(First off, a disclaimer: what follows is by no means intended to make you feel bad if you haven’t been using “ideal” language to describe people with epilepsy, unless you’ve been purposefully going around disparagingly shrieking “epileptic”/teasing kids with epilepsy on the playground/wreaking general havoc on the epilepsy universe, in which case I have many, many labels much worse than the one by which this entry is inspired that I could and am tempted to apply to you. Please excuse the slightly belligerent aside.)
Nikki Porter’s recent article on behalf of Epilepsy Ontario in HuffPost Canada hit on some crucial points regarding epilepsy terminology issues.
I’ve known for a while that “epileptic” isn’t really PC anymore and arguably shouldn’t be uttered unless by a person with epilepsy who’s chosen to use it as a self-descriptor (I’m aware, however, that there isn’t widespread understanding that there’s a problem with the term—I’ll come back to that later), but in the past I processed this in the same way I do the passive knowledge that it isn’t great to eat cookies after the “best before” date: I tried to avoid both behaviours but sometimes slipped up and forgot the rules and ended up using the E-word or cramming a stale Oreo down my throat.
In truth, “epileptic” has always made me uneasy, though I hadn’t put much effort into pinpointing the source of my discomfort. (Interestingly, “epileptics” provokes a much stronger, almost visceral reaction; strange how pluralization makes such a huge difference.)
In this HuffPost piece, Porter quotes a woman whose statement made me realize why “epileptic” isn’t a word with which I want to consciously associate myself:
“Epilepsy is something that I have, not something that I am.”
In sum, then, it’s an identity thing. As a consequence of being assigned the nominalization of an adjective roughly meaning “pertaining to epilepsy,” I feel like I’m in some bigger way said epilepsy, and I find this idea bothersome; as I wrote last month, it’s extremely important to me to keep the separate threads of my life, particularly the “sick” and “healthy” ones, as untangled as possible.
I’m not suggesting that people with epilepsy shouldn’t call themselves “epileptic” if they decide to do so; personal preference is totally legit, and that’s their prerogative. I also get that many people, especially those who don’t have epilepsy, haven’t had a reason to think about why the noun could be hurtful, and I certainly won’t hate you if you (accidentally) use it.
That said, there’s another important factor to consider when reflecting on the potential implications of moving away from the term “epileptic.” Indeed, Porter cites research whose results seem to indicate that “people with epilepsy” are judged by others as being more capable than are “epileptics.” They might thus be less affected by stigma, endure less discrimination, and be more readily accepted into society.
She writes that “these three small words can have a profound impact on the lives of people with seizure disorders.” And for me, at least, I think it’s true, though maybe not to such a great extent: I don’t know if it changes how other people perceive me, but in some small way, being a person with epilepsy instead of an epileptic changes how I perceive myself.
De Morbo Sacro: Life and/with Epilepsy 
Yay for “people-first” language. We humans are so much more than whatever medical conditions or socio-cultural categories that pertain to us! I think with health issues, in particular, these subtle linguistic shifts also represent a really important resistance to many medical institutions’ and practitioners’ unintentional, ignorant, passive aggressive systemic process of disempowering people who are vulnerable to their massive authority. IMHO, it’s not ok, or healthy, for medical practitioners to see people who need their help solely as as patients or medical conditions, and whenever I encounter people who haven’t had the opportunity to politicize or grasp these powerful issues, I really just see the effects of oppression. Oh, the humanity! 😉 Thanks for an awesome blog! xo
Great post, K!
I found it interesting that although I’ve been around people with epilepsy all my life I don’t — happily– ever recall using “epileptic” to describe them (though I’d also never carefully considered the rammifications of doing so). It’s a good thing to apply to any illness or affliction — we are so much more than the things we fight through!
Hugs!