Something happened recently that made me think about the importance of self-identification. I won’t go into details about this particular event, but it essentially was someone correcting my self-identifier as “epileptic” to something more politically correct, or PC as I shall refer it as from now on. To be clear, I’m not using PC in the negative, as in I’m tired of these terms and they’re useless. I’m using “politically correct” as the definition would suggest: the appropriate, correct way in which we refer to someone that isn’t the ultimate symbol of privilege, which is the young, cisgender, heterosexual, able-bodied, white, rich male.
Knowing this, the favored PC term in response to my self-identifier is “person with a disability,” which is a good term. There’s nothing wrong with that term, but it’s not what I use. I could (and did) rant for hours to various people about how that was disrespectful, and I felt like this person didn’t listen to what I had to say about the issue at hand. However, the person who did this did it out of a place of kindness. However, the exchange did remind me of some important barriers that have arisen due to the rise in PC terms for historically disadvantaged groups, such as (dis)abled, people of color, and the LGBTQA community.
Self-identification is basically when someone chooses a term, pronoun, or something that reflects their identity the best. Self-identification is empowering and important, and it allows those who have historically been silenced to have a voice. The important part about this voice is that these historically disadvantaged people made this voice for themselves. The importance of this is no one out of ignorance or condescension “gave” that voice to those people. It is also important to remember that someone’s self-identifier may conflict with the generally established and agreed upon global term for the group as a whole, which may result in people taking offense.
For example, I identify as an epileptic, not as a person with epilepsy. I identify this way mostly because it’s easier to say “epileptic” than “person with epilepsy.” While my term may go against the preferred communal term of “person with epilepsy,” I identify this way. Therefore, people should accept that regardless of their personal feelings towards the term. This goes for anyone who identifies as a term that goes against the PC or general term that the group or someone else may prefer. Despite the deep annoyance I feel when someone within the sex-positive community (a great community, I became an active member since I started feministing) wants to take the sexism out of the word “slut” by being proud to call themselves a slut, I don’t say anything. Maybe I’ll make one comment, just to appease this thing I have in which I can’t shut up when I think I’m right. But as long as that person doesn’t call me or others a slut to prove the same point, then I just have to respect that.
So, then, why is there that need to correct others? To tell them that the terms they chose as a part in naming themselves are offensive to themselves? I can only tell you based on personal experience coupled with the legitimate knowledge I have about activism as a social concept. So, my educated guess is that it’s not necessarily people within the community that demand all community members respect the global term in lieu of a personal term. It’s those outside of the respective community that insist on others calling themselves something socially appropriate.
The vague scenario I mentioned above is the not the first time I’ve been told to change my preferred term. When I was a sophomore in high school, I started writing on this epilepsy blog for community support. A few people commented on my two posts saying that I should call myself a person with epilepsy/person with disability/ woman with epilepsy/woman with insert word here, because I am a person with so much potential. I have so many talents, interests, and I have many roles as a capable human being. Essentially, rainbows shine out of my ass, but I just happen to be epileptic. It’s almost as I’m an epileptic by accident, and in no way does it diminish the good things about me. Additionally, I’m also told that because I’m part of this group, I automatically have to call myself something in order to represent the community in the best possible light. More importantly, these responses are from others who don’t necessarily belong to the community.
Despite many, many little things, I see three major flaws in this line of reason. First of all, telling me I’m so much more than my disorder is like telling me that real apples are healthier than a pound of Apple Jacks cereal. It’s true, but it’s not like I wasn’t aware prior to eating the Apple Jacks. Just because I talk about my illness or use words like “illness” or “disorder” doesn’t mean my entire life revolves around epilepsy. I’m a senior in college this year. I’m writing my summa thesis, which is about 40 pages minimum. I’m applying to PhD programs for next fall, which would include a relocation to another state. I have a job and I write for this blog. I’m an activist and avid volunteer within my campus community. I have great friends, a wonderful family, and a loving boyfriend. After reading this non-exhaustive list, do you honestly think I have the time to talk about my seizures every hour of everyday? Because that’s what I hear when people tell me I’m so much more than my disorder. It seems that these people assume I’m unaware of my contributions to society and the important roles I have. The assumption behind this statement is I dwell on the misfortunes of being the pathetic epileptic. While I think I appreciate your concern, I don’t need the pep talk. I enjoy the life I have, and talking about epilepsy doesn’t mean I constantly stew in my own sadness.
