This video and article about a young girl (Pepper) with epilepsy whose parents were told that she couldn’t ride an accessible GO Transit car popped up in my social media feeds a few days ago.
As you might imagine, it made me so, so angry.
In the interests of encouraging you to click this link so that you can read the story yourself—and because I want to keep this entry short enough that I’ll finish and post it within a reasonable timeframe—I’m not going to summarize what happened more than I did in the first sentence of the first paragraph. I will, though, ramble a little as I publicly process how I feel about this. And yes, I’ll overuse italics and parentheses while doing so.
It shouldn’t be controversial to suggest that navigating the world, both literally and metaphorically, can be challenging regardless of the health status of the navigator in question; it also shouldn’t be controversial to suggest that people with a chronic condition/chronic conditions often face extra obstacles to maneuvering through the day to day.
I developed my primary chronic illness as an adult, after having twenty-odd years to get used to living a certain way, and I now find barriers to participation where I least expect them. It’s frustrating. It’s infuriating. It is how it is. #radicalacceptance
Over time, I’ve come to realize that when someone tells me I can’t do something due to my epilepsy, it’s usually because a) there’s a lack of awareness, or b) there are safety concerns, whether real or imagined. Neither option is great, but they’re both understandable, I guess.
What’s more challenging to accept is when there are obstacles and discrimination in spaces that are designed to be and designated as being accessible.
Indeed, situations such as the one that the Ly family faced beg many questions that I need to think more about before attempting to answer. What does “accessible” really mean in this context? “Accessible” to whom? Who is, and who should be, the “accessibility” gatekeeper? (I warned you about the italics.)
Because I have balance issues from a brain injury and from the side effects of medications, I use a cane to ambulate when I’m out and about. It can be a pain, and I sometimes complain about it. I also, however, recognize that my cane brings me benefits beyond the helping-me-not-fall-down one—it’s a visual cue that I need a seat on the streetcar, a little extra time, etc. It’s weird to say that I’m lucky to require a mobility device, but I am, in a sense, lucky to require a mobility device since it renders an invisible disability visible and reduces how frequently I have to explain myself to strangers.
Though I’m sure my own experience shaped this reaction, it bothered me that despite the fact that Pepper uses a wheelchair (whether or not her wheelchair resembles a stroller), all parties seemed to accept that it was the Ly family’s responsibility to justify why Pepper should be allowed to ride the accessible GO car. Something about that just doesn’t sit well with me.
I wrote three hundred more words rambling on about this, but I decided to copy and paste them into my “blog drafts” Word document and revisit them some other time. So instead of closing with those, I’ll close with the following, which is a little less, uh, impassioned and a little more diplomatic.
In my more generous moments, I’m good at remembering that change happens gradually; building awareness often mean self-advocating and being vocal about one’s needs; and people only know what they know. Yet an accessible GO train strikes me as a reasonable place to expect policies designed to, and staff properly trained to, respect the dignity, rights, and choices (e.g., regarding disclosure of health information) of those requiring accommodations. I hope that this incident inspires Go Transit to examine how it approaches interacting with customers living with medical issues; I suspect it will, thanks in large part to the Ly family’s willingness to bring its story to the media.
De Morbo Sacro: Life and/with Epilepsy 
Loved this post. I find my own teachers even though they’ve been around me for over 2 years now still don’t have the awareness they need or don’t get it. I try to be so open minded with everyone about it even when I’ve done internships but the older I’ve gotten the more it seems like people want to try to put me in a box.