Okay, listen. I know it’s been longer than a week, but here’s the thing: it’s my blog. I can do whatever I want.
On that note, I spent hours thinking about what I should write about for my first post. Originally, I thought I would write about what epilepsy is, but I decided to save that for next week, simply due to the fact that it requires much more time than I have. So, in lieu of explaining the basics of epilepsy, I have decided to start off with something light.
Many of us with epilepsy or invisible disabilities in general have experienced the awkwardness and terror of coming out “crip”. “Coming out crip” is a concept borrowed from crip theorist Robert McRuer, in which he argues that disclosing one’s disability can be examined in relationship to the process of coming out as queer. The concept of “coming out” in general and its relationship to disability is a long and storied topic that, again, requires more time than I have. I would rather write about the relationship between “coming out” and disability in a series of posts than trying to shove all of that information into a single paragraph.
In my particular case, my epilepsy acts like an invisible disability. This just means that the average person wouldn’t be able to tell that I’m disabled based solely on my outward appearance. As a result, I find myself “coming out” to others over and over…and over again. Don’t get me wrong; I don’t mind explaining that I have epilepsy, and I don’t mind answering questions about it. But, the issue with “coming out” in my experience is that I don’t generally receive the “Golden Response.”
In case you’re unaware, the “Golden Response” is a thing I just made up a few seconds ago which essentially goes like this: 1) I disclose my epilepsy, then 2) other human says something like “That’s interesting, but I actually don’t know that much about it. Could you tell me more?” This response is the “Golden Response” because, instead of trying to relate to me in an obscure or offensive way, this person is admitting that they don’t know what epilepsy is and that they are willing to listen to the expert in this scenario.
Now, this is the ideal response, but in real life, I rarely get this response. Instead, I get a series of weird, somewhat off-putting and, sometimes, downright insulting comments that can reaffirm or blatantly support misguided biases that we have about people with disabilities.
In short, I bring you the five responses you’ll get when you “come out ” epileptic:
1. “But you don’t look epileptic”
Wait, what does this mean? How am I supposed to look? What does one with epilepsy even look like?
I hate this response because it implies that people with disabilities “look” a particular way. It assumes that all disability is visible, and it’s usually implied that this amorphous “look” of the disabled individual is negative or undesirable to others (read: the able-bodied populace).
Moreover, this response negates my lived experience as an epileptic. By responding this way, it is assumed that, because I pass as able-bodied, I somehow succeeded in removing myself from the cultural and social stigma of being epileptic. The nature of this bias assumes that I should take pride in or congratulate myself on my ability to pass. The problem with this response is that it erases the reality of what it’s like to live with epilepsy. I will always have epilepsy, regardless of if you can see it or not.
2. “Oh cool, I have a (insert cousin, brother, sister, aunt three times removed, fictional vampire boyfriend, or other insignificant relation) with epilepsy”
This response is a bit more complicated to deal with. On the one hand, I somewhat sympathize with these responders. I understand that I’ve told them something that they may be unfamiliar with, or maybe they’re startled that I have epilepsy at all (see above for the brief comment on passing as able-bodied). I see this response as something someone says when they’re trying to work through this information I’ve just told them. The fascinating thing about epilepsy is that it’s so unbelievably common. Chances are, you know someone who has it, but the stigma surrounding both epilepsy and, more generally, disability is so strong that people are afraid to talk about it. Therefore, people know very little if anything about this disease that the people in their lives might have or will have at some point during their lifetime.
At the same time, I find that this is the way people address learning that someone has epilepsy in order to never speak of it again. Instead of asking additional questions, they feel that their rudimentary knowledge of my life with epilepsy can be somehow equated to the experiences of their distant relative that they might see once or twice a year. I don’t think people who respond this way are intentionally malicious, but I also think that intentions don’t really matter when the impact reinforces discriminatory attitudes towards people with epilepsy and other disabilities.
3. “Isn’t that the disease where you fall down a lot?”
I mean, this depends. Are you referring to generalized tonic-clonic seizures? If that’s the case, then yeah I guess, but there are many seizure types classified by the International League Against Epilepsy (ILAE). Additionally, many people with epilepsy, including yours truly, have two or more epilepsy types. The “falling down” seizures are actually less common than other types of seizures. You probably remember this particular seizure type, though, because they are the most deadly and the most visible to others while they are happening. Because this seizure type is so visible to everyone, it has become representative of all epilepsy, which then reduces our general understanding of epilepsy to one seizure type.
4. “Isn’t that the disease where you sleep a lot?”
No. That’s narcolepsy. I know the “-lepsy” bit is throwing you off. Feel free to blame the French for that. And the Ancient Greeks…or the Ancient Romans. Regardless of who’s responsible, just remember that this is an entirely different neurological disorder.
5. “I’m so sorry for you” or some variation of this
Ah yes, because my life lacks total meaning now that you’ve realized I’m no longer a person because of my epilepsy. You didn’t seem to feel this way prior to me telling you this while discussing some bullshit meme, but I ruined everything by revealing my demon form to you. Now, you see the TRUTH. No longer am I that fully capable person that held a conversation with you literally seconds ago. Now, I am clearly not your equal but merely a sad, dejected invalid who spends my days contemplating the misery that is my epileptic life.
The problem with this response is that, like the first one, it implies several biases we have about the quality of life for disabled individuals. We assume that because someone is disabled, then that person must be bed-ridden and constantly in a health crisis. We expect people with disabilities to not go to school or have jobs or contribute to society because our cultural perception of disability assumes that people with disabilities are incapable of doing these things. This is a classic conflation between capability and ability, which are completely different things.
The point is that I and anyone else with a disability will tell you that, yes, it can be painful and debilitating at times. That’s the important phrase, though: at times it is debilitating, but never always. Of course, this varies depending on the individual and the disability(ies) that one may have.
What makes this response discriminatory is not necessarily questioning the health of the person. It’s discriminatory because it questions the very possibility that people with disabilities can or should have access to a decent quality of life. When you say “that’s so sad,” you convey to me that my life is inherently less fulfilled and, by extension, less valuable than someone without disabilities or epilepsy in particular. Who I am as a person has been shaped by epilepsy, but epilepsy does not define me. I have made and continue to make important choices in order to improve my overall health. However, these choices don’t stop me from being able to live my life. In fact, they help me live a better life.
If you feel like you need to respond this way, I suggest doing some research to educate yourself on the several types of disability. You’ll learn invaluable lessons about the wide variety of ways in which people with disabilities live.
Alright, I think that’s enough righteous anger for one post. Please feel free to comment and let me know what you think, and keep an eye out for next week’s post!