January is Cervical Health Awareness Month. Here at O.school, we are highlighting stories about barriers that prevent folks from accessing the gynecological health care they need and deserve.
I have a mild form of cerebral palsy, and certain medical treatments can be difficult for disabled people depending on the category and severity of their disability. I have mobility issues, so my body doesn’t function the way I always want it to. I can’t hold my own legs up, and at doctors’ offices, my body tenses from fear of possible pain and my legs will shut themselves. I remembered the struggle of getting catheterized for a bladder infection as a kid, and I worried that going to the gynecologist for a Pap smear would be similar.
Because the doctors at that clinic specialized in treating people with all kinds of disabilities, the office was equipped with electronic and manual lifts. So I knew that at least the logistics of getting onto the exam table would be relatively easy. More hands would be needed to help me position myself once I was on the table, so my mom came with me to the appointment.
My gynecologist that day was a woman, and she was super gentle. The procedure definitely wasn’t comfortable, but I was never in any pain. She didn’t even use the speculum during the Pap smear, and when she did the pelvic exam, I didn’t even realize what was happening until I felt her finger. Because my first gyno experience had gone so well, I assumed every gyno visit after that would be just as easy. I was wrong.
By the time my next yearly visit came around, the clinic only had a male provider available, and I wasn’t comfortable with that. Because there were no other accessible clinics in my area, I didn’t get a Pap smear for two years. Eventually, I did choose to see the male provider, and though he was gentle, he used a speculum during the Pap smear, making it more uncomfortable. Then he chose to scrap the pelvic exam altogether because he noticed my body tensing up and told me that it would be “too painful” for me. (I knew it wouldn’t.)
According to the CDC, 26% of adults — or 61 million adults — in the United States live with some type of disability. One might think, then, that providers would consider the intentional and necessary healthcare that we require — but they don’t.
In fact, the CDC reports that 1 in 3 disabled adults do not have any kind of healthcare provider, so going to the gynecologist isn’t as easy for disabled people as it was for me during my first visit.
According to 2017 CDC cancer research, the rates for cervical cancer screenings among people with disabilities are lower than rates among people without disabilities. 60-80% of disabled women ages 21-65 reported having a Pap smear compared to 81% of women without disabilities. This disparity happens for a variety of reasons, including transportation access, long wait times, and the ability to make appointments. Even though women whose doctors recommended cancer screenings were more likely to get the recommended tests regardless of disability, disabled women were still less likely to get the recommended tests compared to women without disabilities.
However, these issues aren’t just a U.S. problem.
A South Korean population-based study found that women with disabilities were less likely to undergo a cervical cancer screening, and in the U.K., a woman was denied a screening due to her muscular dystrophy. She told BBC News, “The rooms were too small for my wheelchair to fit in and there was no hoist or wide bed for me to use… They said there was nothing they could do, and that went on for 10 years." Not being screened for 10 years because of ableism in medicine is dangerous for many reasons. For one, it is harder to treat cancerous or abnormal cervical cells when they aren’t detected until later stages. When cervical cancer is detected at an early stage, the five year survival rate is 92%. If the cancer is diagnosed at a late stage and has spread to other tissues, organs, and lymph nodes, the five year survival rate drops to 56% — and finally to 17% if the cancer has spread to “distant parts of the body.”
Human Papilloma Virus (HPV), an STI transmitted via skin to skin contact, can cause precancerous cells to develop in the cervix, which can result in cervical cancer if left untreated. However it usually takes 10 years or longer for those cells to become cancerous, which is why regular Pap smears are so effective. But because of the assumption that disabled people don’t have sex, STD testing is more difficult for that community — plus there is a misconception that a person who may not have penetrative sex is not at risk for contracting HPV.
Because of these stories and statistics, I wanted to talk to four women with disabilities about challenges they encountered at the gynecologist.
Grace Lepoint, a woman in her early 30s, talked to me about how appointments at doctors’ offices in old buildings made her experience more difficult. “The first OB-GYN I was referred to by my GP [practiced] in an old Victorian house, so it was very inaccessible,” she explained. “The doctor met me in an examining room on the ground floor. For my follow-up, she asked me to meet her downstairs in her office. I was confused and upset because she knew that I was disabled and that only the ground floor was accessible to me.” An older building can make going to the doctor so impossible that a person may give up on screenings completely. So, once again, we are put at risk for a later diagnosis and fewer treatment options.
A woman who wishes to remain anonymous told me about her experience being called a “late bloomer” during an aggressive appointment. “It was miserable. The nurse was really brusque the whole brief time she examined me. She shoved a Q-tip in me and it barely fit; a female doctor saw me for, like, five minutes and dismissed me as a ‘late bloomer,’” she said. “[But my] second gyno visit at 19 was with a very old male doctor. I’m talking flowing white hair [and] at least in his 70s. [He] used respectful language, left the room while I put on the gown, told me what he was doing before he did it, and, in about five minutes, diagnosed me as likely having no uterus and vagina — only a dimple, no canal. [He was] very calm and reassuring the whole time.” This latter experience shows us what a gyno visit should be like for everyone. A doctor who is calm, respects your privacy, and speaks in a non-intimidating way.
Another anonymous woman shared the pain of being dismissed after telling a provider about her sexual assault. “I was very upfront about my trauma history when I made the appointment,” she said. “I told them I had PTSD... and I would need the gyno to talk me through everything.”
The woman continued, “The doctor came in and immediately started asking about what I eat [and] if I wanted to talk to her hypnotherapist friend about weight loss… [She] asked me about sexual partners and I said I was raped [in 2010].” When the gynecologist asked the woman about STI tests, the woman mentioned that the rapist had worn a condom: “[The gynecologist] laughed at me and said, ‘A rapist who wears a condom?’ She scoffed as if I was making it up… I worked with my therapist for weeks building up to that appointment, and I had finally accepted that I needed to take care of my health even if a stranger touching me was horrifying. [The doctor] completely disregarded my fears, feelings, and trauma. I haven’t been back to a gyno since.”
As disabled people, our needs are already dismissed, so to have our traumas also dismissed is more salt in the wound. When we aren’t physically handled in an appropriate, safer manner during a medical exam, that can then develop into its own trauma, too — preventing us from seeking another provider.
Advocating for ourselves in these kinds of situations can be difficult, especially if a doctor is intimidating — but sometimes we decide we’ve had enough. Earlier this month, Heather Watkins tweeted that, when her doctor’s office only had an inaccessible exam table, she filed a complaint with the Patient Advocacy Department “and that exam table was present [at the] next office visit.”
When I asked Heather about this experience, and why she spoke up, she explained, “[I had to be] examined in a regular chair because I couldn't step up and onto the exam table. It was frustrating, and given that they see a large population of elderly and disabled folks, I felt something needed to be done so that we all benefit.”
Heather is right. Disabled people deserve access to good health care so that we can benefit from tests and preventative screenings, like Pap smears, that keep us safe. Cervical cancer doesn’t discriminate: More than 12,000 women will be diagnosed with cervical cancer each year, so access to this care shouldn’t be this difficult. I’m fortunate to have eventually had a positive experience with a gynecologist, but a lot of the disabled community has not.
So what can we do about this problem?
Educating doctors about accessibility and sensitivity is a start, but we need those same doctors to rid themselves of learned biases against disabled people. We need providers that listen to our needs, and disabled people should act as consultants for the medical community. If we’re heard, then maybe medicine will change. I hope my story, and these women’s stories, are a start.