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What if women with disabilities were recognized as sexual beings?

Lene on the hurdles women in wheelchairs face in getting proper reproductive healthcare

A few months ago, I cracked a joke about disability and sexuality. It needed follow-up, so here is a post for CreakyJoints from my archives about disability, sexuality and a particular blind spot in the medical profession.

The other day, I meandered into the clinic for my shot and had a chat with one of the nurses about the exam tables in the clinic. Not that they are any different than exam tables in any other doctor's office in the city. In fact, I didn't know there was an alternative to the 5-mile high fixed table o’ torture until I for a mysterious administrative reason had to sign in at the MS clinic for an appointment with my rheumatologist. In there, all the exam tables were adjustable! It blew my mind.

Just as you send in your car (or wheelchair) for annual maintenance, it’s a good idea to take your body in for a check-up. For women, this involves a Pap test. Not that I want a Pap test — I've yet to meet a woman who thinks that particular medical procedure is a hoot — but it's generally a good idea. Except for the inaccessibility of the 5-mile high fixed table o’ torture to someone with extreme pain issues.

The clinic where my family doctor practices has a higher-than-average number of patients who use wheelchairs, as my neighbourhood is very accessible. After the nurse had given me the number for the person in charge of equipment buying and we’d exchanged a mutual (and cynical) “probably not in the budget” sigh, I asked her what the clinic did for women with disabilities who needed a Pap test.

If possible, she’d would be lifted up onto the table. Or, if she had a tilt on her wheelchair, an internal exam would be done in the chair with additional clinic staff holding the woman’s legs to provide access for the doctor. I opined that although having an internal exam is not the most dignified of events, this seemed excessively undignified.

The nurse also mentioned that they’d once had a trauma chair that could be repositioned into a bed. It had been removed when the storage room was made into an additional exam room, "so they could serve more people." As the nurse was not the person making these decisions, I chose to bite my tongue around the statement that expanding their practice had essentially served to block a percentage of their patients from having equal access to medical care. I

Fifteen percent of the population has a disability. This is on the rise with the aging baby boomers. An adjustable table would serve all patients, not just people with disabilities. And this is yet another example of how barrier-free design benefits everyone. It’s called universal access. I wish more places would think about that.

But barrier-free design is not the issue of today's rant. Barrier-free thinking is.

I've used a wheelchair since I was 16. I have yet to have a doctor initiate a conversation regarding my crotchal area, maintenance of same, sexuality or contraception. About a decade ago, it was decided I should go on methotrexate for my RA. My doctor went through possible side effects with me and was making the final notes in the chart, wrapping up the appointment, when I piped up and asked about how the drug causes birth defects. My doctor froze for a second, looked up with an utterly gobsmacked expression and asked "are you sexually active??"

In our culture, this isn’t an unusual thing to consider of a single woman in her 30s, right? Except, apparently, when the woman uses a wheelchair. A study in the US reveals that women with disabilities are underserved in reproductive health care. For instance, when women with disabilities visit an OB/GYN, they are 20% less likely to receive a Pap test than are able-bodied women. The guideline for Pap tests is that all women who are/have been sexually active should have one every two years until the age of 70.

The world prefers people with disabilities to be asexual and if you're a woman with a disability, asexuality is practically a requirement. There's a substantial ick factor in attitudes toward disability and chronic illness. This means that if you have a partner, s/he is automatically viewed either as saintly (because the relationship couldn't be other than longsuffering caregiver to the poor sick person) or creepy and perverted (because only someone who is disturbed could be attracted to the poor sick person). The person with the disability is not considered at all. Apparently the role of tragic cripple is incompatible with sexuality to the point that the genital/reproductive area is not just an empty space, it’s a non-space. It doesn't exist.

The problem is that this preference for us to be potted plants affects not just the public’s ability to refrain from staring when a couple is holding hands in public or gush messily about how saintly a partner is. It affects health care delivery. Imagine what would happen if people with disabilities were recognized as sexual beings. Imagine what would happen if, amid all the programs for physical and social rehabilitation, there were some for sexual education. Which might include talking about what to do in case of abuse, highly useful as one study reports that 40% of women with physical disabilities (an insanely high number) report being sexually assaulted. Or such initiatives could talk about ways to facilitate a healthy sex life and provide information regarding alternate ways of having sex and contraception. And how to get your doctor over the ick factor so they’d offer a Pap test.

Of course, that would involve doctors buying adjustable examination tables and that, apparently, is not in the budget.

 

Lene writes the award-winning blog The Seated View. She’s the author of Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain and 7 Facets: A Meditation on Pain

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