This brings me to the second flaw I’ve noticed. While this may not be true of all people with disabilities, I don’t just happen to “have” epilepsy. Epilepsy has played a major role in my life. My academics, my sleep schedule, my eating habits, my weight, and my general cognitive function and more are all affected by seizure activity. To say I just happen to have it is like telling someone with cancer that they’re just a person who happens to have cancer. While my situation is less terminal than having most cancers, I made the analogy because cancer and epilepsy, like any severe disorder, changes your life. It makes a huge impact on your overall health, which then affects other facets of your life. My life has forever been changed by having epilepsy. That’s not a “pity-me” statement; it’s a fact. Overall, I feel that the need for others diminish the impact epilepsy has on an individual’s life is due to the social stigma that surrounds having a disorder. Having some sort of illness automatically means you’re defective according to the general “society,” and diminishing the emotional, physical, and mental impacts associated with having a disorder is a warped way of combating that stigma. Essentially, you see this person as an equal only through ignoring something significant about themselves, which basically amounts to the “I don’t see color” response to racism. The thing is, you can’t ignore the thing that is used to discriminate against someone in order to fight discrimination for that thing. I understand that my talking about the issue at length gives off the impression that I am focusing on the negative, but I don’t write these things to do that. I have a right to talk about my life as affected by epilepsy without my experience automatically written off as a solely negative one. My neurophysical disorder results in a complicated relationship with that disorder because the disorder itself is complicated. Having been an epileptic for a good 21 years now, I have learned so much from having it. I learned to be a better person and accept others regardless of differences, and I learned to respect that those differences exist. Regardless of these differences, I have learned that the differences play no role in whether or not to treat someone with respect.
On to the third and final thing: while I am a member of the peoples with disabilities community, my individual voice doesn’t represent the whole of the community. I’m not Gloria Steinem or MLK. I’m not the face of functioning epileptics. My experience as an epileptic differs from someone’s experience living with cerebral palsy or autism. So, if I talk about my individual experience, I will use the term epileptic. However, I will use the term “people with disabilities” or “(dis)abled” when speaking about the general community, as I have always done. Including within this post and every post before that because I respect that my individual experience differs from the larger group. Despite using my voice to talk about stigmatization against the disabled community and in particular epilepsy, I am not an activist by default of being a part of the community. I chose to be an activist a long time ago, and it’s a significant role in defining my purpose. However, no one is automatically a representative of their respective community just because they identify with that particular community.
So, what have we learned? Although I know that there will still be some of you that read this post halfway and yet again correct my terms without bothering to read to the end, I’m still hoping some of you learned to respect someone’s self-identifier. If you’re still confused on how to respect someone’s identifier, remember: it’s not about you. If someone identifies as a term you don’t agree with or conflicts with the PC term, don’t say anything. If you don’t know what to call someone, just ask. The only compromise you’ll have to make when interacting with that person is to use the term they prefer, because that’s respectful. Correcting their term to match the umbrella, PC term is not only disrespectful, it makes it seem like you’re afraid of the topic. More so, it seems you’re afraid of having someone disagree with you. While it’s okay to be afraid of the topic, don’t let that fear dominate the conversation. Don’t let the fear of offending someone generally or the fear of disagreement change the course of the conversation. It is perfectly okay to be uncomfortable about topics like discrimination and diversity, because erasing stigma isn’t easy. The act of erasing stigma means talking about things that are uncomfortable and may or may not fundamentally change you, which is a terrifying thing to think about. The best thing you can do is respect someone’s identifier and focus on the actual issue at hand. Because if you focus too much on what I call myself, then I’ll assume you aren’t listening to what I actually say. And if you don’t listen to my story with respect, or anyone’s story for that matter, how do you expect the conversation to move forward?