At a recent conference I attended there was a talk about what they called the Sick Model of disability.
(ETA: link fixed at bottom)
What is the sick model of disability? In this model, all things negative stem from your impairment. This is in contrast to the Social Model, in which some negative things stem from your disability, and many other things do not -- they stem from how society interacts with your impairment; this is the true disability.
An example: My impairment is a spinal cord injury. Due to my type of SCI, I cannot use my legs to walk. This is completely due to my impairment.
However, when I encounter a building that has stairs but no ramp or elevator for me to utilize to get into it, this is how disability is manifested. A person with poor vision has a vision impairment; with proper glasses this may cease to be a disabling condition. Did his impairment change? No, but the technology he utilized did, and now he can drive and remember people by their facial details. Nothing about his body changed. The technology - part of society - did. Therefore, he is no longer "disabled".
The sick model says that disability, impairment, it's all in our bodies and all on us. If we can't do something, well, that's just a shame that we ended up like that. I get this attitude a lot when I try to enlist certain people to help me try to figure out how to do new things that I haven't tried with my new, disabled body yet. For them it's not a matter of figuring things out, it's a matter of trying to figure out how to gently force me to accept my limitations. This does not foster ingenuity, let me tell you.
The sick model of disability breeds several expectations on both sides of the aisle, able bodied and disabled, such as the belief that a person with a disability:
- Will not get a job or otherwise contribute to society
- Will do nothing but collect benefits and watch TV
- Will not be getting married, building a family or even dating
- Will not drive, participate in recreation or vacations
I say the above things as someone who once expected each and every one for myself. I know that this may not be easy to hear for those of you who feel that you cannot do much besides collect benefits and watch the world go by. But this past week I have learned a lot about the gift of expectation.
Several years ago I was a very different person than I am now. I wish I could explain what it feels like to have a job after feeling locked out of one for years. To get up and go somewhere and contribute, to be part of a team, just to have people ask you how you're doing on a damn daily basis - that alone is so important, and is one of those things you don't know the importance of until it's gone. And most important of all, at work people expect things of you. This is great for your self-esteem.
When I'm tired, in terrible pain, and my mental illness is rearing its ugly head, I feel the judgmental gaze of the sick model coming down upon me. Poor girl, too bad her life is over. Too bad, there was such potential.
But don't we all need times when we say no, I cannot contribute today? There must be a balance somewhere, between laying in bed all day every day with the TV on and overworking yourself to the point of illness or injury.
And what about love -- can we not say the same things? No, I cannot support you today, I am sorry my dear I am in too much pain? I have had to say something similar, and it is terrible. We want to be there for the other no matter what, in all ways, but we all have our limitations, though many are invisible.
I suppose I am having some anxiety about moving away totally from the sick model; wait, my brain says, sometimes I can't do things! Isn't that OK?
Yes, that is OK. What is not OK is expecting that because your body and/or brain is different, or is different than it used to be, then that means you do not have anything to contribute. You have to move past what you used to do. You have to grow, or else you will end up having watched 186,000 hours of TV and that will be your accomplishment. Is that what you want? Is that what you think anybody wants?
Expectation of contribution is what people with disabilities need. We also then need, of course, the tools with which to accomplish this (Don't just say "Get a job, ya bum!"). And there is such a thing as discrimination, so watch out for that -- and sometimes you can't control, you just have to move forward.
Just keep moving forward. So many people with disabilities stop, especially if they acquire their disability later in life. It may not be easy, but what else are you going to do but keep on moving?
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(I'm still selling on Etsy - the holidays are coming up! Thanks for your support.)