Document 76: "Disabled Women," in Susanna Downie, Decade of Achievement: 1977-1987: A Report on a Survey Based on the National Plan of Action for Women (Washington, D.C.: National Women's Conference Committee, 1988), pp. 25-27.
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DISABLED WOMEN
NATIONAL PLAN GOALS
•access to education, training and employment based on the real needs of disabled women •development of service programs controlled by disabled people •training and research programs focused on the health needs of the disabled •Medicaid and Medicare coverage for services and supplies needed by the disabled •Title XX funds for attendant care •include disabled women under the 1964 Civil Rights Act •equal rights to have, keep, or adopt children •legislation, funds and services to make independent living a reality for disabled women.
Although women with disabilities as a group are not much better off in 1987 than they were in 1977, there are many good programs that have sprung up in the last ten years around the country, public consciousness about the needs of disabled people has improved a little, disabled women's issues are beginning to be included in general information on women's issues, and there has been an increasing amount of organizing by the women themselves, across disabilities.
SOME BASIC FACTS:
•Of the approximately 43 million Americans with some disability, 10 million are children, and 46% are female.
•Since the mid-70's, federal laws have mandated mainstreaming as much as possible for disabled children. Nevertheless, an estimated 360,000 disabled children are still being placed in "handicapped only" schools or programs, which supports and prolongs stereotyping and discrimination, and lowers the disabled child's motivation for further education or work.
•Minorities are overrepresented among the disabled: for the general population (working age adults). 15% are disabled. For Blacks, 22% are disabled. For Hispanics, the figure is 20% and for Native Americans, 19%.
•Unemployment among working-age disabled people exceeds 50%. But disabled men are twice as likely to have jobs as disabled women. Disabled women working full time earned 56% of disabled men's earnings (1980 Census data).
•Two out of every three disabled women report an annual income below $4,000.
[NOTE ON TERMINOLOGY: Language affects the way people think. "Women with disabilities" emphasizes the women, and not the disability, "The disabled" dehumanizes persons with disabilities and makes them into objects, "Wheelchair bound" conjures up the image of a woman tied to a wheelchair, rather than a woman who uses a wheelchair. Women who are blind prefer "blind" to "sightless". Women with disabilities are handicapped only by the obstacles society places in their way. ~ a reminder from W.W.D.U.]
BIRTH OF DREDF: Until 1980, there was very little of the kind of information public or private agencies need to deal specifically with the needs of women with disabilities. In 1980, the Disability Rights Education and Defense Fund (DREDF) sought funds administered under Women's Educational Equity Act (WEEA) to do a study of disabled women's educational attainment. The results showed that special education for children with disabilities (both males and females) which segregated them actually held back their educational attainment. Disabled persons who had been "mainstreamed", regardless of sex or severity of disability, showed higher educational attainment than those who had not been mainstreamed. DREDF itself was founded in 1979, by disabled people and parents of disabled children. They now do mostly policy studies, programs and education training, and litigation for the disabled. They are conscientious about including disabled women's issues and concerns in their programs.
In 1973, Federal legislation (PL94-142) was passed mandating the least restricted environment for disabled children (ages 5-21) in public schools. In 1986, PL99-457 was passed, extending coverage to all children (from birth to age 21), though states are not required to implement it.
WEEA'S GOOD BEGINNINGS: Between 1980 and 1983, under the leadership of Leslie Wolfe, WEEA funded some very good projects. In 1981, WEEA funded the first national conference on educational equity for women and girls with disabilities. This was the first time that educators, equity specialists, and professionals who work with disabled women came together with disabled women themselves to identify issues and learn from each other. The following year, WEEA funded another conference, which was produced by Project REED (Resources on Educational Equity for the Disabled) of the Women's Action Alliance in New York City. About 1/3 of the attendees were disabled. The conference agenda made connections between racism, sexism and "able-ism", and marked a new level of integration for everyone who attended.
