She began to analyze the specific steps involved in competent babycare (e.g., diapering, feeding, bathing, transporting, etc). She found that many otherwise competent disabled adults had great difficulty with babycare tasks because they had only seen non-disabled people perform those tasks. So she and her colleagues at Through the Looking Glass began to videotape disabled parents performing babycare tasks. Rogers found that it is critical for disabled adults to have a "visual history" of how people who move like them perform basic babycare tasks. With this simple assistance (being shown how other people with disabilities do it), disabled parents are able to provide safe, competent care to their babies and young children. She now provides training and technical assistance to disabled parents, prospective parents and professionals around the world.
In 1996 Rogers discovered a cancerous lump in her breast. After her mastectomy Rogers sought out information about how other women with disabilities dealt with the medical aspects of cancer. To her dismay, she found little information. As is her style, this launched a new project for Rogers - that of bridging the gap between disabled people and cancer specialists. She began the Breast Health Access for Women with Disabilities project. This project provides one-to-one education and training for women with disabilities in breast self-examination, mammograms and health education.
For over 30 years Rogers has led the way for people with disabilities, particularly women with disabilities, in health education and empowerment.
HARILYN ROUSSO
In the U.S. every March we celebrate Women's History Month. Specifically aimed at educating America's schoolchildren, the National Women's History Project (www.nwhp.org) sends out millions of information packets focusing each year on 10 exemplary women. For 2003 they chose Harilyn Rousso as one of those women. In their initial press release they state:
"This year, as we strive to do every year, the NWHP has selected women exemplary of the many women who inspire us. We are honored to introduce these women who serve as role models in pioneering our future by wholeheartedly meeting challenges in their present."
"Harilyn Rousso (b. 1946)
Disability Rights Activist and Psychotherapist
For over 20 years, she has worked as an educator, social worker, psychotherapist and pioneering activist in the disability rights field, with an emphasis on issues of women and girls with disabilities."
Harilyn Rousso is an educator, psychotherapist and disabled women's leader. Early in her career she decided to become a psychotherapist. Unfortunately her professors did not believe that a woman with cerebral palsy could be successful in that career and refused her training. Rousso says that was a turning point in her life. Raised in a family that supported her dreams, Rousso was determined to receive psychotherapy training in spite of the obstacles. She went to another training institute and became a licensed therapist.
Rousso soon realized that the obstacles she faced were present in all aspects of society. She decided that it was important to prepare young disabled women with skills and resources needed for fulfilling their dreams. In the 1980's she began the Networking Project for Disabled Women and Girls and based it at the New York City YWCA (Young Women's Christian Association). Bringing this project into a mainstream organization meant that the young disabled women had access to a broad range of opportunities and also that the YWCA had access to motivated young disabled women.
This strategy of building bridges between disabled and non-disabled people is a hallmark of Rousso's work. By the late 1980's Rousso had co-edited a collection of disabled women's experiences, "Disabled, Female, and Proud: Stories of Ten Women with Disabilities" and made a film, "Positive Images: Portraits of Women with Disabilities."
Since then her work has branched in three main directions: young disabled women, psychotherapy, and artist. She continues to be a tireless advocate for disabled girls and young women writing countless articles, pressuring women's foundations to include disabled women and girls. She recently co-authored "Double Jeopardy: Addressing Gender Equity in Special Education" as well as writing "Strong Proud Sisters: Girls and Young Women with Disabilities." She was pivotal in organizing the Beijing +5 trainings for disabled women, which built on the work she did at the United Nations Fourth International Conference on Women. Rousso has served on the boards of major U.S. organizations including the Ms. Foundation, Center for Women Policy Studies, and the Sister Fund among others. In 2000 she received the Jessie Bernard Wise Women Award from U.S. organizations including the Ms. Foundation and Women's Policy Center in Washngton, D.C.
Since 1997 Rousso has combined her artistic work with her writings, finding new ways to inform and enhance images of disability. Her powerful work uses brilliant colors and deep strokes to create pictures brimming with vitality and joy. Her work is shown in both solo and group art shows as well as on the internet.
Rousso is a wonderful representation of the breadth of disabled women's lives. We are lucky that she was chosen by the National Women's History Project to be the first member of the disabled women's community. Students across America will be able to get a first-hand look at one of our most accomplished, and often overlooked, leaders.
RODGERS RESOURCES
"Mother to Be: A Guide to Pregnancy and Birth for Women with Disabilities" by Judith Rogers and Molleen Matsumura, 1991: Demos Publishing. http://www.demosmedpub.com/book25.html
Through the Looking Glass, 198 Sixth Street, Suite 100, Berkeley, CA 94710-2204, Tel: 1-800-644-2666 (voice), TTY: 1-800-804-1616, Fax: (510) 848-4445 http://www.lookingglass.org
Breast Health Access for Women with Disabilities (BHAWD) c/o Alta Bates Summit Medical Center, Herrick Campus, Rehabilitation Services, 2001 Dwight Way, 2nd Floor.
Berkeley, CA 94704 Tel: 1.510.204.4866 TDD 1.510. 204.4574 Fax: 1.510.204.5892. http://www.bhawd.org/
ROUSSO RESOURCES
Angela Perez Center for People with Disabilities (Formerly Networking Project for Young Adults with Disabilities), YWCA of the City of New York, 610 Lexington Avenue, New York, NY 10022 tel: 1.212.735.9766. email: lloonie@ywcanyc.org
"Birth, Mine" by Harilyn Rousso (text and illustrations) http://www.ducts.org/06_00/memoir/memoir_birthmine.html
Disabled, Female, & Proud! Stories of 10 Women with Disabilities by Harilyn Rousso, Susan G. O'Malley, Mary Severance,1993: Greenwood Publishing Group
"Girls & Women with Disabilities: an international overview and summary of research," February 2000 by Harilyn Rousso for Beijing +5 training workshop, available from the World Institute on Disability. Contact: jennifer@wid.org
Double Jeopardy: Addressing Gender Equity in Special Education (co-edited with Michael L. Wehmeyer), 2002: SUNY Press (http://www.sunypress.edu/details.asp?id=60409)
Positive Images: Portraits of Women with Disabilities. A film by Harilyn Rousso & Julie Hamilton. Available from Women Make Movies (http://www.wmm.com/catalog/pages/c130.htm)
Strong Proud Sisters: Girls and Young Women with Disabilities by Harilyn Rousso. 2001: Center for Women's Policy Studies, Washington, D.C. (http://www.centerwomenpolicy.org/reportscategory.cfm?ProgramID=9)
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