“I’m Not Epileptic, I Just Happen to Have It”: The Problem with PFL, Part I

So, it’s been a while. If you follow the blog, you know that I promised you new stuff in August. If you happen to be alive, you know that it’s not August. It’s November.

Whoops.

However, this is a year of learning to forgive myself and take care of myself and all of that shit. So, in the spirit of that goal, I’ve decided to re-up the blog now because doing it now felt better than forcing myself to do it before I was ready to.

In that vein, figuring out what to post about in order to celebrate November was a difficult decision. November is Epilepsy Awareness Month, but I didn’t really want to talk about that right now, partly because I would have to do actual research and partly because, the farther I dig into systems which produce and regulate epilepsy as a cultural category, the more cynicism I have for big-name non-profits.

Regardless, I have several projects I’ve been working on that could have all qualified for the distinct honor of being the first post in an effing long time. I completed an interview in May regarding the relationship between gutting the ADA earlier this year and narratives of false disability. I thought about maybe starting off with talking about my hiatus and the desire to take time off. After a prolonged and, if I’m being honest, unnecessarily angsty debate with myself, the latter seemed to make the most sense. So, when I logged into my admin settings to begin a new draft, I saw the little orange circle illuminating my notifications bell. To my delight, I had several comments that I had not yet read nor approved.

 

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Real-life footage of me, happily going about my day before I realized what I was getting myself into. Source.

 

As you might know and as I’ve mentioned before, I used to write for the University of Minnesota Women’s Center blog during my undergraduate education. While I’m no longer a contributor, I still receive the notifications, and so I received a couple of loving “fuck you’s” regarding my work on toxic masculinity. I received some fun yet somewhat irrelevant tangents on other articles.

However, I received one comment which stuck with me. It made me furious. It made me sad.

This comment was from one of my own people: a woman with epilepsy. For the sake of respect for others and her privacy, I will not reference the article, the username of the commenter, and will only share the themes of the comment but not the comment itself. The article itself was a review of a book which shall remain nameless, but the story was about a woman with epilepsy. Three years ago, I reviewed this media and wrote a review because, spoiler alert: I didn’t like the book. I thought the representation was lackluster, and I thought that the author (an able-bodied man, by the way), while attempting to conduct thorough research by seeking out the guidance of women with epilepsy, ultimately fell to the trope of overcoming one’s disability through sheer willpower.

While the commenter had salient points about representation and the pros and cons of how epilepsy is not represented well in media (a topic which requires its own post), she ultimately took issue with my use of the word “epileptic.” According to her comment, she identifies as someone who “happens to have epilepsy.” Her issue wasn’t specifically about the word choice itself, but about my desire to claim “epileptic” as an identity. To her, I had insulted women like her who only “happen” to have it, and that saying otherwise was forcing others to be defined by their disability, which is hurtful and rude and blasphemous.

Listen. If you do not want to be called epileptic at any cost, I won’t call you that. When referring to other people that are not me, I actually do say “people with epilepsy” rather consistently because I know what it’s like when people call you things that you don’t like. I have dealt with people outside of my community trying to tell me how to be epileptic. It’s pretty much standard from diagnosis until death. I have had well-meaning friends, parents, colleagues, and even people with disabilities themselves tell me that things “aren’t so bad” and that I am someone who “happens to have it.” This kind of dismissal from people who don’t have my specific disability or are forming opinions based on little-to-no knowledge is not a new story for me. I have strategies to cope and deal with this type of dismissal, which are necessary because that’s exactly what that is. Despite the fact that it comes from a well-meaning place, telling someone they just “happen to have it” is dismissive because it ignores a huge part of what informs the daily life of someone with epilepsy.

However, the idea that I would have conflict with someone who is exactly like me was, I’m embarrassed to say, entirely unfathomable to me until today. When I decided to embrace epilepsy and advocate for my rights as an epileptic woman, I expected other women with epilepsy to disagree with me about how to live with it, what it means to them, and who they feel best represents their own story. That was never a question for me because the truth is that “epilepsy” is broad enough to encompass millions of women with their own experiences and their own stories that have shaped who they are and how they view the world, which is something the commenter mentioned— and which I agree with. As just one woman, entering their world and telling them how to be epileptic would be hurtful and hypocritical. So, I just comment on trends I see based on not only my personal experience but my professional knowledge as well. I’m not just an epileptic lady; I literally have a master’s degree in disability studies. I have served my time as a scholar and investigator of trends in disability, specifically studying epilepsy as a cultural category, and I am a professional who works with disability on a daily basis. I am both a personal and professional epileptic, which I think qualifies me to post my critical engagement with disability media every other five months two weeks.

This woman’s comment hurt me. That’s the hardest part to admit first because if it were coming from someone who didn’t have it and didn’t understand, it wouldn’t hurt as much. It would have been annoying and even angering, but it wouldn’t have lingered. It would have been another drop in a sea of ignorance that I could just write off.

