Maria Barile

In 1998, the Québec Minister for Health and Social Services inaugurated the Programme Québécoise de dépistage du cancer du sein (PQDCS): the Quebec breast cancer detection program. The goal was to decrease mortality related to breast cancer by 25% between 1998 and 2008 among women aged 50 to 69 years. All women in this age group are invited (by letter) to have a mammogram, with the initial screening exam and follow-up tests, if needed, provided without charge by the PQDCS through the Régie de l'assurance-maladie du Québec (RAMQ).

In Montreal, there are 14 centres for the detection of breast cancer (Centres de dépistage désigné or CDDs), all located in private radiology clinics, and five centres (Centre de référence pour investigation désigné or CRID) for follow-up, all of which are located in hospitals. These centres are supposed to be accessible to all women living in the province of Québec.

The health committee of Action des Femmes Handicapées (Montreal) knew that the number of women who develop disabilities begins to rise in the 35-64 age bracket while an increasing number of women with disabilities from earlier years now live to an age where breast cancer becomes an issue of concern. According to a reliable source, women with disabilities were 11% less likely to be receiving mammograms as compared to non-disabled women.

We wanted to know if the centres in Montreal were accessible for women with disabilities and, if not, could this account for the discrepancy. We determined to measure the accessibility of each centre (CDD or CRID) in terms of obstacles (e.g., a washroom that can easily be a woman in a wheelchair) and facilitators (e.g., a centre that does not require the use of stairs to reach its main entrance).*

A team of four women with disabilities, equipped with a questionnaire designed for that purpose, visited each centre. The team consisted of a Deaf woman (who communicated using LSQ — Langue des signes québecoise), a woman with developmental disabilities, her companion or "buddy" who helped to complete the questionnaire, and a woman with both mobility and hearing impairments (the project coordinator and researcher).

Visits to the centres typically began when the women met at the front entrance where access was evaluated and note made of the general location (e.g., free-standing; in a shopping mall; in a hospital; etc.). After entering a centre, each woman in the team would ask questions pertinent to her own disabilities. At each point, from development of the questionnaire to concluding recommendations, there were ongoing meetings of the project committee which monitored the research.

Overall, no one centre was entirely satisfactory in terms of universal access for women with disabilities. CDD private clinics were generally less accessible than the CRID. The degree of accessibility of each centre was dependent upon the specific needs of the woman. For example, the information-giving documents provided to our research team were satisfactory for some, but were not accessible for women with a severe visual impairment or blindness. Similarly, some centres had mammography machines that could not be lowered sufficiently to accommodate a woman in a wheelchair. Even when architectural access was moderately satisfactory, the attitudes of some staff members were not "appropriate" and this could preclude accessibility as we defined it. This is similar to attitudes found in society at large, and ranged from lack of basic knowledge of women with disabilities to patronizing.

Recommendations based on our research were developed and sent to the DSP personnel in charge of the PQDCS. We are also preparing a guide for women with disabilities, indicating which centres are accessible (in terms of location and architecture). A copy of the full report, including details of our evaluation, will be available at the AFHM web site www.afhm.org in September, or a hard copy can be ordered for $15.00.

The health committee of AFHM recommends that whenever a program is set up with public funds to serve the general population, members of specific minority communities should be consulted and principles of universal design should be incorporated into program planning from the very beginning. This will help ensure that services, products, and buildings will be accessible to the majority of the population.

* All 19 centres (CDD and CRID) in the PQDCS programme in Montreal are overseen by a special team located in the Montreal public health department, l'Équipe Cancer de la Direction de santé publique-Montréal-Centre. This project was undertaken in collaboration with this team and with La table sur le dépistage du cancer du sein de Relais-femme. Our consulting committee were Linda Ouellet, Marie Fafard, Chantal Bolla, Suzanne Lavallée, Lorraine Doucet, Anita Matheson, Michèle Blais, and Abby Lippman.