Going in Circles: Lemons and Sugar in the Disability World

Happy New Year, readers! I hope my letter from a couple of days ago has helped you, whether or not you have a disability, feel exhorted and yes, even inspired, to join me in this new paradigm of thinking about disability. So–new year, new post.

Kathie Snow and other disability rights advocates, such as Mary Johnson, might say society is “going backwards” in its thinking regarding people with disabilities, and to a point, I agree. The seclusion of “special education” (which I believe should not be used in any school the way it often is now, with separate rooms, schedules, activities, and so forth), the stringent requirements of “special” services like paratransit (yeah, we’ll take you where you want to go, but on our terms, which means that unlike riders without disabilities, you have to call in advance for a ride, can only ride one bus, and must travel for an hour while waiting for your stop on the route), and the pitying, partronizing language and attitudes of many people without disabilities, do signal to me that we are going in the wrong direction. And as much as I wish this weren’t true, some of us haven’t yet shaken off the use of labels like “retard” or “crip,” or the belief that institutions of all kinds are the best places for people with disabilities.

Yet, are we going backwards? I would propose not. Backwards indicates a steady decline with no indication of or attempt at improvement. I would propose we are, instead, going in circles when it comes to the disability-thinking paradigm. That is, we do or say things we think will improve the way people with disabilities are perceived or treated. But those things don’t work, or are misused, so we end up back at square one–no, worse than square one. We end up with yet another reason to separate people with disabilities from the mainstream, from “real” lives, if not physically, then emotionally, mentally, spiritually, and in our own heads.

For example (you knew it was coming) :), take the What if You Couldn’t program. This was a program the guidance counselor and compatriots put in place when I was in elementary school (second or third grade, I think). As far as I know, my elementary school was the only one doing this, so I suppose it could be considered “progressive.” But looking back with an adult perspective, I don’t see the What if You Couldn’t program as progressive at all.

As you probably guessed, this program–consisting of a “special” time each day when the counselor or another speaker would come to class to explain about various disabilities–was meant to show young students that disability was normal, and to show how people with disabilities truly lived, as well as the help they got. We discussed blindness, deafness, wheelchair use, and Down’s Syndrome (there may have been more, but those are the ones I remember). We wore low-vision and no-vision blindfolds to learn what people who were blind saw. We learned to finger-spell in American Sign Language (or at least, I sort of did; my fingers wouldn’t make some of the letters quite “right.”) A few of us sat in wheelchairs during class. And to learn about Down’s Syndrome, we were divided into groups and given felt puppets. In these groups of three, one person played the person with Down’s Syndrome. One played the kid making fun of him or her, and one played the “good” kid who stood up for the kid with Down’s (“Come on, Tom, let Amy play.”)

Did I see a few noses wrinkling? A few eye rolls? A few people muttering, “Puppets?” I hope so, because that’s my reaction now, too. Like so many other programs of its kind, I know WIYC was well-intentioned. But let’s look at its glaring flaws:

  1. The title is based around the word “Couldn’t.” This reinforces the myth that the most important thing about a person with a disability is what she can’t do, and that disability automatically means “can’t” should be considered first.
  2. The props and activities mentioned, such as the blindfolds and use of wheelchairs, also underline what the person cannot do, or does not do the same way someone without a disability does. They may also give young children the misconception that having the real disability is cool or fun (whereas, like the rest of us, a person with a disability has days when she thinks, “This is okay” and days when she thinks, “This stinks.”) For example, some days I think it’s pretty cool that I never have to worry about paying for gas, since I don’t drive (yet!) Or that nobody will ever say to me, “I can’t read your chicken scratch.” But other days? It’s not cool or fun. It stinks.
  3. The over-arching tone, especially where mental disabilities like Down’s are concerned, is one of pity, caution, and “let’s make friends with the disabled kid” or “don’t make fun.” The use of puppets to create artificial, moralistic situations drive this home. And these scripted situations have nothing to do with meeting a person with Down’s or another disability in real life. As an amazon.com reviewer said after reading a children’s book about disability, “Wouldn’t a better ‘first encounter’ be across the cafeteria table at school?”
  4. The program, in hammering into kids’ heads that disabilities are not strange, makes them seem stranger. The kid with a disability becomes someone to “help” or someone you ask to do something because “it’s the right thing”–not because that kid is your real friend.
  5. The program unintentionally uses the message that all people with a certain disability are the same. As in, all people who are blind can see nothing, or see only blurry colors. All people who are deaf don’t speak at all, or speak in voices that “sound like machines” (exact words of one guest speaker). All people with Down’s Syndrome act like very little children, screaming, making noises, and smearing their food around. (As a naive third-grader, this is what I wrote when I went home after Down’s Syndrome day and tried to write a well-intentioned story from Amy’s perspective (the name of the puppet character with Down’s).

But before you get too angry, let me remind you: be careful of what you’re angry with. The intentions of this program are good, and I think programs like this can be useful. But NOT in their current forms. If we keep these programs or “special” speeches or whatever they are, in their current forms, we will be going in circles. We will have raised awareness of disability–but only to reinforce the idea that disability is bad, strange, or wrong, and that people with disabilities are to be pitied, helped, and given “extra love.” And it will have begun with our youngest children.

