My Name is Not “Disability”: Let’s Craft Some New Introductions!

Hello, readers,

So, my entire house is a plague house at the moment; we all have coughs, colds, low blood pressure, chills, you name it. We’re slowly mending, but this is the first day I’ve felt like writing again. And thanks to Disability Equality Maven Extraordinaire, Kathie Snow, I have a new topic. Well, it’s technically a new angle on an old topic, but it struck me as worth writing about.

Kathie’s latest Disability is Natural newsletter exhorts readers to “start with strengths” when talking about people with disabilities in their lives. She gives us the sobering thought that, when asked to name three wonderful things about a person with a disability, most people can’t do it. Of course, my visceral reaction was, “Sure they can.” But you see, that’s because I was blessed with a family who did tout my strengths even as they were being pushed to discuss my weaknesses and “problems.” Some people aren’t that lucky. Some people have families that, loving though they are, haven’t been given the opportunity to think about their loved one’s strengths, or, even worse, have been conditioned to think those strengths do not exist. Or even worse than THAT, some people circulating in and out of the lives of people with disabilities have been conditioned to think that a strength, for a person with a disability, is the same thing as doing something everybody else takes for granted.

What I mean by this is, of course people with disabilities want to be treated like everyone else, and they deserve that. Of course, we can celebrate when a child whom it was predicted would “never” do something like walk or talk, does it. (For instance, as you know, my parents were told with confidence that I wasn’t ever going to walk). But what if that becomes the only strength the person with a disability is aware of? As in: what would happen if someone asked, “What can you do well?” and, after thinking about it, you could only come up with, “Well…I can walk and talk.”

Kind of anti-climactic, huh? And yet, that’s the position doctors, therapists, teachers, and others put people with disabilities in all the time (whether they mean to or not, and irrelevant of the fact that they often truly love and care for that person). It kind of loops back into the disability hierarchy paradigm–I’d venture to say a lot of parents of children with disabilities sometimes fall prey to thoughts like, “Well, at least my kid can walk, talk, and eat better than your kid!” But walking, talking, eating, dressing, going to the bathroom, washing oneself…those are not strengths. Those are skills, and they are the skills that we spend so much time trying to teach people with disabilities, we forget about, or completely ignore, what they enjoy, are good at, or WOULD RATHER BE DOING.

Think about this with me, all right? If, at age ten, you had said to me, “Would you rather go to the bookstore or go to therapy?” I’d have picked the bookstore every time. If you had said, “Would you rather practice hitting a ball off a cone, or spend time with a creative writing teacher, writing a story?” what do you think I’d have picked? (By the way, that’s an opportunity I never got; I was forced to go to PE and never asked about it). Once, in junior high, as part of “exploratory,” I went to a class billed as a cooking class with my peers. I wanted to really learn to cook. I had wanted to learn for awhile. Guess what I got to do? Throw stuff in the garbage when the other girls were done using it.

I hear some of you: “What my child with a disability ‘wants’ is irrelevant. It’s more important that he goes to therapy and learns skills.” Okay–I hear you. And I have never said therapy is 100% bad. And yes, no child can always have what he or she wants. But let me give you some tough love: if you don’t know your loved one’s strengths, aren’t asking about them, and aren’t responding to them, you are stifling your loved one and painting them into the disability box. And let me be the first to say, that box has bars and locks.

So, what should we be doing instead? Well, aside from the obvious, which is searching for our loved one’s strengths and interests, we need to make them a priority. What does that look like? Well, here are a few ways to tell.

Let’s say you have a child with a severe disability. Maybe that child cannot (yet) play sports, or go to ballet class, or does not appear to have conventional “interests” like other kids. But say he or she loves the bathtub. That’s a clue–that kid loves water! Get him or her involved in some kind of natural (not disabled-only) water-based activity, like swimming, water aerobics, something. Even if he or she does nothing but splash, you’re serving the strength.

Or, say you have a child (or other loved one, actually) who doesn’t appear to respond to anything. But when you turn on a certain type of music, you get a smile, or a gesture, or a laugh, or some clue that they love music. So, you break out the CDs, the iPod, whatever you’ve got. You look up musical activities in your neighborhood. You serve the strength.

Also, don’t forget: give your loved one a chance to communicate to you what his or her strengths are. I was lucky–I was verbal. My parents didn’t have to struggle to figure out that my great love in life was and is books. But just because your loved one doesn’t say it with his or her mouth, it doesn’t mean strengths aren’t there.

Second: brag on those strengths, folks! Brag on how happy your loved one is while doing what they consider fun and EASY. Brag on what they can do that they are IN CONTROL of. (I capitalized these because for the person with a disability, so much can be either difficult or out of their control). Praise your loved one to others–and do it in front of them, too. Do it BEFORE you ever mention the disability, if you must mention the disability at all. Yes, even and especially at assessments, IEP meetings, therapy appointments, and all those places where the focus is “supposed to be” on problems and weaknesses. And if the therapist, IEP team, or whoever, isn’t listening? Keep talking. As in, “Maybe you didn’t hear me. I was saying that Juliet is excellent at singing.” And please, PLEASE, don’t turn a strength into a way to “fix” the disability, as in, “Flannery is so good at soccer. It really helps strengthen those leg muscles!”

And finally–I cannot stress this enough. You’ve GOT to teach your kid–or other loved one–to operate on a paradigm that says, “My strengths come first.” I’ll be up-front–this was and still is really hard for me. As a Christian, I was always taught that it’s not good to brag; that’s pride. And let’s face it, growing up, I was given the subliminal message that I didn’t have a whole lot to brag about. IEP teams, therapists, and others were focused only on “practicing” and “improving” and “goals” (which reminds me, why don’t we ever make goals related to strengths?) Even my parents, Lord bless them, had moments when they inadvertently put my disability first. It got to the point that I actually said, “I feel like you expect me to walk up to people, introduce myself, and immediately say ‘I have a disability.'” For fear that otherwise, people might think I could do something I really needed help with. Oh, the HORROR.

People with disabilities, do you ever feel that way? As if you should just wear a name tag that says, Hi, my name is…DISABILITY? Or like you should walk up to others and say, “Hi, my name is Jessie, and I have…”? Let me tell you, nobody should feel like that. Rather, the world should not operate in such a way that we’re made to feel like that.

Let’s throw out the old name tags. Let’s instead learn to say, “Hi, my name is…” “And you know what? I’m a caring, smart, capable person who’s also really good at…”

People with disabilities deserve some real bragging rights–and not just because they can walk and talk.


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