Monday, March 26, 2007

Intersex And Disability Modeling

In my post about BrownFemiPower's Radical Women of Color Theorists series, I mentioned her entry featuring Emi Koyama. It was BFP's entry on Koyama that really motivated me to write the post. Don't get me wrong, I love the other women in the series but it was reading Koyama's writing in the link I mentioned that prompted me to mention the series here on my blog. I am always on the lookout for anything that addresses the intersectionality between people with disabilities communities and other marginalized groups, so I got very curious about Emi Koyama and I figured others might also find her interesting enough to investigate. Well, I just got some feedback that really concerns me.

Gina felt like I was calling Emi a spokesperson for people with disabilities and people who identify as intersexed. She pointed out that, as far as she knows, Emi does not identify herself as intersexed nor does she claim to have a DSD (disorder of sexual development). She also wrote that she does not consider the collection of conditions that are usually included in the intersexed category to be disorders at all, just as many people with Autism feel about their condition.

Like her, I do not believe that all those conditions along the Autism spectrum are disabilities. My daughter has been diagnosed as having Attention Deficit Disorder but I do not believe that the way she is constitutes a disorder at all and there are many others I know who feel the same way. I have a boy that I consider my son who has Asperger's. Both he and my daughter attend a school for children who are gifted and/or talented; They are both in the "and" category. That isn't what most people would consider possible for those with "something wrong with their brain". Instead, I view it as just facets of who they are.

At first, I was willing to believe that maybe there was something wrong with my daughter since when she was diagnosed, she was having trouble in school and finding it difficult to get along with others her age. However, when she was put in the proper environment, these problems disappeared. Experiencing this with her is what initially made me question the biological model of disability--you know, the one where if your body is in any way different from some "norm", then you're disordered or diseased in some way. Before that time, I really didn't see this model as problematic in any way. After all, I had lupus and given how much I went through as a result of it, in my eyes, of course that meant there was something WRONG with me, right? On top of that, I was also diagnosed as having an incurable cancer. The way people treat cancer in this society is more than enough to make a person convinced that they are truly disabled!

Over time though, I've come to view things differently. I may never live to be sixty or seventy years old. I might not ever get the opportunity to watch any grandchildren graduate from high school or college. But I'm thirty years old and in a couple of years, I'll have had a longer lifespan the majority of people in many parts of the world managed to reach before they died. And even if I died this year at thirty, I'll have earned more money than most people on this planet will see in twice as many years, even if they did manage to live that long. I've had a child. I've had crushes and heartaches and long-term relationships and life-long friends. I've read lots of good books and rode plenty of rollercoasters. I've learned a few languages and I've interacted with people from all around the world. I've even managed to have a darn good sex life at times.

Basically, I've had nearly all of the significant experiences that people without cancer or lupus can enjoy. However, because I probably won't live to be sixty or seventy and because I have to submit to lots of procedures and take lots of medications in order to extend my life a bit, the medical system and society classifies me as having something wrong with me. But this is really an arbitrary line that's being drawn. Is an eighty year old person without cancer really able to enjoy their life more than an eighty year old person with cancer? If not, then what makes the latter "disabled" and the former "healthy"?

It's true that every day I go through some kind of difficulty just trying to engage in the same activities that other people can do with relative ease and there is that fact that I probably won't live to be sixty or seventy (which might or might not be a good age to want to reach). However, I'm not even sure that I want to live long enough to find out whether being seventy years old is anything other than a hassle. Oh, I know some people think we're not supposed to say that but the good thing about being me is that I don't have to care about whether people think I should want to get really old. Because I have incurable cancer and it wouldn't be a stretch to say that I'll not see the other side of fifty, people are better able to deal with me saying "To hell with getting old. Screw watching all of my age mates die and getting left behind to wonder if I'll be the next or not".

Not having cancer or lupus would probably be nice and it might be really fun if I never got charged taxes again too. However, nobody would say that there's something wrong with you just because you have to pay taxes, so I'm not sure I want people telling me that I have something wrong with me because I have to deal with cancer and lupus. It's just the way my life is. Now, I don't know whether having an intersexed condition is the exact same way and I'm sure that among all people who identify as intersexed there are many different experiences but it sure wouldn't wouldn't surprise me to find out that they are treated a lot like those who identify themselves as disabled.


Anonymous said...

I feel really weird talking about someone I've only met one time.

Emi Koyama does live with a disibility, needing to walk with assistance. While I do not know anything about her personal history, she does identify as intersex.

bint alshamsa said...

I'm sending Emi an e-mail right now. I think I've really managed to botch this rather nicely so I don't want to engage in any more speculation about who she is and how she identifies herself without asking her. Thank you for adding your input so that I can have a better idea of what to ask her.

OII: said...

The overwhelming majority of intersexed people who are members of the Organisation Intersex International and its support groups in French, English and Spanish with over a 1,000 members, reject DSD terminology and it is not just because the term is considered offensive but the underlying abuse of power of one organisation, ISNA and others who are not intersexed but who have all the access to the media who speak about us but who do not speak with us. How do they know how we feel?

We do not see ourselves as disabled or genetically defective which is what DSD terminology is about.

For an alternative view representing how intersex people feel, see:

Curtis E. Hinkle
Founder, OII