Pages

Saturday, March 3, 2007

My disability is not 'severe', thank you

"INDIVIDUAL WITH A SEVERE DISABILITY - An individual with a disability who has a severe physical or mental impairment which seriously limits one or more functional capacities (such as mobility, communication, self-care, self-direction, interpersonal skills, work tolerance, or work skills) "
definition via the Lectric Law Library

SEVERE-" intensely or extremely bad or unpleasant in degree or quality"


Today on three different occasions, I had three different people tell me I had a 'severe disability'.

I truly don't understand the purpose in categorizing or labeling a disability 'severe'. From where I sit, it's a waste of time to tell me that I have a 'severe' disability.

It's like telling a storm chaser that there are 'severe ' high winds ahead. It's windy - could be less windy, could be more windy. Oh look, there's a cow floating by.

But it also isn't like that at all. Because when you tell a person she has a 'severe' disability, exactly what do you mean by that? I can read the definition. I'll admit that I have a few issues with mobility. I use a wheelchair. And I suppose not everyone owns a phone with voice recognition. Self care - well it's a bit of an issue . And, ok, I have already hit the definition and there's more to go.

Why are people telling me that they think my disability is 'severe'? It's because I fit into a definition?

So what?

And let's look at the word 'severe', defined as intensely or extremely bad or unpleasant in degree or quality. Yikes! It sounds like Leonardo DiCaprio's fate in the Man with the Iron Mask.

The only thing that makes it feel 'bad or unpleasant' are the negative reactions of other people. When I can't get enough aide hours or medicine or equipment I need- that's extremely bad and unpleasant in degree and quality.

But that's not about the disability per se.

My experience is entirely different than the one ascribed to me. I suppose I should be constantly amazed at what I can do, given the negative feedback that's tossed at me at times by people who have labeled my disability as 'severe'.

Actually I sit around and lip sync 'I feel good, I knew that I would now' as I use assistive technology to do all kinds of tasks. Because, really, it's all about thinking outside the box. There's no way I feel 'seriously limited in one or more functional capacities' (see above). According to who?

How come I have to put up with this negative terminology simply because I do things differently or need equipment? Isn't this terminology more about the fears of people who are not even disabled and are imagining what it's like to live with a disability?

What is 'severe' is this labeling. It's counterproductive and reactionary. At the very least, 'severe' is the wrong word to use.

And I still say my disabiliity is not 'severe'. I should know. I live with it.

1 comment:

Anonymous said...

it's insensitive for people to judge your disability. sometimes it has to be done to assess it but even then it's pretty unprofessional to throw that in your face. it's like the 'denial' thing - acting like we don't know we're disabled when we try to be independent. keep thinking outside the box - life's too short to be pigeonholed.