And while we’re at it, let’s talk about love. This concept is arguably the one that disturbs me the most when it comes to society’s current thinking on disability. Of course, love is the greatest human emotion we have. We say “God is love,” and “God loves you”–and He does and is, by the way. Lonely people long for love. But we often act as if, by virtue of their disabilities, people with disabilities need more love than anyone else, because they can’t get it by their own merits, or just by being themselves, like “the rest of us.”

To explain: I’ve been looking up other disability-related blogs to see what’s out there. I recently stumbled on a blog by a woman close to my age who also has cerebral palsy. She wrote in a recent post about going to cafepress.com in search of disability humor T-shirts and other objects. She wrote about being offended by much of the merchandise, including a shirt with a picture of a teddy bear in a Christmas stocking, with “All I Want for Christmas is a Cure” written underneath in green (the color used for CP awareness).

To read more about The Cure or disability humor, you can read my previous posts. (And thanks to that blogger for directing me to cafepress.com). I want to focus now on what I noticed when I checked out the site for myself. I saw the offensive shirt mentioned myself, as well as other merchandise based on The Cure (even on a barbecue apron. How’s that for a double standard? You’re selling a barbecue apron to a person with CP, yet in real life, I’d lay odds you wouldn’t want them near your precious grill!) But I saw something else even more disturbing. Slogans on T-shirts, buttons, and so forth like:

Someone with ___ (autism, CP, whatever) makes me proud every day

I love my ___ with cerebral palsy (son, daughter, grandchild…)

My child has ___ (courage, kindness, etc)–below a disability name, crossed out

It’s special to receive a hug from someone with CP. I get one every day!

I wear green for my ___

My child has cerebral palsy (or whatever disability) and I love him/her

I wear green for my ___ because I love her/him

 

Now, don’t start harping on me about “what’s wrong with wearing a shirt or pin that proclaims you love your kid?” Absolutely nothing. It’s a bit like those bumper stickers–My child is an honor student at ___ (or, as I have also heard or seen, “My kid beat up your honor student.”) It may seem funny to some, even annoying if the other person’s in a bad mood. But no one disputes your right to express love or pride in your kid. In fact, if you didn’t, I’d wonder why, and feel sorry for said kid. What I have a problem with, is the over-arching theme of disability-related wear/merchandise. We would never, for example, see a T-shirt that says, “My child has a different skin color, and I love her” (as far as I know). Nor would we see one that said, “Someone who’s ___ (fill in religion) makes me proud every day.” And we sure as heck don’t see merchandise that says, “I wear (certain color) for my daughter,” as if race, religion, etc. needs to be cured.

Yet, when it comes to disability, we’re in there with both feet. It is as if we have to proclaim our love for the people, especially children, with disabilities in our lives because no one else will. As in, “I love my kid, so shut up about his disability! Nyah-nyah-nyah!” As if we’re seeing, “See, see? A child with a disability can still make his parents proud! See!” Or worst of all, “My kid’s more special than your kid!” It’s overprotective. It subtly assumes that if the love of others is not declared to them 24-7, on a T-shirt, in public, kids with disabilities won’t know it exists. It also assumes that people with disabilities need “more” love and pride because, “Oh, they’re so brave and pitiful–look how much effort it takes them to do what I can do easily.” But worst of all:

Constructs like these, however innocent and well-intentioned, drive home the stigma that disabilities are strange, different, or a symbol of being “broken.” It’s sweet, but it’s overly sweet–like sugar.

So what happens? We start at the sour end–the lemon end, if you will–of the circle. The one that insists people with disabilities must be segregated, kept in their special places, and treated differently. Then we get mad at that, and respond with “special” programs or slogans or the like, to “prove” to the rest of the world, in an almost desperate way, that disabilities can–really, really, honestly, pinky-swear, they can!–be normal. That kids with disabilities really are just like other kids. (But really, who’s “just like” anyone else? Aren’t we all individuals? Yeah, so there goes that tack). But the “special” programs or whatever weapon you’re using just reinforces the stigma, the myths, and the pity. You’ve sweetened it up, but it’s still lip-puckering sour underneath. And what happens then? People with disabilities are seen and treated as “special” or “other” all over again.

So, what do we need to do to stop this circular motion? Well, you probably noticed my usage of lemons and sugar to represent both ends of the circle. But sugared lemons don’t taste good (except in those packs of candied fruit, and even those are just empty calories). What we need is the last ingredient of real, quenching lemonade: water. Common sense. Inclusion. An attitude that says, “Yes, we can and should educate our kids and ourselves about disabilities, but not at the expense of those who have them.” Programs that focus on what people with disabilities can do, how they really feel and act, and the fact that they want the same things everyone else does. Sure, we can still talk about the guide dog, the hearing aid, ASL, the wheelchair, whatever. But not as an extension of the person. It gets a background role, not a starring one. And in that, perhaps those devices–and more importantly, the kids and adults who use them–can become truly cool in the eyes of those without disabilities.

So, who’s got some water?

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