But what does it mean when someone who is exactly like you claims to hate the word epileptic? What does it mean when someone, on behalf of your own community, uses the same tactics of dismissal used by the able-bodied to disregard your experience? What does it mean when someone from your community shuts you out and your experience as a member, despite both of you meeting the prerequisite?

For the sake of space, since this is already a long, long post, we will focus on the crux of this commenter’s argument. The issue is that no one is “epileptic.” In fact, that’s insulting. No, we must call one another “person with epilepsy” or, more importantly, “x has epilepsy.” This semantic distinction, in my opinion, is a direct result of the people-first versus diagnostic language debate.

The people-first language versus diagnostic language debate has been around as long as I can remember. There was no official starting date to this particular argument, but in the late 1970s and early 1980s, a group of activists decided that, in order to prop up the current disability rights movement, they would argue that individuals with disabilities should be referred to as, well, “individuals with disabilities” as opposed to “disabled individuals.” The idea of Person-First Language (PFL) is that, if you discuss someone’s disability by introducing them ahead of their disability, then you are affording them their humanity that is otherwise removed when using diagnostic language. The Arc, a non-profit organization for people with developmental disabilities, explains person-first as the following: “By placing the person first, the disability is no longer the primary, defining characteristic of an individual, but one of several aspects of the whole person. People-First Language (PFL) is an objective way of acknowledging, communicating, and reporting on disabilities. It eliminates generalizations and stereotypes, by focusing on the person rather than the disability.”

It’s a statement with the best of intentions. Several medical scholars and organizations have argued that person-first language is crucial because it does two things: 1) disability is removed as a defining characteristic, therefore presenting the person as a whole; and 2) Because PFL is objective and all-encompassing, it removes generalizations and stereotypes. Overall, the goal of PFL is to give people their humanity back by looking at the person who happens to have a disability.

 

examples of person first language

A chart with examples of Person-First Language, the left column being the “right” way to address a person with a disability and the right column being the “wrong” way to address someone with a disability. Note that the “wrong” category includes the word “crip,” which has been taken back and used by many disability rights activists for some time now. Additionally, all of the “wrong” words are awful insults but the chart does not address the largest source of debate which is the semantic distinction between phrases like “disabled person” versus “person with a disability.” Source.

 

There’s a lot to unpack here, so I’ll focus on the basics. I think the intention behind this is rather solid; their motivation is that language has importance and it informs the way we communicate with others and think about ourselves. This aspect of language is true, and I agree with it. However, PFL is prescriptive, meaning it suggests how language ought to be used. It doesn’t necessarily inform how language works in practice. Language is fluid and is built with each nuance of collective culture. Because language is informed by the nuances of interpersonal communication, language as a practice is subjective, not objective.

Breaking down the objective versus subjective uses of language takes more time than I want to spend so I will focus on the first objective of PFL I outlined earlier in the post, which was disability is removed as a defining characteristic, therefore presenting the person as a whole.

Let’s take a moment to really assess that standard. The idea that disability is used as a dehumanizing method has historical roots. Words such as “idiot”, “moron” and “feebleminded” were all varying diagnostic categories used by the medical community of the early 20th century to describe a variety of cognitive disabilities, including intellectual and developmental disabilities, behavioral disabilities, and psychiatric disabilities. Because these words were inherently hurtful and used to diagnose people during the eugenic era, these words have now become descriptive to refer to people we don’t like and people we think are in the wrong because they’re just “stupid.” It’s used as a form of dismissal due to someone’s intelligence and general grasp of whatever concept you may be discussing. 

So, PFL became the longtime response to this historical use of these words. The purpose of PFL is to make others who would otherwise use hurtful words to describe people with disabilities recognize that the person they are talking to is a human being. I understand the motivation, and I think it’s a noble one.

But, because I’m an academic and an asshole, I have to let you know that there’s a catch. In practice, PFL is often used by able-bodied people to shame people with disabilities into referencing themselves “correctly.” PFL exists for the benefit of the able-bodied because it disregards the descriptive purpose of language within disability communities. PFL only works if everyone agrees that saying “epileptic” is objectively bad and dehumanizing, but having that standard doesn’t coincide with how language operates in practice. Saying that calling oneself “epileptic” is just bad ignores several facets of how an individual relates to a particular word.

Therefore, in practice, PFL operates as a way to tone-police people with disabilities about themselves, because…what? Without the hard and fast use of “people with disabilities,” every disabled person would look at themselves as monsters? Or, worse yet, without the linguistic cushion, people without disabilities would see fit to treat people with disabilities like shit? If it’s the latter, I’ve got news for you: people with disabilities are already treated like shit.

Like all things that have been produced at a societal level and regulated by societal function, there was no OG, Zule-like god who decided that having a disability meant being subhuman. I would argue, both as a historian and, again, as an asshole, that the codification of language during the Social Darwinian era followed by the American eugenics movement betwixt the years of 1830ish and 1950ish really solidified the idea that the concept of a “person” was relative to how much of a white, able-bodied, successful man you were.

