Disability Shame Speaks:|
'I am alive and doing very well'
A dramatic monologue
By Laura Minges
Hello. My name is Disability Shame.
I'm incredibly difficult to catch in the act, but I make people tired, confused and depressed. I feed on stereotypes and negative self-judgments.
Today I have been hard at work convincing Laura Minges that she really isn't a Total Woman. A Total Woman, you see, doesn't need to have help getting dressed, making food, picking things up off the floor, bathing and the myriad of other things she needs. That's for babies and young children. I specialize in reminding her of this, and of making her feel as if she is a burden when she is, in fact, a bright and capable woman.
I don't let up on her, though. It's not in my nature. My job is to make her feel that she is one-dimensional, simply a needy body. To eclipse her gifts and make her feel that all she does is occupy space and time that other people need to live their lives fully.
Mainstream ideas about disability make this superbly easy. All it takes is a few people who marvel at her mother's and attendants' ability to care for her body, and the message is clear: It's an overwhelming job and you are little more than an endless stream of needs.
Of course you have a right to live, but you are contributing much less than what is needed to come out ahead on the resources poured into you.
Get it together.
Oh, yes, of course the playing field is level. Discrimination and stereotypes? All in your head.
But then again, people know you can't contribute. People humor your goal of being a published author, preschool teacher, and college professor, though. But so few clients of social service agencies dream big, you see, and no one has the heart to say those dreams are a waste of time. So they smile nervously and knowingly. You have maintained a high GPA for years? Impressive.
Who's been helping you? Disabled people just don't do that well. Yes, they tell you a degree is worthwhile, but really, we know there has to be a catch. What is it?
"You cannot be innately capable. You're disabled."
A few of these messages and she feels as if she is swimming against a torrent of ignorance and barriers. The fact that she is utterly disheartens her. She loses her grip on rightful indignation and feels outnumbered. Then I remind her of her needs, and she is mine.
It's a sweet, sweet life. It has been this way for a very long time. And lucky for me, she hardly ever talks about it. So I think the arrangement will be in effect for a very long time. When I feel her start to slip from my grasp, all I have to do is surround her with the frustration and exhaustion of care providers and friends. That is laughably easy.
And I have a back-up plan should that one fail. All I have to do is make her feel bad about how stiff her muscles are, how little she exercises and how her father was absolutely right; her legs are useless and she doesn't try and she's a bitch. Easy as pie. I just make her hate her body for what she can't or doesn't do. It covers all my bases. An airtight defense that puts her on edge. Works every single time.
Yes, she knows I'm a complete liar who distorts reality. She has recently begun to acknowledge my presence to anyone who truly wants to listen. I'm not exactly thrilled about that, but I'm not shaking in my oily boots, either. She always comes back to me.
A few years ago, she began reading about Disability Pride. At first, it was in short, almost shameful bursts. She thought being proud meant being bitter. Now, though, she reads about Pride for hours. He's been making quite an impact lately. But he isn't authentic. She used to find it hard to think or write about him, but now I have to work much harder at affecting her. I haven't lost my touch, though. I don't exactly keep them apart, but I do remind her of how much he confuses her and how others do not understand him. They call him "Fear of change" and "Crazy P" and "Misguided Menace."
I don't blame them. I mean, Pride goes around espousing abstract virtues like self-acceptance and self-definition.
It would be a nice gig if it were effective, or even true. But it really isn't. Everyone knows that.
It's funny, really. The last time I saw Pride, he looked like an ebullient cowboy whipping a lasso around.
He exuded so much confidence I just had to howl. Who can take that seriously?
Oh, sure. People in the crowd were buoyant and vigorous, shouting chants, holding hands, singing songs. Standing a little taller on disabled legs, sitting a little straighter in their chairs, twirling on asphalt. Signing with enthusiasm. Embracing their invisible disabilities.
All very touching.
But guess who is waiting for them when they get home and need help getting into bed, or when they go to work in the morning and feel they must hide their differences?
I am. I get around.
You see, Pride may be developing a loyal following, but he is unquestionably the new kid on the block. He's the misunderstood progeny of the disability rights movement of the 1960s and '70s, when people tried to turn weakness to strength.
People still try to do this, and it generally fails because they ignore their bodies in the process.
I've seen many people use stickers that declare things like, "Your attitude is my real disability!" and I grin from the first light of dawn to the deepest blackness of night. Because a pride aimed at tearing others down and not accepting genuine attempts to understand is a dream come true for me.
It's just shame in disguise.
Anger is an incomplete basis for pride, and as long as people keep using slogans that can be brought down by those who say, "But attitude isn't the whole story. After all, you are disabled," I am invincible.
And I've got them right where it hurts.
What makes it even more luscious is the fact that even acknowledging me is shameful, a total weakness, a vulnerability that cuts straight to the core of the "We're just like everybody else" fiction they band around.
I've got them so afraid of deconstructing that myth that they don't realize that all they'd have to do to begin experiencing freedom from me is take out the word "just."
I am so good it's scary.
I slip right into the cracks, and I grow stronger with every doctor who sees disability as deficit, every therapist who clucks disapproval and never seems happy, and every disabled person who says things like, "You think the world owes you a living because you are disabled."
A flick of the wrist, and that one-dimensional focus becomes my habitat.
And everyone else's habit.
Posted February 23, 2004
Laura Minges, a social work intern, is a freelance writer and public speaker specializing in disability issues. She can be reached at firstname.lastname@example.org
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