In 2007, Elizabeth Pegnetter was diagnosed with multiple sclerosis, a disease that impacts the brain and central nervous system — and can be disabling. For Pegnetter, MS mostly affects her legs, which sometimes become spastic and move erratically. When she visited her OB-GYN for her annual exams, her doctor seemed to grow increasingly annoyed with her unwieldy limbs.
“It was almost like she was mad at me because of what my legs were doing,” Pegnetter, 35, an administrative assistant in Pittsburgh, told TODAY. “I have no control over that. So that was instantly very frustrating for her to think I was doing this to be a jerk.”
After that experience, she felt uncomfortable with her doctor. She saw that physician for about three years but the visits became harder, both physically and emotionally.
“Even if I could get my legs to relax the moment anything would happen, they would stiffen up,” she explained. “It is almost like they were afraid.”
Finally, her doctor recommended Pegnetter try the Center for Women with Disabilities at UPMC Magee-Womens Hospital in Pittsburgh. From her first visit, she felt at ease.
“They could accommodate me accordingly,” she said. “It’s nice to know that I’m not alone.”
Pegnetter’s experience is common. Women with disabilities often struggle to find appropriate OB-GYN care and it has a huge implication on their health.
“Women with disabilities are half as likely to get normal care,” Dr. John Harris, director of the center at Magee told TODAY. “People with disabilities are much more likely to report not seeing a doctor due to cost.”
Every woman deserves care
Women with disabilities see a variety of doctors, which can mean annual OB-GYN exams are skipped and they don’t receive regular screening for breast and cervical cancers. What’s more, these women don’t have access birth control, family planning and sexually transmitted infection testing. Sometimes when they do approach doctors for birth control, the response is dehumanizing.
“Women with disabilities are often not understood in our culture, even by physicians, as being people with sexual lives and desires, desires for family and parenting and children,” Harris said. “You want to approach them and not judge people for what we think is happening in their lives.”
Some physicians feel uncomfortable providing care for women with disabilities. That’s one reason why the University of Michigan Medicine Von Voigtlander Women’s Hospital in Ann Arbor started its clinic for women with disabilities in 1985.
“One of the faculty … had a daughter with Down syndrome and found that there was really a lack of knowledge and providers who are willing to take care of her or felt uncomfortable taking care of her,” Dr. Susan Ernst, director of the OB-GYN clinic for women with disabilities at Michigan, told TODAY. “We provide an area of expertise and experts who understand the challenges that women with disabilities face.”
Harris said Magee hopes its center prepares obstetricians and gynecologists to better care for women with disabilities — even if they don’t work in a specialized clinic.
“Everyone deserves to have high quality care regardless of where they go,” he said. “We want to help teach providers and help patients to start to expect this care wherever they go."
An annual exam is also important because doctors assess patients for signs of abuse. According to unpublished Justice Department data, found by NPR, people with intellectual disabilities are seven times more likely to be victims of sexual assault.
“Women with disabilities are more likely to be victims of sexual abuse or intimate partner violence,” Harris said. “We want to open up conversations about these difficult topics … and watch out for people who are very vulnerable.”
Providing OB-GYN services to women with disabilities
Both centers, only two of a handful in the country, treat women with physical and intellectual disabilities and each group faces different challenges. The clinics provide physical accommodations, such as wheelchair ramps, larger scales and tables that lower and have straps. Such adaptations help women feel welcome.
“They made it very comfortable for me,” Jocelyn Banks, 42, a quality assurance agent in Pittsburgh, told TODAY. “I was actually surprised they had the equipment that they had, like special stirrups or the table that goes all the way down.”
Banks has cerebral palsy, which occurs when abnormal brain development prior to birth cause physical impairment, and visited a gynecologist first when she was 13. She didn’t see another gynecologist until she was 26, partially because she knew how hard it was for her to visit a doctor.
“They are very respectful and accommodating, which is very unusual when you’re dealing with a disability,” she said. “They do what it takes to make a person with a disability … feel comfortable.”
Ernst said that make even small changes makes it easier for patients and ensures that they return.
“We really will do whatever they need us to do to make them the most comfortable to do the exam,” she said. “Whatever position they need to be in. We have a lifting team that helps lift and move them if they need that and we have a medical assistant who can help.”
Caring for women with intellectual disabilities doesn’t always have as many tangible differences. Being patient and understanding, while using a variety of educational tools helps. Chloe Rothschild, who has autism, lives in Ohio, but travels 45 minutes each way to Michigan for appointments. Before this, her annual exams felt unnerving.
“I felt that the doctor did not know how to help me. The doctor seemed scared of how my behaviors, such as screaming, would disrupt other patients,” the 27-year-old told TODAY via email. “I was never touched because I am sensitive to touch. It was like I was walking on egg shells.”
Simply being at a clinic that understands that some might cry out or move erratically puts Rothschild at ease. She also appreciates that they explain things in a way that makes sense to her.
“(They) are ALWAYS taking extra time to answer my questions, talk with me and making sure I am comfortable, talking with my parents and caregivers, explaining things visually in a way I can understand with pictures or dolls,” she said. “I feel understood and supported.”
Harris hopes someday every practice offers such services.
“I would love to work myself out of this job with all these women being taken care of in their community rather than coming to a specialized center,” he said. “In the meantime, I really love this opportunity.”