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

Wednesday, September 15, 2004

Deconstructing disability: Role perceptions/sick

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.

4. The deviant as sick
Another role perception described by Wolfensberger, is the disabled person as "sick." They are a diseased organism. As stated previously, that is why a medical model was adopted to treat them. People with disability are patients, not students or residents. Decisions are often made by medical personnel. It is true that there are many areas in which medical personnel are the best to make a particular decision, however, often they are not.

I once had the opportunity to work with Dr. Richard Koch. Dr. Koch at that time, was the director of the national collaborative PKU study(phenylketonuria, an inborn error of metabolism which without treatment can result in severe mental retardation). Even in the midst of the powerful research he was doing which ultimately affected the lives of thousands of persons experiencing this genetic disorder, his perspective was that the medical profession had very little to offer most people with disability. They could provide a diagnosis most of the time, but beyond that, it was the job of educators to improve the lives of the persons with disability.

Educators have at times adopted this same perspective, referring to their services not as education, but as "educational therapy."

The take home lesson of this particular role perception is that people with cerebral palsy are not contagious and neither are persons with down syndrome. The appearance of having a cold has to do with aspects of their disabilities (although I guess they could at times also have a cold). People do not "suffer" from down syndrome in the same way that someone suffers from the flu.
Additonally, there isn't a medication, for persons with down syndrome or cerebral palsy or most other forms of disability that makes it go away.

The life experience as persons with down syndrome is their life experience. How could a person with down syndrome, a congenital genetic syndrome, know an existence other than that which they were born with? Those who are less disabled cognitively, might realize they are different, but I suspect such thoughts are atypical.

Personally, I can imagine what it might be like to be blind or regularly use a wheel chair, but I really don't know. I do have some experience of feeling different because of a lack of math ability. Such a problem is hardly comparable to blindness or other disabilities, however, it can be used for a point of discussion. I am amazed at people around who understand things which I don't, but I really don't know what it is like to understand those things. My son, for example, was doing advanced calculus as a high school senior. I don't know what it is like to have that level of math ability. I guess I can imagine being able to understand something that I don't understand, but that is about the limit for me. As a medical student, I could imagine being able to take in all of the information provided, commit it to memory, and then retrieve it as necessary to answer questions on a test or from an instructor. However, the fact that I flunked out of medical school indicates that I was in a place that was beyond my ability to do those things. I know that I largely only think of myself as different when the environment that I am in makes me feel that way (e.g. medical school). In other environments, I appear to have a level of understanding beyond many of those who are in the environment with me. In those environments, I have the ability to either accentuate my strengths in comparison to another's weaknesses, or attempt to integrate them with myself and myself with them. I have a notion of what it is like to be them and they have a notion of what it is like to be me, but we really don't know.

I can remember my father used to talk with frustration about a comment my grandmother would make when she was feeling depressed. She would say, "Nobody knows how I feel." My father, a person with severe diabetes, chafed at that statement, saying, "Well, nobody knows how I feel." Which really didn't help my grandmother.

I believe this is the same for most persons with cognitive disability. They don't know how I feel and I don't know how they feel.

One thing I have to get through my head, however, is that their disability is their life experience. They are not sick, they have a different life experience. If I treat them as if they are sick, I project on them something which they are not feeling and I illustrate my own ignorance about what their life experience actually is.


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