You are entering the Independence Zone!

Recently on amazon.com, I stumbled across a book entitled Shut up about your Perfect Kid: A Survival Guide for Parents of Children with Disabilities, written by two sisters, both of whom are raising daughters with disabilities (one has bipolar disorder, the other, Asperger’s Syndrome). And I thought: what a good way to sum up what I wish I could tell the culture of caring. Shut up about your good intentions.

This thought process started because I emailed American Girl a respectful, but pointed email questioning the characterization and role of Josie in the Girl of the Year: McKenna books for 2012. If you haven’t seen the detailed post on that, feel free to read it and come back. I’ll wait.

Okay, I’m guessing you’re back. Anyway, I received an actual reply, which I did not expect, considering the thousands of emails this company gets daily. And for what it was, the reply was good. Basically, “Thank you, we are sorry you are dissatisfied…” with an explanation as to what Josie’s role in the books would be (showing McKenna what she can do, rather than what she can’t, and yes, helping McKenna overcome her own fears, although not through any smarmy means, though I do intend to check out the books myself to see if this is true). I later saw a blurb for the McKenna books on amazon.com that does use people-first language for Josie. But we’re not there yet, people. American Girl also used a character with a disability in its historical books about Julie Albright, who grows up in 1974. Julie’s friend Joy is deaf. She is featured in one book out of six, and when she is first introduced, her voice is described as “halting and too loud.”

Now, I understand–believe me, I more than understand–our world will never be perfect when it comes to disability, or anything else for that matter. Honestly, you’d think as someone who’s been in church since the cradle room, you’d think I’d understand the concept of “fallen world” by now. And I do. But does that make it right to say a Deaf person’s tone is “halting and too loud?” That’s a rather negative way to put it. Just like I wouldn’t like it if people described my walk as “uneven” or “shaky.” I mentioned this in conversation, and was told not to get upset, because no malicious intent was involved.

Okay. In this situation, I’ll buy that. Advocacy never gets anywhere if you get angry with things that may or may not matter in the long run. And sometimes, yes, the negative-sounding adjectives we have for disability do come into play for a variety of reasons–which should tell you we need to wake up our brains and find some more adjectives, but that’s another issue. But what about other situations? Situations where, because we “care,” we actually end up hurting someone we care about, however unintentionally?

One of the best movies I’ve seen, ironically enough, is the 1994 film Nell starring Jodie Foster. In terms of portraying disability, I actually don’t like some of the choices made. For example, the one time we see a child with autism, she’s in a hospital, throwing a tantrum and being told to calm down–you know, in that patient-impatient voice? And Nell herself is considered “disabled”–in fact, branded “mentally retarded” not half an hour into the film–because she has picked up the speech distortions of her mother, who had a severe stroke, and also uses twin speech, a relic from her childhood with her deceased twin, May. Put a Robbinsville, NC Southern accent with that, and yes, Nell can be tough to understand at first. But she’s certainly not disabled or retarded.

I like this movie, not because of how it portrays disability, but how it portrays Nell herself, and her astute doctor, Jerry Lovell (Liam Neeson). Nell may look and speak as though she doesn’t have any real “life skills” (and as I’ve said before, what are those, anyway), but she does. She sees and understands people better than the “normal” folks around her. She seems happy with her life in a secluded mountain cabin, although to Lovell and psychologist Paula Olsen, this seems impossible. And she makes the “experts” in the film, such as the rather snobbish Dr. Al Paley, look rather like idiots–by being herself. A perfectly normal woman with her own life and experiences.

As for Dr. Lovell, I think he gets it. He doesn’t see disability in his interactions with Nell. He sees a woman who needs certain care, but not the kind the “experts” can provide–as in, psychiatric units and therapies that may not benefit her. In fact, he has a great quote about Nell: “Be sure she needs care, before she gets cared to death.”

We could learn a lot from Dr. Lovell.

I mean, think about it. Have you ever seen–or been–a parent or guardian who tries to shield a child with a disability from a physical or mental activity (depending on the disability itself) because you’re afraid the child will be teased? Have you ever wondered if a person with a disability really should try something new or hard, because if it doesn’t work out, he or she might face disappointment? Have you, like me, been the person with a disability, and watched with a mixture of humor and annoyance when someone over-compensated for you? As in, the person who constantly asks if you need to rest when you’ve been walking for awhile? Let me assure you–I know my walk is different. But I enjoy using it. And it gets rather annoying when, on a shopping trip or hike or whatever, people ask if I’m okay every ten minutes. If I’m not, I will tell you.

The argument against this stems from the culture of caring. That is, because most people are well-intentioned toward people with disabilities–they’re kowtowing to that time-honored tradition of “helping the handicapped,” as Mary Johnson put it–they get confused or even offended when we see their actions or words as insulting or unnecessary. They say things like, “Calm down” or “Even if they’re going about it wrong, that person is trying to be nice.” Or, in a classic straw man move, they get mad and snap, “Would you rather you never got help at all?”

No. No, no, NO.

I understand that you care, and I’m glad you do–it’s better than being called a crip and ordered to stay home where I can’t “depress or nauseate” anybody (this was once said about a boy with a physical disability who was turned away from public school in 1919). But you guys, who don’t have disabilities, need to understand that your good intentions may end up hurting someone. They may, among other fallout:

  1. Make people with disabilities think they really can’t, when they can–and sometimes can, better than you
  2. Make us feel that we should accept negative adjectives or prognoses because “That’s just what we call it”
  3. Frighten us–make us feel like we should be scared of the world, because maybe it doesn’t care–and thus awkward in the “real world”
  4. And it could just plain make us mad

So take a cue from Dr. Lovell. Next time you’re 100% sure something aimed at a person with disabilities is well-intentioned, do a double check.

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