Sunday, October 19, 2008

Being Part of the Disabled Community Versus Being a Member of a Minority Group (Part I)

I have a friend who is a quadriplegic. While he gets around in a wheelchair, I would not, though, view him as disabled; he leads a perfectly functional life and, to the best of my knowledge, is completely self sufficient. Everything he does, though, takes thought and planning. For example he can drive, but he needs to use a special contraption that allows him to control the breaks and the accelerator by hand. (FDR used something similar when he drove.) Getting in and out of a car is an elaborate ritual. He has to break his wheelchair down in order to get it into the back. To get out he needs to put the wheelchair back together and shift his body from the seat of the car into the chair. I admire him for how he is able to live, particularly since I am certain that I, put in a similar situation, God forbid, would not be able to cope like he does.

To make the issue of disability more complicated, my quadriplegic friend has certain advantages over other people. Since his lifestyle requires such constant awareness, he possesses a set of thinking patterns that most other people do not have. I imagine that it is only a matter of time and advocacy until people in the general business community realize that the skills that people like my friend have are a lot more valuable to a company than a functional pair of legs and start actively hiring people in wheelchairs not as a matter of charity or goodwill but as a matter of simple self interest. We may see a time when “wheel chair thinking” becomes a valuable skill to be taught even to those not in wheel chairs.

From a perspective of disability advocacy, my friend is a two edged sword. On one hand he is a poster child for what people can do even from a wheelchair. On the other hand having someone like him can be counter-productive. He does not inspire pity; people do not come away from meeting him thinking what a horrible situation he is in and how miserable it must be to be a quadriplegic. He inspires hope and hope can be a dangerous thing. He creates a standard that is hard to live up to. What does one say to those quadriplegics who never become as functional as he is; are they “failures?” As I see it, the needs of my friend are very different than that of a traditionally disabled person. His situation is a closer fit to being a minority. He does not need people to “help” him; what he requires is tolerance, a certain awareness and understanding on the part of society. People need to get over their ambulatory biases and realize that there are people who live their lives without a functional pair of legs and that this is a perfectly legitimate lifestyle option.

My friend’s situation as very high functioning quadriplegic is not that different from being black or being gay. I work and study on a college campus. We have black advocacy groups to make sure that I, as a white person from a middle class background, do not immediately assume that if a male black student comes into class wearing baggy jeans, a baseball cap in backwards and several gold necklaces that he is a criminal likely to mug me on my way home. Similarly there are gay advocacy groups to make sure that I, as a heterosexual male, do not freak out and assume that if a gay student comes over to me and compliments me on my fashion sense that this student had a crush on me and is trying to tempt me into having gay sex with him. I should not feel threatened by having gay students. As their history teacher, I should not be yelling at them that they are evil sinners, going against nature and are bound straight to hell. I should also not try to “turn” them straight or tell them that I am praying for them to change their ways. I need to understand that my way of life and my values do not apply to everyone. That other people have alternative lifestyles that are perfectly legitimate. Being on a college campus means living in a multicultural environment; if I cannot manage that I should find employment somewhere else.

(To be continued …)


Anonymous said...

One of the things that sometimes bothers me about chronic illness advocacy, is that the people who are visible members of the community are often the healthiest or best functioning.

As an example: I have fibromyalgia and chronic fatigue syndrome. 1/3 of the people with fibro are unable to hold down a full-time job. Many more are barely able to live a life beyond working. Yet the people pictures in advocacy projects are always the healthiest, best functioning and most normal fibro patients, with full, active lives. Yes, they are a part of the illness community, but I want to see more variety! The healthy public gets a very skewed idea of what fibro patients can do if they only see the healthiest among us.

Elyse said...

I agree with "anonymous" that more of a variety needs to be shown. Unfortunately, that is logistically difficult. For example, I attended a rally around Ohio's health and human services budget a few years ago. We wanted to show the consumers' points of view, but with a limited number of buses that were wheelchair-accessible (due to limited grassroots funding), participation was also limited. We tried to have seniors write their stories even if they weren't able to attend the rally, but for some seniors with cognitive impairment, even this task wasn't feasible.

Isaac said...

Just a point- I don't think a quadriplegic can use his arms - I believe you are referring to a paraplegic.

Izgad said...

While quadriplegics suffer some loss of function to their arms many of them do at least have some use of their arms. There are different levels.