Sunday, April 30, 2006

Disabilism and the Health Care Community

In honor of Blogging Against Disabilism Day (check out the other blogs participating today at Diary of a Goldfish), I think I had better make one thing clear:

I do not speak for "the disability community".

I am a parent of a child with a significant disability and a nurse who practices in the field of pediatric disability and special health care needs. My understanding of the issues of disabilism come from an attempt to understand my own attitudes every bit as much as from the attempt to understand the reactions of others to my child and my clients.

It is because I am a nurse that I have a fundamental misunderstanding of disability against which I must continually guard myself! This is because the health care fields persist in the view that disability is a medical condition and not a social construct. We use a continuum to measure a concept we think we understand, and at one end we put "normal" and at the other end we put "abnormal". And this thinking pervades health care; we use this same yardstick to measure everything.

Even the very fact that we think we know what we mean when we use the word "disabled" is, in itself, an example of prejudice. It's what leads people to identify themselves as part of a subgroup, because the majority group perceives a difference. Perception of difference leads to difference, in a sort of circular experience for all.

Yet the truth is that there is deep-seated, pervasive prejudice against perceived disabilities that affects us all, even those (or maybe, especially those) who are diagnosing it in other people. This is especially prevalent in neonatal areas when a child with a significant and obvious disabling condition is born and there comes an inevitable "quality of life" discussion with the family. Which is, in essence, a discussion of all the things the baby will not be able to do, all the ways in which that baby will never be like a non-disabled person and all the significant supports that child will need if he grows up.

It is hard for doctors and nurses to separate their own pre-judging of disability from the lives they are discussing. For one thing, the prejudice against significant disability is so deep it seems natural. It even seems sensible: "who would want to live that way?" is what I'm often asked. "He will never walk. He will never see!"

If that is not prejudice, what is?

Think about this: is it the condition that is so awful, or the lack of automatic inclusion in society? If we had a society in which it was easy to function despite a sensory or motor disability (we don't! this is fantasy here), why would it matter if one could not walk? If you can envision a place where every single area of every single man-made surface--and as much of the natural world as can be--is accessible to a wheelchair, for instance, and you still persist in thinking it is better to walk on your own two feet, then you need to think about that. That, dear reader, is disabilism. Or ablism, depending on your point of view!

Think about the fact, the very true and obvious fact, that there is nothing separating you or those you love from the experience of living life with a disability then a split second of fate or chance. And if you would not regard your own child as of less worth the minute after the car accident in which he loses a limb or some cognitive functioning then you would the minute before, then what is up with your prejudices against others in the same situation?

My little contribution to Blogging Against Disabilism Day is this: if you are a doctor or nurse taking care of people with disabilities, think hard--very hard--about how you regard disability. Come to start thinking of disability as a social construct (what is wrong with our social structures that make it difficult to be disabled) more than a diagnosis or condition (what is wrong with the person). This doesn't mean stop treating what can be treated, stop researching and questioning and providing good adaptive equipment and equitable access to your services. It does mean examining your conscience about your own knee-jerk reactions to obvious disability; thinking about why this bothers you and why you equate disability with less worth and how you can stop. And how we can begin to think about societies that make room for everyone, reduce barriers to accessibility, and even come to understand how our own perpetuation of the "disability as something bad" pre-judgment--which permeates health care--contributes to the problem.

mary

PS: I'd like to recommend some articles at the DREDF (Disability Rights, Education, and Defense Fund) site: Disability Rights Law and Policy: International and National Perspectives, edited by Mary Lou Breslin and Silvia Yee. In particular, Where Prejudice, Disability, and "Disabilism" Meet, by Silvia Yee.

2 Comments:

Blogger Becca said...

That's a fantastic entry, Mary, I wish I could have put it as well as you did.

Thanks for taking the time to join in!

7:46 PM  
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