Maybe it is the long history of segregation and institutionalization that renders our experience so alien and horrifying. When a segment of the population has been hidden away (which was our culture's equivalent to being exposed on a rock to die), perhaps it is no wonder that a horrified reaction still lingers. Being taken away from society, from your family, isolated and kept apart can be a fate worse than death, can't it? Loss of freedom is after all the punishment we inflict on criminals, it is the worst thing we can imagine, so it's no wonder that disability becomes lumped in with things that are worse than death. And maybe I ought to be patient, to remember that deinstitutionalization only happened in the 1970s, to remember that social change takes time and that a mere 40 years is not long enough to cleanse away the stench of being hidden. That racism still exists despite slavery being abolished 150 years ago. That sexism is still alive and well despite women being granted personhood 79 years ago. But I have to admit, I'm tired of being patient. Mostly, I just want to smack the condescending idiots who get lost in the overcoming while screeching 'snap out of it!', but alas, that's not a terribly effective way of hurrying change along and besides, it would probably hurt my arm.
And I think that's part of the reason why we blog and write: to remove the patina of Other. To document how, within our different experience, we are not different. And most of all, to take the language back from being filtered through the able-bodied perception of disability and illness and ensure that the voices that tell our stories belong to us.
Lene Andersen originally posted this on her personal blog: The Seated View.
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