July is Disability Pride Month, so every week this month I’m going to share a post about something disability related – whether it’s personal to me and my life, or something more general and societal.
I talk a lot about accessibility out in the community, and it society – inaccessibility in the places I go the most, and the things I like to spend my time doing. But I’ve realized I’ve shared very little about accessibility in medical situations. I think that because people think of disability as a medical issue (rather than a societal one), they assume that healthcare must be accessible. I’m here to tell you that mostly… it’s not.
This is fresh on my mind because in the past two weeks, I’ve spent over four hours at the dentist, getting a number of cavities filled because it had been a few years since my last visit. Now, I get it – no one really likes going to the dentist. But for me, it wasn’t just that I was avoiding it – it was that I couldn’t actually find a dentist who was willing to work with me. Because of SMA, even the muscles in my mouth are weaker, and my mouth can’t open super wide. Dentists nicely, but firmly, told me they weren’t comfortable working with me. And while I appreciate that they were upfront about this, and didn’t mess up my mouth or my teeth, I wish their training involved solutions or approaches for more “unique” cases like mine.
Many dentists I tried to go to suggested a “special needs” clinic, but that wasn’t really a good fit for me, either – they focus on anesthesia for routine dental appointments, which is actually dangerous for someone like me with weak lungs. So basically, I just had to keep searching for a dentist willing to be creative and work with me – who was okay with me staying in my wheelchair and tilting back rather than transferring, and who worked to fill as many cavities as he was able to reach.
It’s not just the dentist, either. Before I got my feeding tube, I lost 10-15 pounds without realizing it… because I was never weighed at my appointments. My PCP does now have a wheelchair scale (which works if you know the weight of you chair, or can transfer out at least once), but it’s relatively new, and most other specialties just ask me to self-report my own weight. It’s easier, sure – but maybe I would have caught my weight loss issues earlier had I been weighed regularly.
And this past year was the first time I’ve ever been to a gynecologist who actually made me feel seen and heard as a disabled woman. It was a clinic specifically for women with disabilities, and it really did feel inclusive. There was a lift if you needed help to transfer on to the table, there was staff to help with positioning during the exam, and there was a physician who actually discussed sexual health and reproduction, which was a first in my whole entire life. It was incredibly affirming to get the same care that non-disabled people are used to.
I’ve mostly focused on specifics to my situation, but the small problems I’ve pointed out only get more problematic on a larger, systems or societal level. People who need ASL interpreters need to work to ensure their access needs are met, and are often relegated to using a virtual interpreter, which is not the same as someone being in the room with you. People who are physically disabled and also mentally ill basically cannot access inpatient treatment, because personal care attendants (PCAs) aren’t provided or available during their stay. And did you know that it’s still legal for parents to sterilize their adult children – that the most recent law to explicitly allow this was passed in 2019? Healthcare is more than just doctor’s appointments – it’s policies like these, too. So whether it’s physical accessibility or equitable policies, or somewhere in between, we still have a ways to go.