Note: This post was originally published March 17, 2017.
Note 2: An expanded version of this post can be found on The Mighty.
There’s been an ongoing discussion for some time now over how to describe people who have epilepsy, autism, or any number of pathological or sometimes disabling conditions. There are two sides, or schools, in the debate.
The “Person-First Language” school says that a person is more than just a disability. Focusing on a person’s disability, they rightly note, can be dehumanizing—it can encourage the speaker to regard the person as simply an instance of their disability. Person-first language would call me “a person with epilepsy”. Education groups, government organizations, and other groups focusing on the needs of such people really push this view.
The “Identity-First Language” school, on the other hand, says that a disability, or a difference of any kind, should not be looked down on. In fact, lots of people don’t regard their condition as a disability, but just as part of who they are. Putting this language first, they say, recognizes that their condition is just part of who they are, and should be accepted that way. These people would probably call me “an epileptic”. Many people on the receiving end of disabling or differentiating conditions, who have in some way come to terms with them, take this approach.
Until yesterday, I hadn’t come down hard with a decision on how I thought of myself. But—well, you can probably guess from the title. I was listening to a podcast yesterday that reminded me that, as a Catholic, I know that God created me an embodied person for a reason. Body, mind, and soul, flesh and spirit, are equally gifts to me.
Maybe “God” doesn’t work here for you. That’s OK. It’s still true—everything about yourself, everything that’s you, comes from the universe, from something beyond yourself. That’s where I’m coming from. Everything about my body and everything about my mind is a gift. Some of them, maybe, are gifts I’d rather not have.
Being left-handed is a gift. So is having brown hair. So is being smart enough to get through a first-rate university. So is having reasonably good sight. And so is epilepsy.
As you can guess from some of my other posts, it’s not always easy accepting epilepsy as a gift. I typically think it’s a pretty awful gift that I don’t really get the point of. But if I accept my body as it is, if I really believe that I am worthy of acceptance for who I am, then my epilepsy is a part of me just as much as my left-handedness or my brown hair or Irish ancestry. And I wouldn’t have a problem being called a lefty, or a genius, or a Catholic, or a procrastinator. All these things—some chosen, some not—make up parts of who I am. None of them express the whole of my identity; I shouldn’t expect them to. I know that when someone calls me a genius, they’re not necessarily reducing me to my mental capacities. When they call me a lefty, they’re not reducing me to my dominant-hand status. They’re calling out one particular aspect of my identity that they think is important. If I am truly comfortable with and accepting of everything about who I am, there’s no problem with that. Deciding whether it is important is a responsibility shared between me and the speaker. But the speech isn’t wrong in itself.
Now: Person-first language evolved for a reason. After nearly thirty years with it, I accept my epilepsy as “just a part of me”. It wasn’t always that easy for me, and it might not be that easy for someone with another condition. If I couldn’t see, or hear, or walk, it might be far harder for me to accept that. And people might be much more cruel, or just thoughtless, in how they treated me. It’s easy to treat someone different from you as someone less a person than you. The point of person-first language is to remind the speaker that I am a person. I already know that. Or I should. But some people talking to me might not. That’s why people invented person-first language. I have no problem with that. And if someone speaks of me as “a person with epilepsy”, I’ll recognize the intent behind the description, internally thank them, and move on. But I wouldn’t say I’m “a person of intelligence”. I’m an intelligent person. I’m not “a person with left-hand dominance”. I’m a left-hander.
And I’m not “a person with epilepsy”. I’m an epileptic. And proud of my gift.