I took a break from the blogging world for a variety of reasons, one being Memorial Day. And, to those veterans who are serving now, have served, or gave their lives serving: THANK YOU. My handle is independencechick–well, you guys and gals are the reason anybody in America knows what “independence” means. And to those of you who sustained a disability of any kind from service (including mental, emotional, and psychological), THANK YOU–and know you are rooted for every day. Your life is not ruined because of that disability. Your life, in fact, has a new dimension, and you have a new story to tell. (See my post on survivors in the March archives).
That being said, I had other reasons for taking a break, not the least of which was thinking about what it meant to make disability “natural” and accepted in mainstream culture. I had some help for this, some of it from a couple of readers. For example, a lovely woman named Sharon wrote in to respond to my recent post on obesity. She mentioned a facet of obesity I foolishly forgot: Prader-Willi Syndrome, which actually is a legitimate, medical, disabling condition. For those of you who don’t know, PWS is a rare disorder/disability in which the hypothalamus malfunctions. For those of us who aren’t doctors–or who don’t watch Mystery Diagnosis regularly–that basically means your brain cannot recognize when your body is full. As a result, someone with PWS is constantly hungry. And I’m not talking hungry like, “Ooh, it’s 2:30 and I want a snack.” I’m not even talking about, “I missed a meal/have been fasting for a week.” This has been described as “a starving hunger” by the mother of Connor Heybach, a young man with PWS. As a result, these children often become quite overweight, and can eat themselves to death.
Sharon is raising a grandchild with PWS, and though she was cordial in her comment, she seemed offended–rightly so–by the post, because I assumed that, in the absence of very narrow parameters, obesity was always the person’s fault. So, to Sharon: (1) I apologize, again. Consider this public regret for foolishly forgetting about a rare disorder, when ironically, I should know better than most how living with one feels (I was told all my life how rare my manifestation of CP was). (2) Thank you for giving me the opportunity to share new knowledge with others. (3) Thank you for reminding me of something–the world doesn’t treat any disability as natural or acceptable, in many cases. And obesity is no exception. In fact, the world–sadly, myself included at times–acts as if obesity is the one human condition it is still acceptable to look at with punitive attitudes and disgust. Never mind preexisting medical issues, genes, and other factors nobody can do anything about.
And that brings me around to today’s topic. For months, I have been telling readers–all right, all right, preaching, if you must, though that wasn’t my intent–that disability is natural. I admit, I’ve done it partially for selfish reasons. I’ve got a disability, and I know the pain of “normal” people’s faulty perceptions, beginning with the notion that I am not “normal.” I wanted to express my own thoughts and reactions, and to show that I was as natural, normal, and worth regard as anyone. But I’ve also done this for the sake of others with all kinds of disabilities, especially those whose disabilities caused them more pain and trials than mine caused me.
But really, can society today be expected to “naturalize” disability? And if so, how, when, and by whom will that be done?
I think we’ve already come a long way toward that goal. After all, back in the Middle Ages, disabilities, particularly ones like epilepsy, were considered curses, divine punishment, or evidence of demon possession. I love the Medieval period–one of my best high school memories involves dressing up and participating in Madrigal Dinners. But that line of thinking, I can totally do without. (In fact, I probably would’ve protested it and been burned as a heretic). And as you already know, we’ve come an even longer way in the centuries since, because legitimate disability services exist, institutionalization numbers are way down, and disability rights has begun to be seen as a civil rights issue. But–a la an impatient little kid on a car trip–I gotta ask, “Are we there yet???!!!” The answer’s no. And I am utterly, thoroughly ashamed to admit, I got the answer from my own mirror.
I was at church at the time (hence the post title), for a midweek service and meal. I rarely make it to midweek, so even though I knew most of the people there, they weren’t people I knew well. At my church, the meal takes place a good hour before the service, so that those who want to eat can, but those who only make it to the service part don’t have to worry they’re missing anything. As a result, a majority of my fellow diners were just acquaintances. And I was eating, I noticed something a large number of those acquaintances had in common. At least four of them (remember, this wasn’t a big crowd) were men from the local group home for men with developmental and mental disabilities. All their disabilities are visible, and all have significant mental/cognitive impairments.
Now, no. I did not switch my table. I did not think, “Ew!” or, “Poor things.” But keep a few things in mind. (1) I have a disability, too. (2) That disability precludes my driving, so I was at church with my mom (who played taxi service that night). My sainted mother is also a little overprotective. For instance, she kept asking, did I need something cut up (although I’m not sure how anybody does that with plastic utensils), if the food was okay, if I needed anything, and so forth. And the thought occurred to me: I’m 26, but I’m here with a parent. Everybody here knows who I am and who Mom is, but they don’t know me personally. If they heard or saw the wrong thing, they might think I’m exactly like the group home guys. This is particularly true because, when walking and standing, I “look” disabled. And I can tell you from experience, nothing hurts me more than someone assuming, or even saying, I am not smart, or could have autism, mental disabilities, or one of their cousins. But that does not excuse what I was thinking.
