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Intersex Activist Discusses Recent Controversy
by Amy Wooten
2007-06-01

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Intersex activist Emi Koyama made an appearance at the University of Chicago on May 11 to discuss a controversy within the community regarding new medical terminology.

Koyama is director of the Intersex Initiative in Portland, Ore. In her presentation, 'Intersex at the Intersection of Queer Theory and Disability,' Koyama not only provided the basics, but also discussed the debate surrounding the recent introduction of the new medical terminology 'disorder of sex development ( DSD ) ' to replace the term 'intersex.'

Intersex, or DSD, is when an individual's genetic sex ( chromosomes ) or genital appearance ( internal or external ) differs from the 'standard' male or female.

Currently, medical protocol calls for surgery to make the bodies of children born intersex 'normal.' The child is assigned a gender at birth. According to Koyama, current protocol can be painful and harmful, both physically and emotionally. There are several issues involved, such as the fact that the child may grow up to later identify as trans because he or she has been assigned the wrong sex. Also, many of these children are not informed of the surgery—it is kept an isolated secret. Some of these children have also been put on display for the benefit of the medical community, bringing a sense of humiliation and shame to these individuals.

'It's always better to avoid surgery if you can,' Koyama said. She supports giving children a choice and a voice when it comes to this type of surgery. Trans individuals, she said, elect to have sexual reassignment surgery and know the risks involved. These children do not have a choice, and parents are often coerced into having the procedure done by doctors who play on their fears that the child won't grow up to be 'normal,' or will grow up to be gay.

'There are many parents fearing the child becoming gay so much, they get talked into it,' Koyama said.

In most cases, she said, this kind of surgery is not medically necessary, and can be held off until the child can participate fully. Current protocol, Koyama added, holds 'normalcy' in higher regard than the health and well-being of the child.

'Traditionally, medicine has acted as the enforcer of normalcy on the body,' she said.

People often confuse 'intersex' with 'transgender/transsexual,' which is about how someone identifies. However, Koyama says that while many intersex individuals view it as a medical condition, many also view it as an identity—hence, LGBTQI ( the 'I' standing for 'intersex.' )

According to her, although there is debate over the term DSD; it 'is pretty much set, because the intersex term is misleading because gender is not in question,' she said. 'Usually, most people view it as a condition.'

A term that implies a child is beyond the 'gender norm' creates what Koyama dubs a 'panic response' from doctors and parents. 'Rather than raising a 'sexual freak,' they want their child to suffer from a developmental condition,' she added.

In her opinion, using the term 'DSD' to describe these individuals will hopefully leave more time for parents and doctors to learn the risks of surgery and make more rational decisions.

Yet, there are those in the intersex community who find comfort with the identity aspects of the term 'intersex,' Koyama said, adding that many of these individuals may also indentify as transgender or queer. Or, some people find more comfort in using the term as an identity, rather than use a term that describes intersex as a disorder or disability.

Rather than fighting the new terminology, Koyama hopes that creating a medical category will help provide much-needed resources and tools for people.

'Medical categories shouldn't be horrible, but should be used to identify needs and provide funds to provide for these needs,' she said.


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