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Part 3.
Read Part 2.


  Disability Shame Speaks:
'I am alive and doing very well'
A dramatic monologue By Laura Minges

photo of head of young boy Children are particularly vulnerable to my traps. Eventually they learn that they are different, no matter how many people tell them they are just like everyone else. That is when the fun begins, and I work on teaching them that their bodies are not truly important. In the beginning, they don't believe me. They run and jump if they can; rock, roll, and crawl if they can't. Their bodies seem as they really are: Joyously alive, and they move for no one but themselves. They know no other way. But I have my ways of stopping this. I just wait for them to grow up.

There's always exercise, and the lack of it. A failsafe solution. Just polarize attitudes toward exercise to tell people they either get better or they are complacent. Just force them to do little so that they avoid judgment. Then they are judged for doing little, or people think of their bodies as an afterthought. The children learn to define notwhat they want, but what others want and finally what they want is to be left alone about what others think they can do. They've been obedient, objectified children long enough.

They watch other children do more than they can, and feel as if they have failed. They watch other children do less and they become tormentors or guilty friends. They cry for freedom but find the sound gets stuck in their throats, leaving them gasping. And so they become adults whose experience with movement has been so medicalized it feels like a deep and abiding punishment. Go to therapy? Only when forced.

Exercise? Only after the deep sobs subside.

Year after year they try to make peace with their bodies, mostly by forcing themselves back into some exercise program, hoping that this time they will see their own beauty. A noble goal. But they usually end up atoning for stillness, seeing themselves the same way they have been seen for so many years. As defective people. People who do not possess the will to improve, no matter how much their bodies try to tell them they are really disabled. No matter how much non-disabled people's experience of movement remains magically and joyously unmedicalized. (For nondisabled people, it's never about what the therapists call "functional gains.")

Heaven forbid that disabled people want to move because it is fun, a basic human right. Disability needs rehabilitation. It's all about dorsiflexion, hamstring stretching, hip abduction, sandbag weights, breathing capacity, cough strength, grasping, gripping, throwing, balancing, and reaching for the sky.

The therapists are specially trained.

Sure, every once in awhile they get a rebellious patient. Physical therapy is hard work, and some people are just used to having things done for them. It's easier. Certainly, when such patients cry, they are simply feeling afraid of gaining more mobility. That's all there is to it. I mean, after all, not everyone cries. It certainly isn't about exhaustion, lack of privacy, feelings of powerlessness and abuse. Yes, the therapists find it interesting that adults who have been disabled from birth don't come in much. But it's just as well. They are the ones who always cry. Many complain of traumatic flashbacks of abuse when stretched, but everyone knows that a therapist's job is to deal with the body, not the mind and heart. Better to concentrate on the ones who really want to get better.

photo of exercise rings

The newly injured. Oh, what a dream they are. Motivated. Bright. Determined to beat the odds. Working with them is never a waste of time. They always comply, and they beam with pride. Witnessing their determination is a powerful experience. The newly injured look at the tears of the "disabled from birth" crowd and reinforce the idea that it is just fear, tell them you don't want to move. Tell them it's all going to be fine, that it's an excellent thing for you. That disability is bad, wholeness good. That if you do not believe that, you have some serious soul-searching to do as to the reasons you prefer dependency.

After hearing this, those who have been disabled all their lives bolt from the treatment rooms in tears, and nobody questions why. Sometimes therapists even think it serves them right. Wasting all that time with tears and trauma when the choices are so clear. Become independent or don't.

Years after their childhood physical therapy sessions have ended, the "disabled from birth" crowd vacillates between extremes of movement and stillness. They know movement as punishment, but too much stillness as possible death. They hate their bodies and internalize anti-disability bias. Their bodies are awful the way they are. Anything has to be better than this. Even self-punishment. If that's what it takes to get them back in the door of the treatment rooms and gyms, they will be harsher on themselves than the toughest physical trainer.

I gloat at this, my fingers like a vise around them. There's no escape, and silence makes it worse.

I see to it no one discusses this. They all have just enough responsibility for it that nobody says a word.

They come back to their bodies one by one, battling guilt and medicalization. Always tempted to do too much. Always seeing my face. I look different to each of them, so they can't catch me.

And only those who are engaged in a serious war against me even see images of me.

If I could, I'd be invisible to them all.

Because those who see me jab me. They speak out in public forums, saying I am insidious and silent. Slippery and difficult to lay bare. They argue that so many have been ravaged by me that it is almost an initiation process.

They say breaking the silence is difficult and thrilling. They vow that no matter what else they may do in life, they will always fight my many guises. Many of them are particularly concerned for the children I am influencing now. They do not want them to have to fight the battles they have grown so used to.

I rejoice in the fact that disabled people still have not learned that community is my only true kryptonite.

They know from experience it is against my nature to rest. I met many of them young.

In the '60s, '70s and '80s I wormed my way into their lives by having them believe they were responsible for their own condition. Therapists would tell them, at six and seven years old, that if they didn't sit straighter, they would have to wear a body cast. Many children ended up in one. It was the era of the threat. There were not many pediatric positioners available, either, and so children were put into desks where it took a lot of concentration to stay balanced and not fall. When they complained that they could not do it, they were told they could. After all, they had not fallen yet. And when they did, they were put right back in. School became a fearful experience and they worked so hard to say they were fine.

Advances in pediatric seating options have made it difficult for me to gain a foothold on the current generation of children. Now, children can be strapped into floor chairs equipped with attachable lap desks. They can sit in various chairs, and even work while lying down. Their wheelchairs are customized to their support and positioning needs. But the stigma of difference remains. That gives me hope, but I must admit that I'm losing the battle for the youngest children. Seating used to be a major weakness I exploited.

Those seating options take me right out of the equation!

And young children are accepting. If a disability is explained to a child matter-of-factly, they simply accept it.

No matter, really, there is always adolescence. My last best shot. And don't worry; I hit it with an utter vengeance. The children grow and develop, and all the physical changes make them self-conscious. The ones who cannot walk have to deal with caregivers' complaints of back pain, or even outright refusal to assist them. No one seems to think that such a staunch, inflexible position throws a red-hot meteor at body image. It's just a fact of life. They are different. What do parents think disability is, a civil rights issue? Not a chance. And so I sneak right in and nobody cares. The children suffer, but they learn that they have little control. Disability is shameful, after all, and a kid has to learn body shame sooner or later. . . .

And then there are the snooty kids, my precious messengers. The ones who make snide comments like, "You must be eating less, since you've lost weight," and "Do you eat carrots and celery?" if their targets look slightly larger. These are the girls, boys, and young adults whom I have enlisted to fight for me in the war against body esteem.

They pick on the smaller ones as well as the larger ones. I have trained them well.

And no one seems to notice that I claimed them as soon as they knew they walked differently, as soon as they were abused by their parents.

No mention of my victories would be complete without acknowledging abuse.

Back to Part 2  |  Continue to Part 4 .

Posted February 25, 2004

Laura Minges, a social work intern, is a freelance writer and public speaker specializing in disability issues. She can be reached at laura@avenues.org

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