These conferences sparked others in different parts of the country, and a number of networks developed that have continued to produce beneficial
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DECADE OF THE DISABLED: At the same time, in 1981, the United Nations declared the International Decade of the Disabled, which has provided many occasions worldwide for disabled people to organize with each other and with representatives of the institutions that affect them. It is the first time that people with disabilities have been encouraged, on a global basis, to speak for themselves to the governments and institutions that decide public policy. Largely as a result of the UN Decade, there is a global movement among disabled people to come together across disabilities, sex, race, and national barriers. By doing so, they may build enough political force to make a major difference in the way institutions, and eventually, all people treat people with disabilities.
OTHER GOOD BEGINNINGS: In addition, many women's organizations have begun to incorporate disabled women's and girls' issues into their programs and services. For instance, Girl Scouts of America has trained its troop leaders on the issues, and many local troops have had programs or special projects for girls with disabilities, including public education about disabled children. Planned Parenthood has also made changes, with many local offices now offering special services for disabled women. The New OurBodies Ourselves includes disabled women's issues wherever appropriate throughout the much expanded text. And the National Women and the Law Conference has included a panel on Disabled Women's Legal Issues since 1983, as well as having a seat on their Board for a disabled women.
Established groups that deal specifically with the disabled tend to have been structured by and for men and have a mixed record on women; for instance, a few Centers for Independent Living have adapted to the specific requirements of disabled women, but most have not.
HEADSTART'S RESOURCE ACCESS PROGRAMS: In 1974, Headstart legislation mandated 10% of available slots for handicapped children. Special services called Resource Access Programs were set up to give training and technical assistance to Headstart Programs so that they could better serve handicapped children. Under Headstart regs, needs assessment requires substantial parent involvement, as do the Citizen Councils that oversee Headstart programs. Parents (usually mothers) of children sometimes volunteer, or get training and go on to become directors or teachers. All of these factors have helped Headstart programs become and remain sensitive to the needs of girls with disabilities.
CLEARINGHOUSE ON DISABLED WOMEN'S PROGRAMS: There is no national data yet on programs especially for women with disabilities, but a survey was conducted this past summer (1987) by Educational Equity Concepts, which recently opened The Clearinghouse on Disabled Women's Programs and got funding (from the Ms. Foundation) at the end of 1986 to do the survey. They sent out about 4000 questionnaires, to individuals and known programs. Ellen Rubin is currently processing the results, which should be available some time in 1988. EEC is now seeking funds for continuing the project, and for publication of the directory.
ORGANIZING BY WOMEN WITH DISABILITIES: At the end-of-decade World Conference of Women in Nairobi, Kenya, in July 1985, disabled women did some international networking and founded Disabled Women's International, a global network
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WOMYN'S BRAILLE PRESS, INC. is an all volunteer group, of blind and sighted women, founded in 1981 to make feminist literature available on tape and in braille. They now have over 250 books and resource guides available, and a subscriber list of over 200 in the US, Canada, England and Australia. A subscription (sliding scale $25 to $10) gets you unlimited borrowing privileges, a quarterly newspaper in print, tape or braille, and a catalog of materials available.
HANDICAPPED ORGANIZED WOMEN: HOW was founded in Charlotte NC, in 1979, by Deborah McKeithan, who still serves as President. In 1983, HOW began to organize nationally, and it now has over 140 chapters or affiliated groups nationwide. HOW emphasizes self-help and peer support, across disabilities and with attention to the specific concerns of women, especially health and employment. The national office offers chapter development resources, including Volunteer Involvement and Leadership Development.
Though she is legally blind and has epilepsy, cerebral MS, and stroke damage, Ms. McKeithan travels not only to help organize HOW chapters, but also to Washington to lobby for the Fair Share Incentive Plan, which would remove a major work disincentive for the handicapped, who, under current law, lose their Medicare benefits if they take a paying job. The Fair Share Incentives Plan (H.R. 1971, S. 936) would allow the working disabled to keep their Medicare coverage by paying for it on a sliding scale based on income. McKeithan thought up the Fair Share Plan when HOW became sufficiently well-established (in 1985) for her to switch from full-time volunteer to a salaried position. Since she is uninsurable (by private insurer's criteria), she realized how powerful a work-disincentive the loss of Medicare coverage was, and proceeded to try to get the law changed before her two-year "work-trial" period is up.
