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I recently had a conversation with someone on Twitter about People First Language.

Let me back up a second. If you don’t know (and if you’re reading a site specifically about disability advocacy, you’re probably familiar with the concept, so I’ll keep it short), People First Language is a philosophy by which, when writing or discussing issues of disability, the person literally comes first. I am not a curmudgeon, for example, but rather I am a person with curmudgeonly tendencies. (Which is true enough.) Adherents to People First Language believe that identifying a person by their diagnosis or placing that person at the mercy of their condition (“confined to a wheelchair” instead of “uses a wheelchair”, for example) can result in fear or pity and will become an impediment to real and meaningful inclusion. People First Language confers dignity on a person that other language choices do not by minimizing the impact of the disability on the person’s image and, perhaps more important, their self-image. Or so the thinking goes.

Anyway, back to my conversation the other day. The person who tweeted about People First Language expressed surprise and disappointment that there are still people who do not use it, fueled by the belief that People First now represents a universal standard that all writers and advocates do (or at least should) adhere to. This is in line with the goals of People First, incidentally. Which is a problem for me.

I do not care for People First Language. I especially don’t agree that it should be a universal standard for professionals. I do not like it, Sam I Am.

I went back to refer to a piece I’d written a while back, only to discover that it was four years old. A lot has changed in that time, including the general reaction in the disability community to People First Language, so I thought it might be time to talk about it again.

The primary thing that has changed in that time, I think, is a growing discomfort among disabled self-advocates. I’m not actually qualified to go too deeply into this point, and I won’t insult anyone from my admitted place of privilege by trying to speak too much to this perspective. Suffice it to say that there are many who feel that their disabilities are a vital part of what makes them who they are, and minimizing those differences shames them, encouraging the world to consider them as less somehow. I can’t speak directly to that perspective, but it strikes me as extremely sound logic.

When I went back and revisited the People First site, two things jumped out at me. The first is obvious: Kathie Snow, the person who has developed the concept and has been the driving force behind advocating for its acceptance as a universal standard, does not herself appear to have a disability. The second thing that caught my eye is that People First isn’t just a concept to her. It’s a business, and not a small one, either. To me, that feels… I don’t know. Awkward, perhaps.

Regardless, I can see the appeal of People First. And I want to make something clear. I have absolutely no personal issue with anyone for whom People First Language feels appropriate and respectful. I am a firm believer that words matter, and that everyone has the right, and even the duty, to find the means of expression that work best for themselves and for the people whom they love and support. I would never try to tell someone that what works for them is incorrect for anyone else. (In that respect, incidentally, I think I’m extending a courtesy that proponents of People First Language, in their quest for universal acceptance and implementation, most decidedly do NOT extend in return.)

So I get it. As I said four years ago, I would love for my daughter Schuyler to live in a world without judgment and pain, one in which her differences were celebrated and where no one caused her to feel like there was something wrong with her.

But there’s a harsh truth at work. There is something wrong with her. There are pieces of her brain that don’t quite successfully process the world around her in all its complexities, parts that wreck her speech and occasionally give her seizures, which can prove debilitating or even fatal to other kids whose brains are similarly but more significantly affected. This brain of hers, whether or not it kills her one day or simply makes the world a hard place for her for the rest of her days, well, this brain is broken. That’s rough, certainly for the people who love her to process, but more importantly, it’s no picnic for her.

Schuyler knows this. She doesn’t use the term “broken”, but she will tell you that her brain has a tiny monster living in it, and that it keeps her from talking. And when pushed, she’ll admit that this pisses her off. She stays unblinkingly positive about it most of the time, but her anger and her frustration at her little monster is heartbreaking to those of us who care for her. It might just be the most challenging part of being her father, knowing that she’s aware of the problem and would do anything to solve it.

But here’s the thing. It’s not a problem than can be fixed. Her monster can be negotiated with, outsmarted, minimized, even occasionally tamed, but it’s never going away. It’s not going to be healed by science or clean living or Jesus or vitamins.

Most of all, it’s not going to be eradicated by gentler language. Schuyler doesn’t need the world to speak more nicely about her monster. She needs us to speak more honestly about it.

And that’s hard. I get that. It’s hard because we love her, and talking openly about what’s wrong with her feels like we’re ignoring what’s right about her. And there is a very great deal that is right about Schuyler. She’s the best person I know, hands down. I get why it’s tempting to use language that takes the power away from her disability. But it doesn’t. People First Language doesn’t blunt the monster’s fangs.

Worst of all, at least in my eyes, People First Language seems to want adherents to take ownership over their disabilities. Schuyler isn’t epileptic, People First tells her. She is a person who has epilepsy. She owns it. And that’s great, I suppose, particularly for adults who can process that idea.

But is that right for a child? If we ask Schuyler to own her disability, will she seek to take responsibility for it as well? Isn’t that how young minds work? If your parents divorced when you were a child, didn’t you ever think it happened because of you? Children are natural narcissists, and the world revolves around them. I don’t like the idea of Schuyler as the victim of Fate or bad luck or a genetic misfire, but it would kill me if she somehow believed that she’d brought her disability on herself, as if she deserved it.

Ultimately, one day Schuyler’s disability will be hers and hers alone to face. As a parent, that’s hard to admit. But there it is.

I’ve said it before, but I have always maintained that the only two things I can ever guarantee to provide for Schuyler are love and the truth. People First Language feels like love, but I don’t think it actually is. And I know it’s not the truth. It’s a version of the truth, perhaps, but one that exists, in my opinion, mostly to make a hard situation feel easier. And honestly, I’m not sure it makes it feel much easier for Schuyler. It probably does so for the rest of us, the ones who love her, but we’re not really the point.

If People First Language is putting us first rather than Schuyler, then I truly believe it’s getting it wrong. I’m sorry, but it is.


Be sure to check out Champ’s recent adventure to visit Ireland and a special little girl and family there! Thanks Rianna for the great care you gave him! We’re working with Build-A-Bear Workshop to visit with families around the world who are touched by special needs. Join us

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