For many women, getting a pap smear or a birth control prescription at a doctor’s office is relatively effortless. Perhaps a little uncomfortable, yes, but only temporarily — with important, beneficial results.
However, not all women in need of reproductive health care find themselves able to be accommodated in a standard doctor’s office. Women with disabilities are far less likely to make essential appointments regarding their reproductive health due to the physical and emotional hurdles they encounter in a typical clinic. From inaccessible exam tables to assumptions that disabled women are not sexually active, barriers in the medical field can leave women discouraged and uneducated about their own health.
But a Chicago advocacy and support group for young women with disabilities — called the “Empowered Fe Fes” — hopes to change this destructive cycle. In August, the group produced a comprehensive guidebook to reproductive health for women with disabilities titled “Take Charge!”, meant not only for patients, but also for doctors, hospital and clinic staff, caretakers, and the general public.
“A lot of people in the world think people with disabilities can’t do certain things, almost like we’re babies,” said Stephanie Jackson, a 23-year-old member of the Empowered Fe Fes. “One of those things is sex. This guide will help people understand that we have the same reproductive health needs as anyone else.”
Jackson, who joined the group when she was 17, said she hasn’t personally faced problems at her OB-GYN office, though she’s heard horror stories from her fellow Fe Fes (“fe fe” is a possible reference to female friend).
“I’ve heard about toilets being too high, awkward interactions with doctors, and just general inaccessibility,” she said. “There’s a lot of this kind of stuff going on that no one sees.”
These kind of interactions make it difficult for women to return for necessary exams and contraceptive guidance, potentially leading to untreated sexually transmitted infections, unwanted pregnancies, and general misconceptions about their reproductive health. A 2005 study by the Guttmacher Institute found that women with disabilities are 50 to 70 percent less likely to receive a pap smear than those without a disability, based on access and health care coverage.
“This guide first addresses patient’s accessibility at a medical facility,” said Fulani Thrasher, community organizer for Access Living, the organization behind the Fe Fe’s creation. “But, almost more importantly, it also addresses self-advocacy at a doctor’s office.”
The culmination of three years’ work, the downloadable guide is meant specifically for women in the Chicago area — but only because it rates local hospitals and clinics for their accessibility. The rest covers more universal issues, including a patient’s accommodation rights and general information on sexually transmitted infections. A portion of the guide also specifically focuses on empowering women to stand up for themselves.
The guide addresses specific situations where a patient should speak up, like if they aren’t able to undress on their own, are blind, or have a service animal. “If confronting your physician seems like something that might be difficult for you, try role-playing first with friends or a family member. Practice asserting yourself,” it suggests.
The Fe Fes’ guide is unique not just for its comprehensiveness. In fact, nothing else like it exists in the United States.
However, the government website geared specifically toward this population provides no information related to reproductive or sexual health. Even the Americans with Disabilities Act (ADA) guide for medical facility compliance barely touches the topic — only referring to exam table accessibility requirements for gynecological exams. The only other up-to-date information online on providing reproductive health care to women with disabilities is buried in the American College of Obstetricians and Gynecologists’ website.
Little research has been done in this field — due perhaps to the delicacy of this topic (sexual abuse and forced sterilization are far more common in disabled communities) — which leads to little education on the issue in medical schools. The general treatment of adults with disabilities is largely skimmed over.
“Generally, physical disability is taught as a separate self-contained entity rather than incorporated throughout all segments of medical education,” wrote Judi Rodgers, a pregnancy specialists at the National Center for Parents with Disabilities and their Families, in a 2010 report.
And a 2009 report by the National Council on Disability seconded her findings.
“Few health care training programs address disability issues in their curriculums, and most federally funded health disparities research does not recognize and include people with disabilities as a disparity population,” the study found.
The report also pointed out that federal health care funding agencies have failed to conduct oversight of “ADA architectural and programmatic accessibility compliance by states, health plans, and medical providers or assess health providers’ disability cultural competence.”
For now, the Empowered Fe Fes’ guide may best tool many women with disabilities have been wanting to share with their doctors — and the general public — for years.
“We’re regular, everyday, normal people,” Jackson said. “ We should be treated that way.”