You are entering the Independence Zone!

Hello, readers,

As you remember, I’m writing this blog in part because I have a disability–cerebral palsy. But as you also know, my case of CP is quite mild. I have said to people that it may be, in my estimation at least, the mildest case on record. All of my senses are in good working order, with the exception of some visual-perceptual problems exacerbated by nearsightedness. I can talk just fine; in fact, my dad used to joke that I should’ve been a lawyer (and don’t think I didn’t consider it, especially after reading James Scott Bell’s wonderful Kit Shannon series and seeing Legally Blonde). I do have problems with my hands in that I cannot handwrite, nor can I manage tiny fine-motor tasks like tying shoes (thank God for loafers). But my feeding skills, hygiene, and dressing skills are just fine, though the third did take practice as a kid thanks to those pesky shirts that looked the same on both sides and a few other pitfalls. From age two to age fourteen, I did attend physical therapy, and spent approximately nine years in leg braces, knee and ankle-length. But unlike some others who have experiences with braces, I was also in and out of them for nine years, at the whim of therapists and clinic specialists. I have not worn braces in over ten years, don’t miss them, and have become quite fond of walking around, thank you.

Yes, all this still adds up to CP, which is in the realm of disability. But considering the scope of their influence on my life, the “symptoms” themselves were milder than some, especially when counteracted with giftedness (see my posts on twice-exceptionality). But lest you think this is a “brag on me” post, let me assure you it’s not. I wrote this post to show the exact opposite: that a mild disability, just like a moderate or severe one, can have its pitfalls and blessings. And just because the disability is mild does not mean the pitfalls don’t exist. Yet, this is how the world of people without disabilities sometimes behaves–as if a mild disability exempts you from the right to encounter obstacles. The ableist attitude is unfair to all people with disabilities, for different reasons. To the person with a severe disability, the ableist will say, “You cannot function in my world, so stay out of it.” To those with the moderate disability, the ableist will say, “I’ll accommodate you, but only up to this point, and you better not act more disabled than you have a right to be (in my mind).” And to those with mild disabilities? Well, ableists might actually appear to welcome these people. They might say things like, “Welcome! Come in!” But as soon as they see the disability, they back off, protesting, “I wasn’t prepared for that! What, you expect me to modify things for you? That’s not fair!” It is as if, by virtue of having a mild disability that may not need as much modification, or have obvious “cues,” these particular people are immediately branded as sneaky, liars, or putting up a facade of a “normal” person when “They should know better!”

Now, please understand that when I say “ableist,” I am leaving out certain people. I’m not talking about the true friend who says things like “I don’t think of you as disabled.” Personally, I’ve never known just what to do with that statement because I wonder if that means they’re ignoring what most people can see right away. But at heart, that’s a compliment, and at least my friends are thinking of me in terms of strengths, not weaknesses. And I’m not talking about the person who’s never met someone with a disability before, or at least spent major chunks of time with people who have disabilities, and isn’t sure what to do, but wants to be kind and treat those people as equals. When I say “ableist,” I am talking about a person who, either by general ignorance (which can be changed), by sheer idiocy (acting as if all people with disabilities are “poor, sweet babies,”) or nothing but a big ol’ mean streak, see people with disabilities as inherently unequal and unable to function in society. I’m talking most specifically about those with the mean streaks–which can come out as hostility, condescension, or a sugarcoated version of “let’s help the handicapped.” These people get mad when people with mild disabilities “infiltrate” their worlds because they feel duped–“We thought you were normal!” Funny, I thought I was, too. Oh, whoops, I forgot about the wings sprouting back there. And I knew I should get that rainbow-flecked mole looked at. Thanks.

As I hope to show in this and future posts, mild disabilities can and do have their own sets of blessings and curses–upsides and downsides–just as severe and moderate ones do (yes, severe disabilities can have upsides. Just think: if your means of communication is a board, assistive technology machine, or any means other than your mouth, you don’t necessarily have to respond to that dreadful bore at your corporate party, right)? These upsides and downsides often come in combinations. And the biggest one for people with mild disabilities, I believe, is an all-or-nothing mentality. It’s based entirely on assumptions. That is, a person who doesn’t have a disability looks at someone with a mild one, like me, and assumes one of two things. He or she either assumes I can do everything, or that I can do nothing.

Believe me, this happens a lot. And I’ve spent time wrestling over which is worse, as well as which is easier to correct. But let’s look at them one at a time, or my thoughts are gonna run amok in this blog.

Everything:

The upside: You’re seen as capable, strong, and talented–the way EVERY person with a disability, degree of said disability notwithstanding, deserves to be seen. You’re somewhat less likely to run into the “oh, you poor sweet baby” atttitude (and I’ll get to the “somewhat” part in a minute). What you CAN do may get more attention than what you CAN’T (we’ll come back to the “may,” too).