If you’re saying to yourself, “What do you mean?” or, “That’s an okay reaction,” maybe you didn’t hear me. Or maybe, as often happens, I need to explain further. See, when I had that reaction, the next thing I thought was, Why would it be so bad to be put in the same boat with those guys? It’s not like they’re evil, or contagious, or obnoxious. Now, of course, I wouldn’t want someone to come up to me and start talking and acting as if my IQ were below average. But in reality, are their disabilities any “worse” than mine? And why couldn’t I look at these men and have the gut reaction of, “Oh, I know those men. They have disabilities. And you know what? That’s natural.” Right–because I was too busy worrying about how I looked in comparison to them–and because unfortunately, I’m still trying to break out of conditioning that says, “Disability is unnatural. It is unfortunate and to be pitied, avoided, prayed against.”
So, all that to say: huge wake-up call. If we, as people with disabilities, can’t see our conditions (and by “condition,” I mean nothing except “human condition”) as natural, how are we going to treat others in our unique community? Are we going to place ourselves in a hierarchy, judging each other based on who’s closest to “normal?” And how are we going to teach ourselves and others to react well to the negative–or positive, yet misguided–prejudices or faulty thinking of people without disabilities?
How did we get to this point, anyway? Well, yes, prejudice and pain. There are still people out there who believe disability has no place in the world, and however they’ve manifested that, it’s touched–and burned–a lot of us. One such manifestation, for example, is the one that forgets, not all people with disabilities are the same. As in, physical disability will always equal mental disability. Mental disability will always equal inability to do anything of significance. Psychological disability will always equal inability to function. (Whew, sounds like a bunch of math formulas. I knew there was a reason I always thought math was evil). “All people with disabilities are the same,” for example, is the core statement behind my reaction to the men at church.
But as much as we’d like to blame it all on prejudice, I don’t think we can–and when I say “we,” I mean, people with disabilities. Remember how I recently said we shouldn’t be victims? Yeah, well, blaming all our problems on prejudice can be a form of victimization. Sometimes, we’ve got to take responsibility for the fact that we’ve internalized negative perceptions, letting them control us, our lives, and our self-images. Maybe we’ve gotten too comfortable with the shame. Or maybe we’ve learned to say, “The disability will always be in the way. Every time I try to do something, I get a “no” or “you can’t,” and that’s sure as heck not natural.”
You’re right–it’s not. And scolding or punishing ourselves for internalizing, staying stuck in shame others put on us, or doing anything esle to perpetuate the “unnatural” myth? That’s not getting us anywhere.
“But Chick,” you might be saying, “you don’t get this. I have severe disabilities, not some mild thing like you’ve got. I literally have no control over my life. I need help with the basics. That’s not natural.”
Ah–it isn’t, huh?
I would challenge that perception. I would propose that if it doesn’t feel “natural,” it’s because somebody told you that. Or maybe you didn’t hear those words, but you did see you were in the minority, and that made you feel “unnatural.” Now, to get out of that line of thinking, you do need support–support of people who truly care about what you want out of life and who want to help without being control freaks. You will need spiritual support of your choosing, and you will need physical, mental, and emotional ways to break out of your comfort zone. I am not a proponent of, “Say this positive mantra, and voila, you will feel like your disability is natural.” As I was recently reminded, feelings have very little to do with reality.
But yes, you’re right. Part of the responsibility for making disability a naturalized part of our world lies with those who don’t have disabilities. Yes, I am talking about turning off the pity, the punitive attitudes, the smarminess, and all that junk. But I’m also asking you guys to do what I’m still learning how to do. When it comes to disability, make sure you don’t just talk a good game. Educate yourselves. Get to know real people with disabilities, and learn from them. And soon, you’ll not only start seeing their disabilities as natural, but maybe you won’t see them at all.
By the way–the other night at church? There’s a good ending to that story. By coincidence (or perhaps God choosing to remain anonymous) I ended up sitting with Jonathan, one of the men from the group home. True, some of his mannerisms threw me off for a minute–such as laughing loudly at least 30-60 seconds after the pastor’s jokes. But really, so what? And after awhile, I got used to it. As in, “So he’s got a loud laugh. Well, forget it. I probably sing off-key, and I’m always so cold at church somebody usually offers me a jacket. Is that ‘natural?'”
Sure is–and so was Jonathan. And so is everyone else. We just need to make that happen for real.