Building Bridges Across Difference and Disability

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When an Ontario body image project set out to explore self-concepts with women who have facial and physical differences, they were not sure what they would find. They did not expect, however, that the women’s treatment by their care providers would be one of the most prominent themes to emerge from their discussions.

As a result, the project that began as the Disabilities and Physical Differences Initiative of the Body Image Project, corun by Sunnybrook and Women’s College Health Sciences Centre and AboutFace International, became Building Bridges Across Difference and Disability, a new booklet designed to help care providers treat clients with facial and physical differences.

Anna Pileggi, Executive Director of AboutFace International, a support organization for people with facial differences and disabilities, and one of the partners in the Body Image project, recalls that disempowerment by health care providers was one of the overwhelming concerns expressed in the focus groups held across Ontario. Women interviewed indicated that their health care providers had a tremendous impact on their self-concepts. Unfortunately, that impact was typically negative.

When a baby is born with a facial difference, or when a facial difference or disability occurs later in life through accidents, illness or abuse, health care providers are often the first point of contact, explains Project Coordinator Hilde Zitzelsberger. "In these interactions lots of messages are conveyed about the meaning of bodies and the value of people with bodies that are different. There isn’t enough recognition of the long-term impact these messages can have," Zitzelsberger says.

In the course of the focus groups about body image and self-concept, the discussion routinely turned to the negative impacts of interactions with care providers, and then to ways care providers could enhance positive self-concepts in their clients through changes in behaviour and language use. For example, doctors often use clinical terms like "disfigurement" and "deformity" in reference to their patients’ conditions. Clients in the focus groups suggested "facial difference" as a term that is more sensitive to the reality of living with a difference. These insights seemed too valuable to lose, and with the cooperation of many care providers frustrated with their own lack of knowledge, the decision was made to turn it into a booklet.

"Clients are impacted negatively or positively in every health care setting," the authors of Building Bridges Across Difference and Disability write. That’s why the 19-page booklet focuses specifically on strategies for creating positive experiences, drawn from interviews with clients, care providers and academic research. Building Bridges offers a variety of practical and immediate suggestions care providers can incorporate into their practice. "Sometimes care providers will say, ‘Well, I can only make these three changes,’" says Pileggi, "and that’s great. With the little changes come the big changes."

Only three months into the distribution process, it’s still too soon to measure the impact Building Bridges is having. However the booklet has received an overwhelming response from care providers in many fields. "Health care occurs in many different places within the community. We wanted this booklet to focus on the interactions between clients and care providers regardless of their specialty," says Zitzelsberger, who is not surprised that insights from the booklet are being applied in fields from social work to psychiatry and medicine.

Building Bridges Across Difference and Disability: A Resource Guide for Health Care Providers is only available in English. It can be obtained by calling AboutFace at 1-800-665-3223, or by emailing info@aboutfaceinternational.org. There is a $3 fee for those residing outside of Ontario.

Building Bridges In Your Practice

Suggestions for improving your interactions with people with facial and physical differences and/or disabilities:

• Ask your client how she refers to her difference or disability and then use the terms she prefers.
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• Don’t assume the difference or disability is a problem for the client. It may be a part of her identity and a source of pride.
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• Don’t assume the client’s difference or disability is the reason she has sought your care—she may be seeing you for reasons completely unrelated to her difference.
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• Treat wheelchairs as though they are a part of the person’s body space. Don’t touch or move a client’s wheelchair, crutches, scooter or walker unless given permission.
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• If your client is in a wheelchair, sit in a chair so you can converse on the same level.
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• Ask for permission before looking at and/or touching a client’s body. Explain what you are doing and why.

From Building Bridges Across Difference and Disability