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more on pretenders



In my original entry on pretenders, I said:




What a tragedy that B's family and other adults never helped him (her?) learn how to include the cousin fully while retaining his/her own identity! I tend to believe it would still be possible to learn this, to develop one's own identity. It wouldn't be easy, but it would be possible.




My sense is that this is a type of identity disorder that develops out of needing information about disability and not getting it. A. explained this very well, and I actually do sense that it is at least in part about trying to identify, to experience the disability because it's the only way to understand it. A. said:




I was, I believe, affected at an early age, probably around 8. On holiday I noticed that the little girl next door wore a brace on her leg. Like most children I was curious, WHY?, what was wrong with her leg, what did the brace do? etc. I asked my mum but got no satisfactory answer, probably my mum was embarrassed by the question or didn't even know the answer. The result, being a somewhat resourceful little boy, I experimented, with bits of wood, belts, the cord from my pyjamas, I was curious and needed to find out what did it feel like. I had effectively been imprinted at a time when I was becoming aware of girls, I had been 'touched' by one who had had polio. As I grew my curiosity grew and with it the attraction to girls with braces.




This is a very normal way for children to understand disability. As I mentioned in my earlier post, simulation is a useful tool. Where is the line between useful simulation and disordered identity? I don't know. In my thinking, the line is drawn when a person can answer the question: "Why do you do this?" I can remember my aunt telling me that my cousins wore blindfolds all day because they wanted to see what being blind was like. This didn't bother me, but it would bother me if they did it all the time. It would then feel like mockery instead of an effort to understand. And if they then said they needed a cane or dog guide or other adaptive things that I really do physically need, that feeling of mockery would intensify. Identity disorders are treatable. It's very possible that with appropriate treatment, a "pretender"--is there really a good term for a person who has a deep-seated psychological need for braces or other equipment?--could overcome this dependency on something that is not physically necessary. The question in mind is whether any of them want to overcome it. If so, then I would encourage them to keep looking because somewhere out there is a therapist/counselor who cares and who would at least be willing to think outside the box and learn about something that isn't documented in the psychology textbooks.




I have my knee jerk responses to the fact that there are people out there who claim to need something that is not a physical need. I am deeply disturbed to know that anyone would deliberately choose not to use the legs--or eyes or ears--they have. I actually struggle with this to some degree when talking with people in the "blindness community." There is a contingent of people who believe that children with severe visual impairments are often pushed to rely too heavily on their vision and that the answer is forsaking "visual skills instruction" altogether. I'm all for being realistic about when it's time to use nonvisual techniques, but I'm also grateful that I had instruction in how to use my vision and that I have been encouraged to use it. In my mind, to do otherwise would be living a lie. To act as if I have no vision is to both dishonor myself and to falsely identify with people who have never had vision. This philosophy has meant that I've had to redefine my identity as I have lost my vision, but redefining identity is actually very natural. We redefine our identity when we graduate from high school and go to college, when we get a new job, when we get married, when we become parents, when we retire. These are very natural life changes, and redefining my identity in terms of decreasing visual ability is a natural life change for me. So it disturbs me deeply when I meet people who don't take advantage of their abilities--as deeply as it disturbs me when I meet people who can't/won't acknowledge theirlimitations.



I don't believe that the "pretenders" are intentionally mocking people with disabilities. If they feel trapped in an identity that doesn't include their abilities, I do have compassion for them just as I have compassion for a child who never learns how to use her eyes. I hope somehow that this comes through in what I'm writing.

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Sarah Blake LaRose
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