Monday, January 12, 2009

Honesty at Last

By Sophia Siedlberg, OII Spokeswoman - United Kingdom
12 January 2009

Katrina Karkazis' new book, Fixing Sex: Intersex, Medical Authority, and Lived Experience, made me sense that there really are some glimmers of hope. Okay, most reviews of her book start of with "What is a boy or a girl, how do we know XX or XY etc", so this is not a book review. I find such book reviews irritating and they are not conveying or looking at the message as I am reading it.

What I am reading and what I have heard of Karkazis is basically of someone who Alice Dreger should be but isn't. Here is an ethicist who stands back from this debate and looks at it objectively and then takes the time to discuss issues that are of importance to intersex people. While the core focus of her work still revolves around Dr. John Money's policies, much of what she is saying is actually very informative. She certainly explains something that has puzzled me for a long time, and that is how ISNA in particular focused almost exclusively on victims of infant genital feminization. Karkazis points out that much of this early activism in the 1990's had been drawn from the women's health movement. If you add this to the fact that Dr. John Money did operate a policy of blanket feminization, this does go some way to explaining why organizations such as ISNA took the focus that they did. Unfortunately this remained the tone of their activism which resulted in ISNA becoming irrelevant, if not harmful as the debate moved on.

What I particularly like about Karkazis is the way she questions the current medical approach which is indeed focused on the mechanics of sex and the outcomes of infant surgery relative to this. In fact she has pointed out that many follow up studies were about clinical outcomes and sexuality rather than quality of life. For me this is perhaps the most important issue she raises because even today this is what we see in the "DSD" guidelines. They are about sexual function and social acceptability rather than about quality of life and social acceptance.

Karkazis also correctly points out the way intersex people were treated as a threat to the established heterosexual order, by virtue of the treatment being dictated by various moralistic attitudes of the 1950's. My own description of the self same social order "The norm born rut" perhaps caricatures these attitudes, but that caricature does illustrate that as Karkazis herself says, this "moral order" still exists in an oppressive form. I find it deeply oppressive and describes it as I see it. Karkazis describes it more politely but manages to describe it well all the same.

If I am critical of Karkazis, I will say that it would be the focus on how intersex people were treated in the US, citing the case of Dr John Money, and how his blanket feminization even involved the feminization of a boy called David Reimer. But to be fair the American situation is the best documented from a historical perspective.

She mentions OII as "continuing on where ISNA left off", I would say that OII has done this mainly because OII is a multilingual organization which can as a result give voice to those outside the US and as such presents a broader picture of how we are all treated, and were treated in different cultures. Prior to OII there was the AISSG which is multi national and as such again had the advantage of understanding different cultures.

This above all else was ISNA's primary downfall. The political landscape and culture in which they existed did not represent anyone who was intersexed, but not living in the US and not treated under Money's protocols. I would say that Karkazis represents an honesty among academics that has not really been seen before. She openly states that there are people who reject their original sex assignment, and she also puts the discussion in a broader context by discussing the real complexity of the intersex experience. We are now reading more about how intersex people themselves are describing their lives, rather than the narrow clinical stereotypes presented by ISNA. Karkazis refers to other intersex groups and other intersex experiences.

I am sort of hoping that those who have yet to review her book take the time to read beyond the chromosomes and mechanics of sex, and avoid asking the now dumb question "What if it is not a boy or a girl, XX for a girl XY for a boy, what is this?" and actually read what I sense to be the true message of her book, which is to see intersex people as whole people, rather than mere bits of flesh and molecules that should be made to conform to social norms. For me this is the most important thing that can be gleaned from her book and the interviews I have heard her giving. She invites people to look at things in the broader context, to open their eyes and see what intersex people are really saying, and this is good because so far the discussion has been handled by spin doctors who talk about listening to intersex people but have consistently failed to do so. Here we have someone actually saying "listen to intersex people" and actually being honest about a lot of the issues that have been avoided to date.

Katrina Karkazis certainly gets my vote after having read and heard what she has to say.

See also:
Review by Curtis E. Hinkle, founder of OII: Click here

This article is also on OII's website:
Click here

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