Freakishness as fuel for activism
I resent being stared at for nothing. If someone is going to diagnose me as a hopeless medical condition desperately waiting for a cure, I want to see that person grovel. At the very least I want them to pay five bucks to watch me limp ferociously as my words wrap around their throat until they choke on their own self-hatred and negative body image. If I'm lucky, there's another person who will leave me and my kind alone. The only big differences between me and freak shows are I get to say words that I write and that I get to pocket the money.
I can't help but be inspired by my crip writer/performer peers who take Freakishness and turn it into fuel for activism. A demand for respect seems the best way of getting celebrity status, whether or not we're seen as Freakish or seen at all.
I have a medical condition called prosopagnosia. Basically, it means that I am unable to recognize faces.
Some favorite misunderstandings I get are: "Oh, I have trouble remembering names, too!" Did they hear me? I said I was unable to recognize faces. People say, "Oh, I know who that is, but I can't remember his name," and they equate this problem of name-recall with my problem of recognizing the face to be able to make the name recall. You first have to recognize somebody before you can remember their name. I cannot recognize people, but I can remember names very well.
I also get, "Yeah, right! You can't recognize faces! What will they think of next?" Believe me, I couldn't have thought up a stranger condition myself, but alas, this is the deck I was dealt, and I can live with that. Why can't everybody else?
Sometimes the response I get is just "Oh!" followed by a bashful retreat. This usually means "Oh, I don't want to have anything to do with him ... he's too strange for me."
Sometimes I am surprised, though, as some of these people will later proceed to ask me some serious questions about what it is like to be me. Recently, after I had introduced myself to somebody, her comment to me was, "I can't imagine what it must be like for you." Most people think they understand immediately, but they can't begin to imagine the subtleties involved; the fact that she realized this left a lasting impression on me.
Recently, Ann Landers published a few columns about prosopagnosia, and depending upon your particular version of the Ann Landers columns, they ranged from reasonably polite but distant to downright nasty. The good news is that, as a result of these columns, several people did a Web search and found my Web page on prosopagnosia.
Alperin's website can be found at
Sick of Not Dead Yet's rhetoric
An individual needs to have the right to physician-assisted suicide, but it must be tempered with a similar opinion by two or three medical professionals. Merely having a disability or a disease should not give one access to physician-assisted suicide; but there are just too many people with extremely severe disabilities and diseases who need to have access to it if they so desire. It's a personal decision and the government has no business controlling it.
My only link to community
I myself grew up suffering from Christopher Reeve Syndrome: yes, boys and girls, I was a Supercrip. Many thanks to Edge writers for helping me to diagnose and treat this disease.
When I first discovered the Rag, it was very hard to stomach. I had swallowed "Crips are inferior" hook, line and sinker. Kind of hard not to, as this garbage is all around us in society and my father told me I was "unworthy of life": verbally, physically, and sexually. Like many others, I have experienced all manner of assault and battery on my person simply because I was born with a disability. Society does not value us and we are taught both directly and indirectly not to value ourselves. The disability rights movement is for me truly a matter of life and death. Had I not discovered it, I probably would have committed suicide. Now I have the nerve to tell good old Dr. Death and all the others like him to: "Do us all a favor and assist in your own suicide."
Right now the Ragged Edge is my only link to my community, the only place I have ever felt at home. I want to participate actively in the movement. How do I get started? How do I find others in my area to connect with?
KELLY (email to: Seeker5490@aol.com)
Readers can contact Kelly by email or via this magazine. --ed
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