Many folks with chronic illnesses regularly use “disability aids” to help them move through the world and do the things they need to do on a daily basis.
Some need mobility aids like crutches, scooters, or wheelchairs. Others need permanent ports in their chests to make the administration of regular doses of medication easier. Yet others need braces, cooling vests, or supportive tools.
The problem is, these items are oftentimes stigmatized. Rather, the people using these items are stigmatized, pitied, looked upon with raised eyebrows. This makes some — including yours truly — reticient to use these aids or reveal them in public.
I was thinking about this subject during a recent conversation with fellow writers as we were discussing our disability aids. I mentioned how I was worried about being able to sit through an upcoming evening game at Fenway Park in Boston to see my beloved Red Sox play. Multiple sclerosis has damaged a part of my brain that regulates my temperature, so that when I’m in a place where it’s hot and/or highly humid, I immediately start to feel ill. Symptoms can include vomiting, stars in my peripheral vision, leg weakness, and dizziness. I can begin to feel “normal” again once I cool off. (This is the reason why, after I take a shower, I need time to cool off before getting dressed, otherwise I’ll become sick.)
When I saw the forecast for this Sox game — temps in the 80s — I was concerned. In order to make it through the game, I’d need to rely on a host of disability aids like a specialized (and very unfashionable) velcro-enclosure cooling vest, cooling cloths, and pressing a series of ice packs onto my neck and in my hands.
A writer who lives with life-threatening allergies — Sandra Beasley, who wrote, Don’t Kill the Birthday Girl: Tales from an Allergic Life –– said she has to tote an Epi-Pen with her everywhere she goes in the event she accidentally ingests something that could kill her. Beasley said she has had to explain to venue personnel at events she’s attending what it is and why she needs it. She encouraged me not only to attend the game, and to openly and unabashedly use my disability aids, but also suggested I create an Instagram challenge where I post a picture of myself wearing that hideously ugly cooling vest, a way to destigmatize it. I was too shy to use some of the hashtags she suggested, like #hotgirldisabilitysummer, so I came up with the more anodyne hashtag: #hotdisabilityaidsummer.
A post I’ve written for The Mighty, promoting the #hotdisabilityaidsummer challenge, has been published, and others have been joining in on Instagram.
The first image on this post was shared by Jessica Gregory, who goes by the nickname “Delicate Little Petal” on Instagram. In her #hotdisabilityaidsummer post about her crutches, Jessica wrote, “I’m freshly vaccinated and looking forward to my first sexy summer on four legs!”
Author Elissa Dickey (second image), a fellow MS patient who suffers from heat sensitivity, shared a pic of her face next to a fan.
Writer Jennifer Steil (third image) posted a photo of herself wearing the neck brace she needs to don when she’s writing because she said, “My neck is held together with titanium. I have occipital nerve damage and cervicogenic chronic nerve pain.”
Collectively, I’m hoping that #hotdisabilityaidsummer will at least encourage those with chronic illnesses to be less embarassed by their disability aids. I know that I have been less afraid to don my cooling vest as a result of the challenge.
Here’s the link to my original Instagram post.