A year ago, Peggy Noble’s job responsibilities were limited to paper shredding.
The cerebral palsy patient had been given the simple task because no one entrusted her with more. Three days a week, she would crouch next to a machine and feed it useless documents, watching paper scraps cascade into a trash bin.
“I felt trapped,” said Noble, sitting in her wheelchair during a recent interview. “I didn’t have many friends.”
Today, she inputs data into a computer system for the Health Resource Center for Women with Disabilities in Chicago. All it took was someone to believe in her and give her an opportunity. In her case, it was the people who run the center.
“They are my best friends,” Noble said. “They’ve really given me a chance to show what I can do.”
Thanks to the Women with Disabilities Center, located in the Rehabilitation Institute of Chicago at 345 E. Superior St., others with challenges like Noble’s are discovering that companionship, rehabilitation and support are the keys to self-worth. The center is the first comprehensive health facility in the country serving women with disabilities. It also is run by women with disabilities.
“Even though I need help myself, there’s a lot I can do now,” said Noble, who spent 12 years in a nursing home before adopting a more independent lifestyle in subsidized housing.
About 15 women visit the center’s clinic weekly. It offers mammogram referral and basic ob-gyn preventive services. Hundreds of clients attend workshops and seminars on such topics as self-esteem, traveling and technology. The center focuses on some of the more troubling obstacles women with disabilities face, including isolation, dependency and physical rehabilitation.
The heart and soul of the center is co-founder Judy Panko Reis.
“Everyone needs to be a part of a community,” Panko Reis said. “It’s about transcending myths and stereotypes to help one another.”
Panko Reis became partially paralyzed and the vision in her left eye was destroyed in a mugging 18 years ago. She had left her job as a manager for an actuarial firm in Chicago to begin a new life in Hawaii, where her fiance was completing his medical training. Their plans were destroyed when they were attacked at a campground. Her fiance was killed, and she was badly beaten.
Since that day, Panko Reis has been an outspoken advocate of better care for women with disabilities, especially spinal cord injuries, head injuries, cerebral palsy, spina bifida and arthritis.
In a recent interview in her office at the Rehabilitation Institute, Panko Reis displayed the vigor and passion for which she is known. She worried about the center’s unfinished tasks.
“As we age and face the future as disabled adults, more and more issues will surface and we’ll have to pull together,” she said. “It’s difficult to do this. That’s what keeps me involved.”
Panko Reis co-founded the center with Dr. Kristi Kirschner in 1991. They believed that rehabilitation medicine, like other fields, had evolved with a male perspective and that issues relating to women with disabilities had not been part of mainstream women’s movements. This quiet minority of women across the country needed someone to step up to the challenges.
“A big part of our goal here is to teach disabled women how to be self-dependent. We want to broaden their marketability for the work force,” Kirschner said. “We have plenty of women that come in here and get involved even if they’re not getting medical services.”
The center’s newsletter, “Resourceful Woman,” has achieved an international circulation of more than 9,000. Kirschner said the newsletter is intended to help sensitize other physicians to the needs of women with disabilities.
The center also recently received a grant from the National Institute for Disability Rehabilitation and Research to provide curriculum and educational resources for medical students to become more knowledgeable about the reproductive and psychosocial needs of women with disabilities.
A former university administrative assistant who now works at the center started out as a volunteer and a patient at the clinic and eventually became Panko Reis’ assistant. Because she left an abusive marriage several years ago, she asked that her name not be used.
Although she had been paralyzed from the waist down in a car accident and had been told she would never have children, she and her husband were able to have two. Afraid that she would lose custody of her children if she divorced, she suffered through a quarter-century of isolation before she mustered the courage to leave.
“It never occurred to me that there were others like me out there,” she said. “I didn’t have any peer support. I didn’t know that there were collective ways of approaching my problems. My (lack of) self-worth was probably more detrimental to me than any lack of mobility.”
Many of the 80 or so patients at the center came in after dealing with a health-care system that did little for their particular needs. Stories abound of women waiting for hours on a sidewalk for special transportation to clinics and getting turned down by health-care plans.
“When a woman can’t transfer herself onto an examination table in a clinic, I cannot begin to tell you how much consternation that will cause in an office,” Kirschner said.
Tasks that may seem routine such as mammograms or self-examinations can be a nightmare for disabled women. Until the center was established in 1991, some women in wheelchairs couldn’t get routine gynecological exams or mammograms.
Panko Reis said that workers at several clinics told one of the center’s board members that unless she could stand, she could not be X-rayed.
When Panko Reis and her husband, Sheldon Reis, whom she married in 1983, decided to have a child, she said, there was little support from the medical community for women with disabilities who wanted to have families.
Because society often perceives such women as childlike, asexual anomalies, Kirschner said, medical treatment often overlooks their sexuality. The center also has encountered difficulty with HMOs, which don’t provide the necessary services for women with disabilities, she said.
“People with disabilities are often devalued so they end up devaluing themselves,” Kirschner said. “Here at the center we try to help women cope with disability burnout, which comes after years of fighting barriers and trying to get their needs met.”
