The Health and Disabled Women Project

Despite years of advocating for better health care for women with disabilities, Pat Israel is still unprepared for some of the stories she hears. Travelling around Ontario this past year talking to groups of women with disabilities about health care issues, she’s heard many stories. Like the one from the woman who had her routine examination in the emergency department of a hospital because her doctor’s office was inaccessible. Because they’re not considered emergency cases, says Israel, people with disabilities are sometimes treated poorly by hospital staff who resent the space they take up and the aid they require in being lifted on and off examining tables.

"The woman had the exam and then they literally threw her back in her chair and threw her clothes on top of her. They said, ’O.K., we’re finished.’ And she wasn’t dressed.

"Accessibility and the attitude of physicians and other health care professionals are two of the primary health care problems facing women with disabilities in Ontario," says Israel, co-ordinator of the Health and Disabled Women Project. Now in its third and final year, the project, sponsored by DAWN (DisAbled Women’s Network) Toronto, aims to educate Ontario health care workers about health care issues of women with disabilities and to help women with disabilities become better consumers of health care services.

Statistically, women are the greatest users of the health care system, and women with disabilities often have even more health care needs than able-bodied ones. The Health and Disabled Women Project sprang from this reality, as did the desire to create DAWN groups in other parts of Ontario.

"We get calls from all over the province, but it’s better if you can refer someone to a local DAWN," says Israel.

DAWN is the national organization of women with disabilities. Begun in 1985, it has chapters in British Columbia, Saskatchewan and Newfoundland, and related groups in Quebec and Whitehorse. The first DAWN Ontario board was elected this October as a result of the Health and Disabled Women Project. DAWN addresses issues of concern to women with disabilities like employment equity, violence, parenting, sexuality, health and self-image. The organization puts special emphasis on making women’s services accessible.

The Health and Disabled Women Project began with a $325,000 grant from Ontario’s health promotion directorate. The first year of the project was spent surveying service agencies regarding what they were doing for women with disabilities, and surveying women with disabilities about what they thought the big issues were. The surveys revealed that the most important health concerns for women with disabilities centred around patients’ rights, assertiveness, access, the pap test and the breast self-examination.

In the project’s second year, Israel travelled to different parts of Ontario to speak about DAWN and health care issues in regional workshops for women with disabilities. Within Ontario, local DAWN chapters exist or are in the process of being formed in Kingston, Niagara and Kitchener. In Ottawa, the Ottawa DAWN Health Project is under way to affect local health care change.

Autonomy is stressed in the formation of regional DAWN groups. Introductory workshops are held on location, with an agenda tailored to the desires of participants and a local speaker.

"Usually, I would be the only person coming from the outside," says Israel. "We wanted it to be women working on their own, so they’d have control."

DAWN Ontario exists to formulate by-laws, provide tables and generally advise regional DAWN groups. It also works on a provincial level, lobbying government, making sure that new services are accessible and working alongside other provincial groups to further its cause.

Because of their small geographical jurisdiction, local DAWN groups have the flexibility to focus directly on regional issues. The chapter forming in Kingston is compiling a list of health care professionals whom it feels are competent in dealing with disability issues. Women seeking physicians can refer to this list.

The small groups also provide a support network. Some women with disabilities are isolated as a result of poor transportation or institutional confinement. "So many women don’t know who to turn to," says Kristen Spring, chair of DAWN Ontario and a strong bidder in the fight to get DAWN Kingston off the ground.

Being part of a group can be empowering even to those people who are already actively lobbying on their own. Jo-Ann Fortin, chair of DAWN Niagara, is one such person. After acting independently for years as an advocate for herself and other women with disabilities, Fortin experiences greater receptiveness to her ideas now that she speaks on behalf of a group.

This newly won clout is shared by other members of DAWN Niagara, too. "Some of them can’t speak. They converse with a Bliss board," says Fortin. "We’re sort of their voice."

While women with disabilities in Ontario have been successfully integrated into the project, Israel says it’s too early to gauge the effects on the health care profession. She has spoken at several health care centres in Toronto, the Provincial Association of Health Care Centres and McMaster University. She rates high the importance of making presentations to teaching hospitals. She is also enthusiastic about the effects of a guide to health care professionals currently being produced, which should be ready for distribution by the end of January. Based on results of surveys and workshops, the guide will focus on the health care needs of women with disabilities. It deals with stereotypes and issues of access, and directs health care workers in how to be sensitive in making an assessment of a woman with a disabilities, such as refraining from imposing unwanted help.

Aside from writing the guide, the remainder of the project time will be spent compiling a symposium report based on workshops and speeches, and writing a number of brochures directed at women with disabilities, dealing with a variety of health care concerns: how to talk to your doctor, moms with disabilities, sexuality and the pelvic exam.

Israel says the response so far from health care professionals has been positive. If DAWN groups continue to form and be active at the local level, she anticipates a "ripple effect". This will evolve as information about the health care needs of women with disabilities circulates and health care workers begin to approach DAWN for information.

"I think we’re at the point now where the system has to change," says Israel.

For a copy of the guide or health care brochure, call DAWN at (416) 750 3296 or write to Pat Israel, 4 Warner Avenue, Toronto, Ontario M4A 1Z3.

(Marni Norwich is a freelance writer living in Toronto.)