The Problem: Women with disabilities have the same need for reproductive health services as do all women, but until the recent past, physical obstacles and outdated attitudes prevented them from getting proper care.
Grantee Background: Years ago, Judy Panko Reis and her fiancé were camping in a state park in Hawaii when they were assaulted in a random attack. Her fiancé died and Reis was left for dead, her skull shattered on the left side. The brain injury left her partially paralyzed and in need of months of painful physical rehabilitation and psychotherapy to manage her depression and nightmares.
Eventually, Reis fell in love again, married, and looked forward to having a child. She and her husband turned to the Rehabilitation Institute of Chicago, where Reis had been a patient, for prenatal support. She was shocked to find out that the health facility, like most others in 1987, had no reproductive health services for women with disabilities. "When I got pregnant, I was winging it by myself," Reis recalls. "They told me, 'If there are going to be resources, maybe you are the person to start creating them.'"
Her son was three years old when Reis and four other women—including two RIC physicians and two other women with disabilities—began to meet to discuss the lack of basic Ob/Gyn care, information, support and advocacy for disabled women. They then reached out to the community and invited disabled women from various ethnic and cultural backgrounds to the institute to discuss the kinds of challenges they were facing.
The issues were worse than expected. The two physicians were dismayed to hear that disabled outpatients at the institute were not getting regular mammograms or Pap smears, or help with menopause. Then, there were horror stories of women who had given their children up for adoption or had their tubes tied under pressure from family and providers who did not view them as competent parents because of their disabilities. Still others said they had been abused by caregivers or partners but had been unable to get help because the domestic violence shelters were not wheelchair accessible or did not have sign language interpretation.
"We came up with the idea to create a health center run by and for women with disabilities, in collaboration with health care providers," Reis recalls. "We knew there was not a model like that anywhere in the country."
Funding the center was a challenge. And there was still no formal setting for it. However, the Robert Wood Johnson Foundation was just launching a new program called Robert Wood Johnson Community Health Leaders to support individuals who were working to provide health care for disenfranchised groups in their communities.
In 1993, RWJF named Reis a Community Health Leader in recognition of her efforts to bring reproductive health services to disabled women in Chicago.
Results: The award gave Reis and colleagues much needed credibility and visibility within the women's health community, which, until then, had not truly grasped the issues involved. "Women's health leaders thought our issues were that we wanted to get out of our wheelchairs or that we wanted to get cured—they didn't get it," says Reis. "It was very difficult to get the message out that we were mothers, that we could get breast cancer or uterine cancer, and that we needed the same services as they did and just wanted to make sure these services were user-friendly for those of us with limitations. The award got us to the table where women's health policy issues are being decided in the city and the state—we were not at that table before."
The Rehabilitation Institute of Chicago immediately donated space to house what is now called the Women with Disabilities Center. It offered peer support groups, educational seminars, as well as the services of an outpatient Ob/Gyn clinic with an accessible examination table and nurses and physicians sensitive to the patients' issues.
With greater visibility came requests for different types of help—including calls from mothers asking what kinds of services existed for girls with disabilities. "We had been focused on reproductive health and services for pregnancy and mothering," Reis recalls, "but these mothers were telling us that their daughters didn't have friends, didn't have role models and they didn't know what kind of future they had ahead of them." Reis brought the mothers' concerns to the center's community board, composed of women with diverse disabilities and cultural backgrounds, and two members in wheelchairs set up a program that paired disabled girls with disabled women mentors rather than able-bodied mentors, now a core program at the center.
"The RWJF award also enabled me to become the editor of Resourceful Woman, an educational newsletter written by and for women with disabilities and their health care providers," says Reis. The newsletter is circulated to over 7,000 readers globally, and is distributed free of charge.
In 2003, as part of its 10th anniversary celebration of the Robert Wood Johnson Foundation Community Health Leaders awards, RWJF made special research grants to a number of first-year award winners. Reis used her $5,000 grant to co-author a 2004 white paper about how the health care delivery system is not structured to provide safe, patient-centered care to people with disabilities. The paper's findings were cited by the U.S. Surgeon General and the National Council on Disabilities, which granted Reis and her colleagues funds to organize a health care summit on ways to improve access to health care in a variety of settings.
The center has become the go-to source for policy and education issues dealing with women, health and disability. "Now women's health initiatives, whether from the state or national government, are not in the dark about women with disabilities," says Reis. "If anything, they are especially interested in bringing services to populations that have been underserved. In the past, those were defined primarily by race and culture. Finally disability has been included."
RWJF Perspective: Since 1993, RWJF has recognized unsung and inspiring individuals who work in their communities—often among the most disenfranchised populations-to address some of the nation's most intractable health care problems. Formal recognition by the Foundation of these Robert Wood Johnson Foundation Community Health Leaders and their programs often launches them to greater levels of influence and extends their reach to serve more vulnerable populations.
RWJF provides a financial award to 10 individuals and their organizations each year, and connects the Robert Wood Johnson Foundation Community Health Leaders with one another so they can build their programs upon the wisdom and experience of their peers and previous award winners.
"Community Health Leaders are characterized by three specific traits-they are courageous, they are creative and they are committed," says National Program Director Janice Ford Griffin. "The Foundation recognizes the tremendous resource of experiences among the Leaders and we look forward to mining that resource as we consider future initiatives."