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

Monday, October 04, 2004

Deconstructing disability: Role perceptions/eternal child

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.

6. The deviant as an eternal child
Unfortunately, much work in psychology has led to the perpetuation of this role perception. We have measures of intelligence translated into "mental age" apparently because such a measure will help professionals in programming. So we hear people say that Johnny has a mental age of 12 or the mental age of 11 months. Even people who are not professionals talk about a person as having the mind of a 6 year old.

We see people as never growing up. Therefore, we place them in childish enviornments with decorations unfitting for their age. At times we even see adults with disability housed with children, the obvious thinking being that they are functioning at the same age level.

As a reaction to this, beginning around the 1970's, professionals have developed the term "chronologically age appropriate" as a description of programs, interactions, environments, etc. for persons with disability. We want these aspects of their lives to reflect their chronological age, not their supposed mental age. There are a variety of reasons why we would want to do this.

Persons with disability simply by virtue of the fact that they have a disability are often stigmatized. Disability is not seen simply as a characteristic of these individuals, it is a negative characteristic which limits typical positive interactions which might be enjoyed between people. This of course depends upon the mindset of the person without disability, however, at the very least, stigmatizing factors may at least cause one to pause. They cause one to wonder, thinking that something is not quite right. These stigmatizing factors may be overt, or discovered through further interaction. In order to facilitate normalization in interactions, we do well to not add stigmatizing factors to people who may already be devalued by societal constructions.

Back in the early 80's (before I knew better) I once worked at a camp for adults with cognitive disabilities. The theme of the camp was "cowboys and indians." We rode horses, shot guns, made bows with arrows, indian jewelry and headresses, and barbecued. The problem with this was that the persons with disability who attended the camp were adults, some in their 50's with cognitive disability. They had a great time at the camp, but the following week, some were walking around Pasadena California with headresses on carrying a bow and arrow. Now they wouldn't be a danger to anyone (as hard as we tried, we weren't very good bow makers), however, what we did in holding a camp that was not age appropriate was to send them into the community with artifacts that they carried around which did little more than stigmatize them. Can you imagine walking down the street and seeing a fifty year old guy with a bow and arrow and a headress (made out of construction paper no less) walking toward you on the street in Pasadena? I suspect your response wouldn't be to think, "I gotta get me one of those head dresses" but rather "What is wrong with that person?" By engaging in activities which were not age appropriate, particularly those which produced artifacts that the people carried around for the next 3 weeks, we hurt their potential for positive interactions with the general public by stigmatizing them.

By contrast, there is a fellow who attends my church. Lets call him Chuck (not his real name). Now I have know Chuck for probably 10 years now. He is a good looking young man who dresses well. He regularly attends church with his mother, and I believe he works in some sort of sheltered setting. The point is, you would never pick this guy out of a crowd as being someone with a cognitive disability. So in every first interaction, he has the opportunity to sell himself to you (if he cares to) as the great person that he is. In discussion you would quickly learn that he has a disability, however, you would also learn that he is a great guy. Contrast that with the people I helped to stigmatize with the construction paper head dresses. Certainly your approach to them would be different. You would approach thinking these persons have cognitive disabilities.

But the typically reply is, "But they enjoy the juvenile activities." Well, there may be juvenile activities that I enjoy as well, but I am careful to whom I share that interest of mine, or at the least, I have competence in other areas to overcome the deviance of my preoccupation with some juvenile activity.

The poster child for the competency/deviancy hypothesis (I first heard described by Dr. Marc Gold) was Dennis Rodman, the outstanding NBA player. As long as Rodman got 17 rebounds a game, he could behave poorly and act crazy. He really was an outstanding rebounder and defender. But as he aged, his competence (rebounding) began to wane, while his "deviance" (acting crazy) remained the same. Ultimatley, he was unable to play any more in the NBA. It is arguable, however, if he had been a better "citizen" he might have lasted longer as there would have been less deviance to be overcome by competence.

Persons with disability, at times due to their disability and at times due to the societal construction of their disability, carry around "deviance" which must be compensated for with competence. Age inappropriateness on the part of the person with disability only adds to their perceived deviance, requiring more competence of some type to overcome it. If the captain of the football team starts carrying a Spongebob Squarepants back pack, it will be cool. However, if the person with cognitive disability who attends the same school tries to initiate the style, he will be devalued because of the lack of competence he has to counterbalance the deviance.

So by way of instruction, when you interact with a person with cognitive disability, independent of the severity of their condition, the way you interact, as much as possibile the content of your interactions, the enviornment for your interactions, etc. should be as age appropriate as is possible. Your language might be simple in style and content, however, it is not age inappropriate or demeaning, and reflects a respect for the person's age.


No comments: