Disability, Genetics and Caregiving

Public health and social policy can have dramatic implications for people with disabilities, their families and communities. Identifying key issues and optimizing the health system’s response to them ideally rely on strategic input from these communities as well as from academics and other researchers, policy makers and service organizations.

Facilitating this important collaboration is a priority of the National Network on Environments and Women’s Health (NNEWH), one of four federal Centres of Excellence for Women’s Health established in 1996 by the Women’s Health Bureau to “enhance the health system’s understanding of and responsiveness to women’s health.”

Housed at York University’s Centre for Health Studies, NNEWH coordinates community-academic partnerships in the development and dissemination of policy research on women’s health issues across Canada. This unique approach brings together a diversity of perspectives and evidence-based findings to address gaps in public policy and education on the health effects of our physical, social and regulatory environments at all levels.

To date, NNEWH’s multidisciplinary researchers have collaborated with community and advisory partners experienced in women’s health and social research, policy and service delivery to produce over 50 research projects and many more associated workshops, books, policy papers and journal articles.

Network projects have assessed impacts of health systems (reforms, traditional, complementary and informal practices and new genetics); work environments (paid and unpaid, unemployment, restructuring); and policy (social, economic and health), with reference to such factors as age, family structure, economic status, geographic location, ability, language and culture.

This year, NNEWH has launched a two-volume collection of research results, “Head, Heart and Hand: Partnerships for Women’s Health in Canadian Environments,” edited by Penny Van Esterik.

NNEWH partners have produced important work and recommendations in the area of disability, genetics and caregiving (please see sidebar).

Recently supported activities include the Canadian Association for Community Living’s (CACL) national “Workshop on Unpaid Caregiving” in 2003. Women leaders in national and family disability organizations identified information needed to help move the federal policy agenda on issues of women’s unpaid caregiving for a family member with a disability.

The Roeher Institute received support to hold a policy workshop to implement recommendations of the report, “The Construction of Disability and Risk in Genetic Counselling Discourse.” A community discussion guide and Knowledge Network on Inclusive Societal Values are being developed by project partner, CACL. Moved by the workshop to raise public awareness, Member of Parliament and playwright Wendy Lill wrote a play that was performed before standing-room-only audiences at Toronto’s Tarragon Theatre last year.

Network strengths in disability research are enhanced by the work of NNEWH executive member and director of the York Centre for Health Studies, Dr. Marcia Rioux, who is also director of York’s new master’s program in Critical Disabilities Studies. As co-director of Disability Rights Promotion International, Dr. Rioux heads a worldwide monitoring system to track discrimination towards people with disabilities that will field-test ways of supporting rights with local disability groups.

NNEWH will continue to work for policy change to promote the well-being of marginalized women in Canada with federal funding until 2008.

(For information, free publications or to become involved, please contact us at [email protected], (416) 736-2100, ext. 20715, or visit our website at www.yorku.ca/nnewh.)

NNEWH PUBLICATIONS:

“The Impacts of Policy on the Health and Well Being of Women Raising Children with Disabilities”

Canadian Association for Community Living

“The Construction of Disability and Risk in Genetic Counselling Discourse” and associated policy workshop report, “Questioning Prenatal Genetics”

The Roeher Institute

“Theoretical Perspectives on the Gendered Body and Disability”

Shelley Tremain, Philosophy Department, Wilfred Laurier University

“The Legal Regulation and Construction of the Gendered Body and of Disability in Canadian Health Law and Policy”

Osgoode Hall Law School, Roeher Institute and Institute for Feminist Legal Studies

“Missing Voices in Long-Term Care Policy Making: Elderly Women and Women with Disabilities Receiving Home Care”

Jane Aronson, York School of Social Work

“Assessing the Impact of Restructuring and Work Reorganization in Long Term Care”

Pat Armstrong, York Sociology and Women’s Studies, and Irene Jansen, CUPE