 

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 Image from an early 1920s American photo archive on eugenics and “fittest families.” Edited by me for my entertainment and to prove a point. Original source.

 

Even after the first disability rights movement in the 1970s, we have changed how we reference disability, but we still have internalized that disability is always a bad thing. People with disabilities are still the most underemployed, most impoverished, and the most underrepresented group of people in this country. The idea that a linguistic standard which displaces disability is necessary in order to treat people with disabilities with respect regardless of how people with disabilities view themselves is simply a by-product of the internalization that disability must always mean subhuman. Because of this connotation of what disability must mean, referencing disability in any capacity can only be to refer to an individual’s potential level of subhuman. 

So, we have a basis for part one of this treatise. As an epileptic woman, I have often been told that me calling myself epileptic is “bad.” I’m reassured of my countless good qualities, that I’m “more than” my disability. Because of the cultural relationship we have to this prescriptive use of naming a disability, the response “you’re not (insert disability here), you are a person with (insert disability here)” is meant as a way of encouraging the individual away from self-doubt and self-hatred. We have internalized as a society that “being epileptic” somehow connotes that the individual referencing themselves as epileptic is languishing endlessly in their own suffering.

By reminding the individual with the disability that they are “more than,” the one committing tone-policing has tasked themselves with reminding the individual with a disability that they are in fact human. Because without that reminder, they clearly forgot that they are human. Calling themselves by their disability means that they are hurting themselves, regardless if they identify with person-first language or not. If you embrace having a disability, then you are considered as someone who hates themselves. After all, why wouldn’t you want to change yourself? You’re broken otherwise.

It’s because people have decided that an individual’s personhood, their existence as a human being, could only be dignified if they displaced their disability. The implication of this is that their disability mars their ability to be fully human. If we consider these phrases on a semantic level, saying “I am an epileptic” is one-hundred percent, literally the same thing as “I am a person with epilepsy.” Why then do we care so much about whether or not someone addresses us or if we identify ourselves by disability instead of someone who “happens to have it”?

I am not here to tell you to call yourself one thing or another. The thing about that woman’s comment is that, while she was proclaiming her acceptable identities with pride (her womanhood, her strength), she was also shutting out the possibility that disability could be a part of that pride. More so, she was dismissing members of her own community who embrace that part of themselves.

As a proud epileptic, my goal when I intervene in these social conversations is to think of epilepsy the way you think of being a woman. Or being black. Or being Jewish. These are facts about you, but they are also crucial parts of you that shape your identity and how you move about the world. They can be sources of pride, of encouragement. More so, they can be gateways to forming a community with someone exactly like you, of finding belonging with one another. You are not pitiful if you think of yourself as “epileptic” instead of “with epilepsy.” The thing about being “with epilepsy” is that there’s an assumption that it will leave you. At some point, it will leave you, and then you’ll be free of this dark, hateful thing that lives inside of you.

But what if that’s not your story? For just as many of us who will grow out of epilepsy or acquire it for certain periods of life, there are others for whom epilepsy will always be a part of them. What good does it do for those people to say you just “happen to have it”? What does that mean to someone who has always been with it and will likely die with it? Or, hoping that this is never the case, die from it?

There will be other days in which we discuss the muddier concept of what language in disability does or does not do. There will be other posts (I promise) in which I regale you with tales of how disability can be a cultural concept and how freeing yourself of conflating the objective with the subjective will free you from your linguistic bonds.

For now, though, I want to end by discussing one way these hurtful words have been taken back by the disability community. Sarah Mirk from Bitch Media interviewed disabled author and activist Caitlin Wood in which she discussed her love of the word “crip” and how she feels about using that word. “Crip” is obviously from the offensive word “crippled,” but according to Wood, “crip” used among people with disabilities acts as a signifier of community and belonging. To summarize her points, “crip” is not a word for the able-bodied to use. It’s a word that has derogatory origins that now serves as a form of connection from one disabled person to another within their own community.

While I am personally lukewarm about the use of “crip,” Wood’s commentary on that word is exactly how I feel about the word “epileptic.” I don’t want non-epileptic people to use that word. I use epileptic because, for me, it signifies a sense of community and belonging. After years of both academic study and personal experience, I can confidently tell you that epilepsy means so, so many things. It manifests itself in millions of ways, and as expressed in Seized by Eve Laplante, seizures can often just be excessive showings of things that already make us human, like laughing out of place or crying for no particular reason. My embrace of epilepsy does not serve to ignore or dismiss how difficult it is to live with epilepsy, but I can personally cope more easily if, instead of displacing it from my holistic view of myself, I embrace it and let it be something I’m proud of.

By calling myself “epileptic” instead of calling myself “a woman with epilepsy,” I recognize that this huge part of my life informs who I am and, more importantly, who I want to become. I want the world to know that I am proud and unashamed of my disability, so why not use the language that, in my opinion, best fits my unapologetic pride?

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Members of the group Diversability at the New York City’s 2018 Disability Pride Parade. Source.