The downside: As explained, some people may get upset when they find out there are things you cannot do or need help doing. From personal experience, I can tell you this is true the smaller the thing is. As in, first- and second-grade teachers who were, I believe constantly mystified at the question, “What do we do with a kid who can talk like a fourth-grader but can’t tie her shoes?” Failing actual anger, you may find people suddenly get flustered and nervous around you, as in, “Ohmigosh, what if I do or say something wrong and she accuses me of discrimination?” (Relax–most of us don’t do that). You’re somewhat more likely to have trouble with ableists on all fronts. The “sweet baby” ones may have the nervous and flustered reaction, and then fuss over you like a mama gone berserk. The ones who don’t know how to react to mild disabilities may pummel you with thousands of questions (which is actually okay as long as said questions aren’t rude or nasty, and as long as you’re in the mood to answer them). The ones with the mean streaks? Well, as we know, they’re pretty much a danger to anyone with a disability, degree notwithstanding. (Actually, anybody with a fully operational, 24-7 mean streak is a danger to anything on earth that breathes their air). And, once people find out you’re “out of the disability closet,” so to speak, they may in fact focus more on what you CAN’T do, totally forgetting about the cool things you’ve proven you CAN do.

Can you correct the assumption? Yes. Humor works wonders here–one of my favorite lines is, “God did not give me___” (dexterious fingers, fully operational legs, whatever). I mean, God knows everything, so having to explain my disability should be a cinch. I also like the line, “Don’t worry; if I need help, I’ll ask you. If I don’t ask you, I’m fine.” Humor, again, works well on the nervous ones; you could, depending on how it appears the joke will be taken, crack one about the last poor sap you sued. As for the ones with the mean streaks? Ignoring them works fine, but if you feel like popping off a zinger, try something that emphasizes ability. As in, “Hey, I have a 4.0 graduate GPA–so, you can walk down stairs without the railing. Isn’t that cute.”

Nothing:

The upside: It’s actually hard to think of one, but I guess you could say, thinking up all the zingers you’d love to fire at the person. And, as Ann Rinaldi, one of my favorite historical fiction authors for adolescents, said in one of her books, silence means you learn things. In other words, people who believe you’re dumb and incapable, whether they mean to believe it or not, are giving you a peek at their own fears and insecurities. Observing them gives you an extra shot of interpersonal intelligence. Plus, not gonna lie–sometimes it’s kinda fun to play dumb and then shock everyone’s socks off with what you can do, and do know. (A cautionary note: It’s only fun if you’re doing it on purpose. If you have a disability, people are assuming you can do nothing, and you have not been provided with a way to communicate otherwise, then that needs to be addressed by you and someone you can trust, and it needs to happen NOW).

The downside: Besides the obvious–that the belief you can do nothing leads to, well, being expected to do nothing–there are a couple of other pitfalls. This mentality feeds into what Kathie Snow called the “disability hierarchy,” because people end up thinking your disability is “worse” than it is. But that, of course, invites the question of what gives us the right to tag one disability “worse” or a bigger hassle than others. Also, at times, people expected to do nothing can fall into patterns of learned helplessness, hopelessness (expectations for me are so low, what’s the point), or enjoyment of doing nothing that they’re reluctant or scared to break out of.

Can you correct the assumption: Yes, although this may be a little harder. Humor may not work as well here because the assumption that you can do nothing tends to result in more anger than anything, at least in my experience. And, because “she can do nothing” may translate in the minds of ableist to “she can’t comply or behave because she can’t do anything else,” zingers and comebacks may just feed their fire (this goes for the other scenario too, though in my experience, it happens less often). In this case, my advice is, you’re better off with an assertive, “Actually, I CAN…” (fill in). Ignoring works too, as does letting your actions show that you can do things. And as with the other scenario, read the situation as best you can. Despite my caution about zingers, sometimes one works, as long as it’s not aimed at the person (because then the person could pull out the “noncompliance’ card). Try something like, “Oh, thanks for writing the date for me, but you don’t have to circle the items. I might need extra time to think through my options.” (Thus underlining the fact that yes, people with disabilities do recognize when they have options, and yes, can think).

I hope you’ve enjoyed our first walk on the mild side, and will join us for future posts. Until then, remember: having a mild disability is kind of like being mild salsa. You may look sweet and harmless, but you can still bring the world some zip!

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Comments on: "A Walk on the Mild Side: The Blessings and Curses of Having a Mild Disability, Part 1" (1)

  1. Dear readers,

    In retrospect, one disclaimer on the “zingers”:

    If you are a child or teen with a disability who has read this post, be aware that zingers can be powerful, but should be used very carefully. They can result in comebacks from bullies, both minors and adults. Make sure you have the backup you need when people assume you can either do everything or nothing–a parent, a trusted teacher, a clergy member, whoever. These people can help you figure out when and how to use verbal comebacks, and back you up (explain you were defending yourself) if someone unfairly labels your self-defense as bad behavior. Good luck out there. 🙂

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