Saturday, December 27, 2008

The desexualization of people with disabilities

The following is a reprint of a post I made on apositive.org back in January. When I made this I was still angry about something that had happened to me a few months earlier so, while the issues are still relevant, I don't feel as intensely about some of this as I did at the time.

After [a fellow forum member] suggested that this topic might make an interesting thread I started thinking about starting one. However, I've put it off for a while because this is a very personal thing for me and in order to really explain what it's like I'm going to have to say things about myself that are very difficult to express. If some of this sounds melodramatic it's certainly not intended to be, but please bear with me because this is one of those things that I can not discuss from a purely intellectual point of view. I'm doing this because I want to help people understand what it's like on this side of the situation.

A few years ago when I was taking a Sociology class I came across a section that discussed sexuality and disabilities. This section mentioned that people who have disabilities are often treated as if they are asexual even though they usually aren't. This was the first time I had ever seen the term "asexual" used in reference to a human being and it wasn't until years later that I started to identify with asexuality myself. As an asexual I don't really understand the importance of sexuality to other people but I do understand the emotional impact of being marginalized so I can relate to how others feel about being desexualized.

Someone who is sexual can probably explain what sex is about much better than I can but, as it has been explained to me, sex is often a unique emotional experience. I've seen several instances where asexuals have said that "sex is just one way of expressing love," and for us it seems that way but for most people it really is much more than that. Some of the emotions involved in sex are not felt in any other type of situation. We may not experience things that way ourselves but other people do and that's why it's so important to them.

It probably seems strange that I get annoyed when people treat me as asexual as a result of my disability since I actually am asexual. But it does bother me very much because it's not really about sex, it's about being marginalized and treated as less human than the rest of the world. I've been marginalized my entire life by my family, friends, teachers and society in general. People don't usually know I'm disabled at first because it's not obvious but when I tell them about it they invariably start treating me differently. It happens both in real life and online. I know people don't try to do it or even realize that they are doing it, but I notice it. And it's very frustrating.

The wounds from this treatment can run very deep. Shortly after I was born my parents realized that I had Cystic Fibrosis and it was emotionally devastating for my mother. She had already lost two children from it and couldn't handle going through it a third time, as a result we never really bonded. My father was emotionally distant anyway so I don't know how it affected him. Most of my siblings were a lot older than me and had other things on their minds, the ones closest to me in age were both boys and we just fought most of the time. Because of this lack of close bonds in childhood I have problems forming healthy relationships now. During my life several people have told me they loved me but I honestly didn't ever believe them.

Unfortunately, going through things like this often turns those who experience it into real assholes (I have my moments). There's a certain intensity that develops inside of us that can cause a lot of problems. I'm usually a nice guy, whether I like the person I'm talking to or not, but sometimes the frustration boils to the surface and the only thing that runs through my mind is, "Hulk smash!" I have more than my share of regret for things I've said and done in the heat of the moment and I spent a long time trying to change myself, with very little success. Sometimes the only effective way to stop myself from unleashing my anger on others is to just turn around and walk away from the situation entirely.

I am learning how to temper the anger and other over-the-top emotions that come up because I don't like being an asshole. These days I usually recognize when what I'm feeling isn't really rational and stop myself from acting on it. I still slip up from time to time though. However, I'm also starting to embrace my intensity because it's the only thing that has kept me alive all these years. It's the reason I get out of bed in the morning and go out and face a world that would just as soon pat me on the head and send me back home with a coloring book. It's what allows me to swallow a handful of pills and push a needle through my skin to inject myself with insulin every time I eat. It has also helped me to get through things when people around me caved under the pressure, the very people who looked down on me before.

The moral of the story is: we may not be normal but we are not lesser beings. We may not be able to do everything that ordinary people can but the fire that burns inside of us allows us to do things that ordinary people can't. And we deserve to be treated with dignity and respect and loved as equals.

Also . . . I can kill you with my brain.

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