“During times of universal deceit, telling the truth becomes a revolutionary act.” George Orwell

Tuesday, September 14, 2004

Deconstructing disability: Role perceptions/object of pity

In 1972, Dr. Wolf Wolfensberger, wrote about what he called deviant role perceptions. These were ways in which persons with disability were sometimes perceived. The word "deviant" should be thought of in terms of differing from the norm (American Heritage dictionary). The word deviant itself can be very charged in its connotations. I thought it might be interesting to examine each of these role perceptions briefly and think about the applications for today. The following role perceptions are from Wolfensberger.

3. The deviant as an object of pity
Once it was understood that persons with cognitive disability were not actually a menace, their perception largely changed from a menace to an object of pity. They needed to be placed in environments where they might be protected. A medical model replaced the educational model. So health became the primary concern, not education.

I can remember working at an intermediate care facility for kids with severe to profound mental retardation, where one of the children was given a new pair of tennis shoes. As with anyone, after a few hours, the student developed a blister on his heal, which then began to bleed a bit. Once this came to the attention of the nursing staff, all educational programming was canceled for that student indefinitely into the future till the blister healed. After all, you couldn't expect the poor child who has already experienced so much to have to endure going to school.

This experience illustrates this perception. There are few demands for growth, no "risks" are taken, and the person is infantilized. This is a demeaning position for one to be in. Later in the development of the disability movement, one of the rallying cries was that people need to be afforded the "dignity of risk." That is, that if someone is constantly protected, he will never grow. Risk is not ambraced in a cavalier fashion, like life is some extreme sport, however, dignity does come with risk. It's like the first time your parents gave you the car keys. Risk was involved but it was a calculated risk, an informed risk which moved you to a new level of responsibility. Imagine if you were 25 and were still waiting for your parents to trust you with the car keys. You would feel angry and humiliated at the paternalistic protective environment you would have to endure.

Christians often will, with the best intentions, make comments which illustrate this perspective. We see a person with disability acting in an inappropriate fashion, and someone says, "He can't help the way he is." Well, nine times out of ten he probably can help the way he is, and needs to be told to "cut it the heck out!" I remember a great scene in the movie "Almost an Angel" where a guy in a wheel chair, upset about the fact that he is disabled, acts obnoxioulsy in a bar. A character played by Paul Hogan (Crocodile Dundee) tells him to quit acting like a jerk. The guy doesn't act right, so Paul Hogan sits in a chair, so he is at the guy's level, and punches him in the nose. That is so refreshing in that Hogan sees the man in the chair as a man, not as a disabled man, and treats him like a man.

Another comment sometimes made is that the person with disability is "suffering from his condition." Now there are people who actually suffer from disabling conditions, and I would in no way belittle that. However, to many persons with disability, their condition is the only experience they have in life, so they don't suffer from the loss of some capacity as a person who might have acquired a disability later in life would. If I project suffering on another person, I will either inappropriately see him as some sort of hero, or an object of pity. Neither of these characterizations apply to the average person born with a disability and do little to normalize them to the general society.

And then my personal unfavorite, "There but for the grace of God go I." So, the obvious conclusion is that you have experienced the grace of God, she didn't. The sentiment I understand. Yes, perhaps I should be grateful that my life experience is what it is. But I do little for the person with disability or myself for that matter in just celebrating that I am not disabled. A better reaction would be to celebrate the grace of God to you by doing something to help, befriend, support, or do something positive with the life you have received.

It is also interesting to contrast this statement, however, with the response which Paul relates when he asks God to take away his "thorn." Paul says that God relates to him that, "My grace is sufficient for you." If that is indeed the case, Paul might be able to say, "Here by the grace of God go I" as he carries his disability.

Somehow there is something which is not entirely negative about disability that we as people just don't appear to get.


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