Part One: Women with Disabilities Face Barriers to Healthcare
Imagine breaking your leg and going to the hospital where doctors tell you they’re going to set it so that it won’t bend. After all, you don’t need it since you use a wheelchair.
Or going to get a prenatal checkup, and the nurse, who notices you're lip-reading, says, “I don’t know how you’re going to take care of a baby since you can’t hear anything.”
Or being autistic, and not being allowed to leave your room to go to the bathroom while in a psychiatric ward.
Women with disabilities often suffer such indignities. According to the Center for Disease Control (CDC,) they experience greater disparities in healthcare access compared to women without disabilities. Discrimination in medicine is prevalent and well documented:
- Less medical research. For female, intersex, and trans bodies.
- Delayed diagnoses. A study in Denmark found that, on average, women waited longer for a diagnosis than men in 72% of cases.
- Inadequate symptom relief. When doctors don’t believe women’s accounts of their symptoms (which often occurs), they don’t provide medication or treatment that can alleviate symptoms.
Gender bias can also lead to higher incidence of patient abuse, neglect, and death, as physicians’ actions (or lack thereof) result in higher risks for female patients.
Women with Disabilities Experience a Double Whammy of Discrimination
While all women must contend with healthcare bias, its impact on those with disabilities is worse. Despite the Americans with Disabilities Act (ADA) and the ADA Amendments Act of 2008, which mandate equal access to health care services, people with disabilities still experience disparities in health care access and quality, as noted in a study in The Journal Health Affairs, ‘I Am Not The Doctor For You’: Physicians’ Attitudes About Caring For People With Disabilities.
The study, which included focus groups with physicians as well as documented research, found that doctors felt “overwhelmed by the demands of practicing medicine in general and the requirements of the Americans with Disabilities Act of 1990 specifically; in particular, they felt that they were inadequately reimbursed for accommodations.” Many participants also conveyed “explicit bias toward people with disabilities and described strategies for discharging them from their practices.”
This bias can decrease health outcomes for women with disabilities when it comes to reproductive and sexual health as well. A study in the Journal of the American Medical Association (JAMA), Access to Reproductive Health Services Among People with Disabilities, reports that “people with disabilities are disproportionately more likely than those without disabilities to have poor health, more health care needs, and gynecological cancers yet are less likely to receive gynecological cancer screenings and timely and consistent prenatal care.”
Terri Guy of Phoenix, Arizona, has experienced this firsthand. Terri, who is extremely hard of hearing and has multiple sclerosis, started experiencing gynecological issues when she was nineteen. By twenty-six, she had miscarried once and then lost twins when they were born too prematurely. Still, she was dismissed by her doctor. “It has to be something you’re doing,” he said. Six months later, after undergoing a full hysterectomy due to significant pain, bleeding, and endometriosis, she learned she actually had stage three cancer of the uterus.
Women with disabilities are also disproportionately scheduled for surgical births without clear medical reasons. Beth, a wheelchair user, and her medical team had planned a vaginal birth, but as labor progressed, her doctor decided to conduct a C-section. “He was mainly concerned about my ability to keep a clean field in terms of bladder and bowel function,” she recalls.
The Barriers Are What You’d Expect—and More
When considering barriers to healthcare for women with disabilities, limited physical access looms large. All twenty-two participants in The Journal Health Affairs study reported physical barriers to providing health care for people with disabilities. “Nine times out of ten, the doctor's office is not prepared to assist somebody in transferring from their wheelchair to a piece of medical equipment,” Beth continues.
Communication Barriers Also Exist
Harvard Professor of Medicine Dr. Lisa Iezzoni, who was one of the authors of The Journal Health Affairs study, added “There was virtually no interest in doing something like hiring an American Sign Language interpreter if somebody was deaf and that was their preferred mode of communication,” she told NPR in a 2022 interview. “And so that was also true for people with intellectual disability that, although best practice is to speak directly to the person with intellectual disability, no, these doctors said that they would speak to the companion or the person accompanying the patient.”
According to Glenda, a young woman living in Portland, Oregon, it’s not just that doctors who don’t speak to her, but “sometimes they don't listen, because it's hard for somebody with autism like me to communicate well when I'm in pain or sick.”
These challenges are compounded by limited transportation options. Eighty percent of non-driving adults with disabilities cannot do the activities they need or like to do because they lack transportation, according to the National Aging and Disability Transportation Center, citing a 2018 survey conducted by KRC Research.
When public transit is available, practices such as a failure to announce the stops, out-of-order elevators and lifts, and drivers who don’t always stop for people with disabilities can make seemingly simple trips difficult or impossible.
Paratransit or “Dial-A-Ride” services have their own set of issues, including restrictive eligibility criteria, slow service en route and tardiness or failure to show, according to a report by the American Association for People with Disabilities.
Limited financial and insurance resources augment the problem. In 2021, the Department of Labor reported that “women with disabilities are more likely to have low income or to live in poverty compared to men with disabilities and both men and women without disabilities.” They are also more likely to use public health insurance, which further limits doctors’ availability. “Medicaid pays lower rates,” Professor Iezzoni said in a Los Angeles Times article, referring to the lack of maternal care for women with disabilities. “Sometimes they (women with disabilities) would have gone to seven or eight or nine doctors to try to find someone to agree to deliver their baby.”
The barriers to healthcare for women with disabilities may be many, but there are solutions, which we’ll explore in “The Doctor Won’t See You Now,” Part Two: Surmounting Barriers to Healthcare for Women with Disabilities.
About The Author: Cindy Brown Is A Fellow With The Loreen Arbus Accessibility Is Fundamental Program, A Fellowship Created With Women’s ENews To Train Women With Disabilities As Professional Journalists So That They May Write, Research And Report On The Most Crucial Issues Impacting The Disabilities Community.
