Friday, February 10, 2006

Sex & Disabilities--My Social Circle (Part III)

I've always had really great skin. I got through my pregnancy with VanGoghGirl without even a stretch mark to show for it. Despite my childhood bouts with chicken pox, I had no scars. After rounds of surgery, I have scars criss-crossing my back and coming around to my chest. I have numb spots on my body where nerves were cut to get to my tumor. I don't exercise much, so I've put on some weight. Even though I'm still within the healthy weight-range for my height, it was really hard to deal with. Everyone used to wonder at my marvelous metabolism which had kept me at 110 pounds even after having a child. When I put on weight, everyone noticed. Some people made well-meaning comments telling me that I really looked healthier at my new weight or that I'd finally acquired a more womanly figure. All of it made me focus on my changing body when what I really wanted was my old pre-cancer body back.

When friends and acquaintances would say that I looked great, they invariably followed it up with remarking how I "don't even look like I have cancer" or something to that effect. Why couldn't I look great because I'm wearing a really great blouse or some absolutely sexy pants? When you have a disability sometimes people behave as if they can't see anything else about you. I think that's unfortunate because it needn't be that way, but it is, and that's the world we have to deal with, especially if we want it to be different someday.

The German tried his best to help me deal with what had become the new focus for everyone's conversation with me. He bought me lots of pretty new frocks and accoutrements but when people saw me, they saw cancer. Maybe my experiences would be different if I'd had cancer and been cured of it; When people hadn't seen me for a while, they'd ask me if I was in remission yet and I felt like the best thing I could do was tell them that remission wasn't really considered a possibility for me. At first I'd answer the remission question by simply saying, "Not yet." However, that created a situation where people would ask me the question again later because they didn't realize that it was no more likely to have occurred then than it was the first time they asked.

When I let people know that remission wasn't in the works, some assumed that I'd be buying the farm pretty quickly. That didn't happen either. Lots of people don't really understand the difference between "incurable" and "terminal". God only knows how long I'll live with incurable cancer but that doesn't mean that I'm about to die very soon. Now, technically, I am considered terminally ill but I've come to see that this is because my cancer is so rare that they really can't determine how long I'll be able to live with it. So, for all they know, I could outlive lots of folks and that's what I fully intend on doing for as long as God allows me to. So, my feelings about my disabilities don't always match with what other people believe about my condition .

When people look at me, I don't want them to automatically "see" me as a disabled individual. Sometimes I'd like them to see me as a woman first or a person of color first or as a mother first. But, for most people, when they see a person who's limping or in a wheelchair or using some other assistance device, that becomes the first and last thing they see. There is some irony in this situation, I think. Even though people tend to use your disability to define you (e.g. "That handicapped girl", "the retarded boy"), most people still don't automatically recognize it as a topic as worthy of discussion and debate just as much as sexual orientation, gender, or ethnicity has come to be considered.

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