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Disordering the lives of children



by Curtis E. Hinkle

Founder, OII


We are no longer hermaphrodites.  We are no longer intersexed.  We are all men and women with disorders of sex development according to many of the medical experts who have managed our lives over the past decades.  We now have a new Consortium for the Management of Disorders of Sex Development and they are proposing to manage the lives of future children born with this disorder.  What are the risks involved with this change in terminology?  I think there are many.


Is intersexuality normal?  No.  However, it is totally natural and not life threatening in most cases.  There are so many different phenomena in our natural world that are not normal.  Our world is filled with people who are not normal in one way or another.  However, what criteria do we use to judge whether these natural phenomena are disorders or not?  What criteria do we use to determine if a natural variation in the human population is good, bad or neutral?  I don’t have the answer to these questions because there seems to be no precise answer.  It varies with the person making the judgments.  I feel that there are two main questions to ask before judging behaviors, variations and other phenomena in the natural world.  Are they harmful to society and if so why?  Do they pose a serious risk to the individual and if so why?  If the reason for the risk to the individual is simply society’s reaction to the issue and not any real threat to that society, then is it the individual who should be deemed disordered or the reactions of those judging the individual?  I think that it would be most likely that the problem is within the one judging the individual, not the individual being judged.


Now that the managers of disorders are ready to start treating children with these disorders of sex development, I have a few questions about how this pejorative terminology will actually be explained to the child and the consequences of such pathological views that will be used to explain not only the physical sex of the child but the implications this will have on all aspects of the child’s life associated with sex, those being their gender identity, gender role, sexual orientation and actual health needs. 


Once a parent is told that their child has a disorder, they most likely will assume there must be some treatment to either cure or manage this disorder.  The consortium is not holding out a cure because this is not something that can be cured or needs to be cured in my opinion.  However, they will become managers along with the parents.  Are they becoming managers just of the child’s body which is the initial reason for the diagnosis?  No, they are becoming managers of all aspects related to sex in the child’s life, their gender and their orientation.  What starts out as a physical disorder to be managed is now viewed as a possible psychological problem with other disorders that could become evident if the child does not comply with the gender imposed and also we have the undercurrent of homophobia.  Some of these managers may inform the parent that their child is more likely to be homosexual as a result of the disorder which could make a lot of parents think that the homosexuality is also a disorder, part of the original diagnosis when told their child has a disorder of sex development.


There are many people who do believe that homosexuality is a disorder and they are involved in research to prove it.  They may not use the word “disorder” at this time but when links are made with intersexed children, it would be much easier to introduce this concept of homosexuality being a disorder also.  Once you decide that certain variations of sex development are disorders, then most behaviors closely connected with that group could be viewed as part of that disorder.


When would a manager of the child’s disorder reveal to the patient that they had a disorder of sex development?  How could this be done in such a way that the child does not feel that puberty, identity and other essential aspects of their lives would not be disordered also?  I don’t think there is.  The very term “disorder” implies that compliance with the protocols will be essential not to be disordered, not to have a disorderly life and that the managers are the only ones who have the solution.  But they are not living in the body of the child.  They are not living in the mind and heart of the child.  Children do not have the words or the experience to understand sex, gender and orientation.


When speaking with children, one needs to keep it simple.  This is why I like Dr. Hazel Beh’s and Dr. Milton Diamond’s suggestion that we use the term variation.  It is easy for a child to grasp that boys and girls come in all varieties.  They can look around them and see that there are all kinds of boys and girls but that each kind or variety is not necessarily a bad thing or a good thing.  We are just all different.  What is damaging to a child is to feel that they are not just a different kind of boy or girl but that they are a disordered or defective boy or girl.  This has very serious implications for the child and could make their future development even more stigmatic and traumatizing while interacting with those in control of their bodies.


Every feeling the child has could be internalized as part of the disorder and something else that needs management and which is shameful.  Not feeling like other boys or girls, not looking like other boys or girls and not having a sexual orientation that is like most other boys or girls could be and most likely will be interpreted by the child as part of their original diagnosis, part of their disorder of sex development. .


Welcoming children into our lives is a wonderful gift for many of us.  Watching them grow and holding out a helping hand not only enriches our lives but builds character and strong bonds which overall helps society as a whole.  Let’s give intersexed children the assistance they need to live in a world that does not understand them and make sure we do not simply manage them and further damage them with pathological, pejorative terms which make them not only feel different but defective and defective in one of the most essential parts of what our society has deemed all people must be to be fully human – their sex.


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