Psychologist Linda R. Mona, PhD, met with seven physicians before she found one who supported her decision to get pregnant. Mona, who uses a wheelchair, found that many physicians quickly dismissed the idea of her raising a child, assuming her disability would hamper her ability to come to the aid of a crying baby or keep up with an energetic toddler.
“There was a very prejudicial attitude about my choice,” said Mona, who treats veterans with disabilities at the VA Long Beach Health Care System in Long Beach, Calif.
Mona’s sons are now 8 and 5. And her outstanding ability to balance motherhood and career led Working Mother magazine to choose her as one of its “Working Mothers of the Year” in 2009.
But Mona’s story, which she shared at the APA conference “Inequity to Equity: Promoting the Health and Wellness of Women with Disabilities” Oct. 17–18 in Washington, D.C., offers a glimpse at how women with disabilities are often marginalized, even by health professionals.
“Women with disabilities have felt silenced for a long time,” said Mona.
The conference — hosted by APA, Gallaudet University and Howard University’s Women’s Health Institute — showcased best practices for empowering and improving health care for women with disabilities. It also highlighted areas where more education, advocacy and research are needed.
According to the Centers for Disease Control and Prevention, U.S. women are more likely to have a disability than U.S. men, 27 million versus 23 million. Arthritis or rheumatism is the most frequent cause of disability for women, followed by back or spine problems. Research shows that women with disabilities are also especially vulnerable to poverty, poor health, depression and social isolation. They are also more susceptible to sexual and physical abuse, often at the hands of their caregivers.
Advocacy and research by the World Institute on Disability, APA, the Center for Research on Women with Disabilities and many more groups have shed light on these disparities and made progress toward breaking down barriers to care, said speakers at the October conference. But enhancing the wellbeing of women with disabilities requires a more comprehensive approach, one that includes creating models for integrated, culturally competent care and more research on how sexual orientation, race and other factors intersect with disability.
“We have come a long way, but we have so much further to go,” said APA’s Executive Director for Public Interest Gwen Keita, PhD.
For its part, the U.S. Department of Labor has several funding and public education initiatives designed to challenge assumptions that people with disabilities can’t excel in the workplace, said Assistant Secretary of Labor Kathleen Martinez, who also spoke at the meeting.
“This conference is about improving health outcomes for women with disabilities, and employment has a role to play both financially and emotionally in this equation,” said Martinez, who has been blind since birth and heads the department’s Office of Disability Employment Policy. “When we work, we don’t just benefit our bosses, we benefit ourselves.”
A full-inclusion workforce
In today’s economy, jobs are hard to find, but the job hunt is particularly tough for people with disabilities. According to 2011 data from the Bureau of Labor Statistics, only 21 percent of people with disabilities are employed.
Changing that number by encouraging employers to hire people with disabilities is a Labor Department priority, said Martinez. “Our goal is to change the landscape of our work force and weave in the experiences, talents and strengths of women with disabilities,” she said. One federal initiative aimed at accomplishing that goal is “Add Us In,” which brings universities and small businesses together to devise ways to recruit and retain people with disabilities. Martinez is also working to change negative attitudes among employers about hiring people with disabilities through the federal Campaign for Disability Employment, a public relations effort that highlights the talents of people with disabilities and challenges workplace prejudices, such as that disabled employees drain time and resources.
“We all know that fear is still a barrier, and that there are still old, worn-out perceptions, myths and stereotypes,” she said.
The campaign’s award-winning “I Can” announcements feature seven people with disabilities talking about the skills they bring to their jobs, including Mat McCullough, who works for the District of Columbia Developmental Disabilities Council and has cerebral palsy, and Cheryl Collier, an elementary school teacher and middle school volleyball coach who is deaf.
Integrated, inclusive care
Improving health-care delivery for women with disabilities is also a top priority, the speakers agreed. Women with disabilities often receive substandard care because too few health professionals are trained on how to work effectively with them. Many professionals speak to caregivers or assistants rather than the patient, for example, while others don’t have the appropriate office equipment, such as adjustable-height exam tables or mammography equipment that can accommodate women in wheelchairs.
“Women with disabilities’ health concerns often go unmet, particularly with regard to their sexual and reproductive health,” said Lesley Ann Tarasoff, a graduate student from the University of Toronto, at a session on reproductive health issues. “They are often not screened for gynecological and breast cancers, often because of false assumptions about people with disabilities” — for example, that people with physical disabilities aren’t sexually active. Yet, according to 2011 data by the Center for Research on Women with Disabilities, 22 percent of women with disabilities reported a history of sexually transmitted diseases. While there is some research on sexuality and disability, much of it is limited to sexual dysfunction, said Mona.
In addition, conversations about sex aren’t happening enough between patients and health professionals, said Colleen Clemency Cordes, PhD, of Arizona State University. “Healthcare providers don’t want to bring [sex] up because they don’t feel like they have the skills necessary to handle this. Patients tend to not bring it up because they are worried how their providers are going to respond, and mental health providers don’t bring it up because they feel like they don’t know enough about the medical aspects of disabilities,” she said.
To help patients, researchers need to shift their attention from sexual dysfunction to “sex positive” research, and providers need to learn how to assess their patients’ sexual health. They also need to offer guidance on strategies that can help patients have active, satisfying sex lives, said Cordes.
Overall, patients with disabilities also have to be well versed in all aspects of their care, said Marsha Saxton, PhD, who directs research and training at the World Institute on Disability. To help, the institute has developed “Map to Access,” an online training curriculum to help patients with disabilities advocate for their health needs. The website includes downloadable fact sheets in English and Spanish that patients can give their health professionals on such topics as the reproductive health needs of women with physical disabilities, how to buy adjustable exam tables and working effectively with people who are blind or have hearing loss, said Saxton.
“Doctors don’t always know how to work with disabled patients, but they can get better and develop a finer appreciation of these patients’ needs,” she said.
APA expects to release a research, practice and policy agenda by summer 2012 based on the “Inequity to Equity” conference that will help psychologists and other health professionals meet the needs of women with disabilities. The conference was also partially funded by a contract from the Office on Women’s Health of the U.S. Department of Health and Human Services and received support from APA’s Div. 22 (Rehabilitation) and Div. 35 (Society for the Psychology of Women) and many more groups and individuals.
Through the Looking Glass (a national center providing services and other resources to parents with a disability)