Izzie Bullock, who has cerebral palsy, receives gynecologic care from a University of Michigan Medical Center clinic reserved for women with disabilities.
Izzie Bullock — whose severe form of cerebral palsy prevents her from controlling her arms, legs and body — had her first appointment with a gynecologist 13 years ago, when she was 14. The doctor asked a few basic questions, she said, and put her on a birth control pill to stanch her heavy menstrual bleeding.
Within three weeks, the Belleville, Mich. resident developed a blood clot. For a year afterward, she was on blood thinners. For six more years, she just dealt with the heavy bleeding, until the physician who manages the spasms that come with her cerebral palsy suggested she test out a University of Michigan gynecology clinic specifically for females with disabilities.
There, trained staffers help her get positioned on exam tables that are electronically raised and lowered. She gets specialized care from doctors and nurses trained to handle patients with a variety of disabilities, including hearing loss that can make communicating another complexity in their health care. The clinic operates at a time when researchers — including ones administering the Cerebral Palsy Foundation’s current Women’s Health Initiative study — have cited critical gaps in care. Those disparities result in women with disabilities, compared to women without disabilities, being at higher risks for everything from breast cancer to sexually transmitted diseases to deeply embedded blood clots in their immobile legs.
“When it comes to seeing health care professionals, there is a disconnect between the practice of medicine and disability awareness or knowledge,” Bullock said. “Unless you are going to a doctor who specifically states they specialize in disability, there is often a gap in care. A primary care doctor may have an understanding of a disability based on its textbook definition, but not fully understand how one’s disability impacts one’s overall health.”
In Several Areas, Health Care for the Disabled is Lacking
Several studies have explored how people with disabilities don’t have the same access to or the same quality of care that able-bodied people get. A 2020 study published in Women’s Health Issues found that women with physical disabilities have unmet gynecologic care needs, including a lack of cancer screening and contraceptive care. Likewise, physicians included in that qualitative study, involving 29 patients and 20 doctors, said they lacked training in how to medically care for people with disabilities.
According to a 2017 report from the Centers for Disease Control and Prevention cancer research, using data from 2013, 81% of 21- to 65-year-old women without disabilities reported having a pap smear, while 60% to 80% of women with disabilities received one.
“The Gynecologic and Obstetric Issues Confronting Women with Disabilities” chapter in The Global Library of Women’s Medicine’s Welfare of Women reported that women with disabilities are also at increased risk for under-detected breast disease, including malignancies. That’s partly because some clinicians and patients, including those who cannot manually examine their own breasts, wrongly believe that mammographies can only be performed when a woman is standing.
“Because sexual education and contraceptive counseling are neglected for this patient population, they experience higher rates of unplanned pregnancy and sexually transmitted infections,” said Dr. Susan Ernst, who’s been caring for Bullock at the University of Michigan clinic. It’s patients include those with autism, traumatic brain injury, seizure disorders, cognitive impairment and a variety of genetic disorders.
In some cases, a sexually transmitted disease is the only sign that a woman may be in an abusive relationship. If a woman with a disability doesn’t receive adequate gynecological care, signs that she may be a victim of domestic violence also can be missed, according to the Global Library chapter.
Getting to Medical Offices, Communicating with Clinicians
As far back as 1999, researchers were identifying reasons why disabled people do not always get adequate health care. That year, research published in Obstetrical & Gynecological Survey, a medical journal, concluded that “Many women with disabilities do not get the regular physical examination that is needed to maintain optimal health. Reasons include inaccessible facilities, lack of proper equipment, untrained staff, patient misconceptions, and a lack of patient and clinician information.”
Added Ernst, the Michigan gynecologist: “They may experience other barriers such as transportation and lack of health care insurance. Once they seek reproductive health care, they may experience stigma and discrimination by health care providers.”
What Does a Dedicated Clinic Look Like?
The gynecology clinic for adolescents and women with disabilities in Ann Arbor was started in 1988 by a member of that medical school’s faculty whose daughter had Down syndrome. In 2004, Ernst became the clinic’s director. “I also have a daughter with disabilities and therefore understand the struggles that patients and families have around access to good quality health care,” she said.
Yearly, the clinic, whose staff includes social workers and certified sex therapists, sees approximately 500 patients. Many had been referred to the clinic by their primary care doctors, neurologists, endocrinologists, physical medicine and rehabilitation specialists. Many patients also hear about the facility from other people with disabilities.
The range of services that Ernst’s clinic offers include reproductive and gynecologic health services; consultations with girls who are entering puberty and their families; evaluations of young women whose menstrual periods started too soon or whose menses are unusually delayed; cervical cancer screening; sexual education counseling; and sexual assault prevention.
Another consideration is the amount of time spent with patients. “In medicine, adequate time for [getting the medical] history and physical examination are often lacking,” Ernst said, calling that an issue for non-disabled and disabled patients alike. Her clinic allots more than the usual amount of time to each of its patients.
So does Magee’s Center for Women with Disabilities in Pittsburgh. Dr. John Harris, who works there, said he and his colleagues spend at least 30 minutes, on average, with their patients. He estimated that the average visit in other clinics is 10 to 20 minutes.
Like the Michigan clinic, Magee’s clinic has special equipment. Patient lifts are used for patients who can’t move themselves to the exam bed. Special foot rests are used for pelvic exams, which work well for people who need special positions. Office exams and radiology tests are scheduled on the same day. If an in-person American Sign Language interpreter isn’t available, the clinic has access to a sign language video chat program. They also use a computer application to help patients who have trouble communicating verbally and don’t know sign language. Some people on the autism spectrum find this useful.
“Accessibility isn’t only legally required, it’s important medically, so that minor problems can be detected and treated before turning into major and possibly life-threatening problems,” according to U.S. Department of Justice Civil Rights Division guidance, concerning Americans with Disabilities Act provisions for individuals with mobility disabilities.
Treating Patients with Disabilities
Bullock likes the Michigan clinic because it treats her holistically. “My disability and my reproductive health are not being treated as two different entities that never cross paths but with a focus on how they connect,” she said. “A lot of women with disabilities do not see a doctor for their reproductive health because they’re viewed as asexual, so reproductive health care is not needed, which could not be farther from the truth.”
Bullock also appreciates how clinic staffers help her dress and undress during her medical appointments, allowing relatives who escort her to the clinic to step out. That way, any discussion of her sexual health is between her and her physician.
“Being a patient at the clinic is empowering,” Bullock said, “because it acknowledges that people with disabilities are sexual beings and that we deserve to be treated as such and deserve the same health care as anyone else.”