IN SUMMARY:
Women with disabilities have not only the challenge of their disabilities, whatever they are. They must work with disabled men on disability issues in order to impact institutions, and with non-disabled women on women's issues, and across disabilities (and other barriers, such as race or age), when they work with each other. That's a lot of extra work, just to define their issues and make themselves heard. Therefore it is very important that non-disabled women take responsibility for including disabled women's concerns and issues in their own organizing and information gathering and dissemination, and speak up for disabled women's rights in contexts where there are no women with disabilities to represent themselves.
—Information and leads for this article were provided by: Mary Lou Breslin, Adrian Asch, Harilyn Rousso. Merle Froschl, Ellen Rubin, Jane DeWeerd (Headstart). Julia Schechter and Ruth Begun (WWDU), and Dinah Heller (NYU/RAP)
RESOURCES:
Educational Equity Concepts, 114 East 32nd St., New York, NY, 10016, (212) 725-1803. Merle Froschl or Ellen Rubin.
Disability Rights Education and Defense Fund, Inc., 2212 Sixth St., Berkeley, CA 94710. Mary Lou Breslin (Deputy Dir.) (415) 644-2555.
Handicapped Organized Women, Inc. P.O. Box 36481, Carlotte NC 28235. (704) 376-4735.
Networking Project on Disabled Women and Girls, YWCA 610 Lexington Ave. NY NY 10022. Harilyn Rousso, (212) 755-4500.
Women's Braille Press, P.O. Box 8475. Minneapolis MN 55408. (612) 872-4352.
National Council on the Handicapped, 800 Independence Ave. SW, Ste. 814, Washington DC 20951. (202) 267-3846.
World Institute on Disabilities: 1720 Oregon St. Berkeley CA, 94703. (415) 486-8314, Judy Heumann.
Disabled Women's International and Women With Disabilities United (WWDU), P.O. Box 323 Stuyvesant Station, New York, NY 10009 (see below)
PUBLICATIONS:
Building Community, a manual exploring issues of women and disability, by The Women and Disability Awareness Project at Educational Equity Concepts, 1984. With grant from Ms. Foundation.
With the Power of Each Breath, A Disabled Women's Anthology,edited by Susan E. Browne, Debra Connors, and Nanci Stern, Cleis Press, Pittsburgh/SanFrancisco, 1985.
No More States, stories and articles, published by DREDF, 1982, Berkeley
The Disability Rag, bi-monthly newspaper for disabled people, PO Box 6453, Syracuse NY 13217 (subscriptions). PO Box 145 Louisville KY 40201 (office, inquiries). Published by Cass Irvin and friends, including some men, but with full openness to concerns of women with disabilities.
Disabled Women's International, ed. Ruth Begun and Julia Schechter, c/o WWDU-DIA, P.O. Box 323, Stuyvesant Station, New York NY 10009. $10 - $25 (sliding scale, whatever you can afford) membership and subscription. DWI carries notices of events, book reviews, and articles.
ONE GOOD BOOK: With the Power of Each Breath is an anthology of writings by women with disabilities, published in 1985 by Cleis Press. About 50 women, with a wide variety of disabilities, write without censorship about their experiences and feelings about their disabilities. If you are not disabled, and want to know what it's like to be blind or quadriplegic or learning disabled or stereotyped by family and schoolmates as disabled, this book would be a good place to start.
ONE GOOD PROGRAM, BUILT AROUND PEER MENTORING: One very good support group for disabled women and girls was created by Harilyn Rousso, at the YWCA in mid-town Manhattan. Ms. Rousso has Cerebral Palsy and knew from her own experience that the problem of overcoming internalized negative self-images, internalized disability, was the basic problem that had to be addressed. With the support of the YWCA, in 1984, Harilyn set up the Working Project for Disabled Women and Girls, with the goal of increasing the educational and vocational aspiration of teenage women with disabilities. Providing varied contact with adult disabled women who serve as mentors and rolemodels for a group of 35 teenagers in the first year, the program has stayed small, largely because Harilyn feels that the work needs to be intensive, and for many of the girls, longterm. Various types of mentoring have been tried, serving a total of about 100 women. A secondary purpose was to develop a mentoring model that could be replicated, and versions of the NY program are being tried or have been tried in Los Angeles. Spokane, Albany, Pittsburgh, and Westchester (NY).
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