January is Cervical Cancer Awareness Month but, according to research, there continues to be a service gap for those with disabilities. Despite the American Cancer Society's efforts, industry-related research estimates that 14,480 people will be diagnosed with an invasive form of the condition this year.
Research done by UK charity Jo’s Trust in 2019 found that 63% of those surveyed – all disabled people – had been unable to attend a cervical screening because of their disability. This follows a long-term trend in a lack of access. Data from the CDC dating back to 2013 place cervical cancer screening rates significantly lower for those with disabilities as compared to those without, and more recent data from the NHS shows a radically lower rate of screening for those with intellectual and developmental disabilities.
But where are the barriers? As one person, Fiona Anderson told Bustle in 2019, the issues include physical access, but also the perception that disabled people are not sexually active and are not in need of support in this area of care.
"Doctors think because I’m a wheelchair user, the risk of cervical cancer will be lower. They assume that, as a woman with disabilities, I’m not sexually active so there’s no point referring me to a women’s hospital.”
The lack of sexual education for those with disabilities has been a long-researched issue, as this piece from Ariel Henley at Teen Vogue can attest, and yet we still see testing rates far below those without disabilities. Much of the writing done about the topic of sexual education and sexual health is focused on the rampant levels of assault and abuse facing disabled people. According to Statistics Canada, in their research, “Women with a disability (56 incidents per 1,000 population) were close to twice as likely as women without a disability (29 per 1,000) and about 14 times more likely than men without a disability [...] to have been sexually assaulted.”
Which begs another question. What can and is being done to increase access? For their part, Jo’s Trust provides free information on their website to help inform disabled patients about what the testing entails. The British government has produced an informational guide focused on those with intellectual disabilities and reminds doctors that they are legally required to provide reasonable accommodations. Still, structural issues exist.
In a May report filed to the White House and Congress, the National Council on Disability called on the government to create what they called “Federal regulations requiring the availability of accessible medical and diagnostic equipment in health care facilities.” It’s clear that more work needs to be done in order to make all medical care, but particularly cervical cancer screenings, accessible. As one patient quoted in the NCID’s report shared:
“I told my doctor I couldn’t do it [transfer safely from a wheelchair for the examination], and he was like okay and that was that. And so I went like 5 years without a Pap smear or a mammogram [...] He tried to do it sitting in my wheelchair, but I said 'no.'”