Leave Intersex Out of the DSM-V
Health Care
Anne Tamar-Mattis, 06/17/2011

Leave Intersex Out of the DSM-V

(Health Care) Permanent link

When a child is born with an atypical sex anatomy, often called a disorder of sex development (DSD) or intersex condition, doctors must sometimes make an educated guess about what gender assignment makes the most sense. If the child later decides that the guess was wrong, is that a sign that something is wrong with the child?

There has long been vigorous debate among transgender rights advocates about whether gender identity disorder (GID) should be listed in the Diagnostic and Statistical Manual of Mental Disorders (DSM). With the American Psychiatric Association preparing the new DSM-V, proposed changes to the definition of gender identity disorder have attracted the attention of another community, people born with intersex conditions, or DSD. The latest draft of the DSM-V proposes to expand the definition of gender identity disorder (now tentatively labeled gender dysphoria) to include some people with disorders of sex development (which some prefer to call differences of sexual development).

As the executive director of Advocates for Informed Choice, the only organization in the country focusing on legal advocacy on behalf of children with intersex conditions or DSD, I am very concerned about the move to classify people with intersex conditions who reject their gender assignment as a subtype of the gender dysphoria diagnosis. As things stand now, the presence of a physical intersex condition excludes a person from a diagnosis of GID.

This makes sense. When doctors must make decisions about gender assignment for children with DSD they try to predict what gender identity the child is most likely to develop, based on outcome data about people with similar medical conditions. The latest consensus statement on the treatment of DSD makes predicted gender identity a central criterion for gender assignment. When gender identify is difficult to predict with any assurance, the consensus statement states that doctors can fall back on other factors such as genital shape and surgical convenience. It also recommends allowing the child to reassign sex where the initial assignment turns out to be incorrect. So referring to the desire to change gender assignment as a psychopathology, rather than as evidence of an incorrect medical decision about gender assignment, is at odds with the medical consensus.

Many of my constituents, both affected adults and parents of affected children, are extremely upset by this proposed change. Psychological diagnoses ought not to carry stigma, but they still do and many intersex people do not feel that they should have to take on that stigma as a result of someone else’s incorrect decision. Having this diagnosis in the DSM will also create other legal and medical problems for people with DSD who wish to change their gender assignment:

  • It will make it harder to change gender identity on official documents. So far, Advocates for Informed Choice has been able to argue that barriers that make it harder for transgender people to change their identity documents shouldn't apply to intersex people because they don’t have a gender identity disorder. So, for example, where a transgender person might have to have genital surgery in order to change identity documents, we have successfully argued that the requirement shouldn't apply to a person with a DSD.
  • It will make discrimination easier. In most states, where it is legal to discriminate against transgender people, discrimination against intersex people may still be prohibited under the Americans with Disabilities Act. But the ADA specifically excludes people with gender identity disorder from its protection.
  • It will decrease access to health care. Many health insurance policies specifically exclude gender assignment treatment for gender identity disorder. People with DSD have successfully argued that the exclusion shouldn't apply to them, since by definition they don't have a gender identity disorder.

 

It is wrong that transgender people face so much discrimination. But expanding the definition of gender identity disorder in this way will not help transgender people, and it will only increase the discrimination directed at intersex people. Additionally, inclusion in the DSM may encourage clinicians to view the desire to change gender assignment in a child with DSD as a sign that the child needs to be “fixed” rather than a sign that the medical protocol needs refinement. At the very least, if the DSM-V authors persist with this change, they can mitigate the harm by noting in the text that this condition is often iatrogenic.

Inclusion in the DSM-V remains a hot topic in the transgender community. The availability of a psychological diagnosis has benefits that some feel outweigh the cost in terms of stigma and discrimination, because having a diagnosis can give legitimacy to claims for medical care or to legal claims. For intersex people, however, there is already a medical diagnosis available. Adding a psychological diagnosis will increase stigma and can only decrease access to legal rights and health care. It is the responsibility of mental health providers to refrain from actions that will harm their patients. There is no benefit to this population from inclusion in the DSM-V, and I hope the authors will reconsider.

Anne Tamar-Mattis, an attorney, is executive director for Advocates for Informed Choice. http://twitter.com/@AICdirectorhttp://twitter.com@aiclegal.

Posted by Susan Gilbert at 06/17/2011 12:20:38  | 


With respect this contributor fails to see her own part in this. Calling Intersex people disordered and using pathologizing language is at the heart of the need to further pathologize us when we reject our birth assignments.
We not only do not have a gender identity disorder we likewise do not have a condition or a disorder of sexual development. We have anatomical differences that society finds so reprehensible the only acceptable explanation is a disease model. Your language is as problematic as that proposed by the writers of the DSM who incomprehensibly thought gender identity disorder was too stigmatising yet thought nothing of calling Intersex disorder of sex development. Recall the DSD terminology was invented by physicians who then and now seek to patrol the edges of human sex expression both physical and behavioural by categorising acceptable and unacceptable bodies and rectifying them to normalcy when they are thought to break those boundaries. The medical diagnose for Intersex is as stigmatising for us as the mental "condition” of GID is for Trans.

All pathologizing of difference is stigmatising and when used to describe people who have no illness , disease or reason for medical interventions save for societies discomfort with our bodies it is insultingly so.
In Australia we are able to have our cardinal documents changed in three states, on the basis of a mistaken assignment at the time of birth, simply by producing evidence of our intersex. Every country in the world would do well to follow this example and further respect our rights by including us in anti-discrimination and human rights law.

The notion that bodies that are not clearly male or female are somehow diseased and must be made, so far as possible, to conform to one or the other of those two stereotypes has to be scotched once and for all. .
Posted by: oiiaustralia@bigpond.com ( Email | Visit ) at 6/20/2011 6:00 PM


I was deeply saddened to read this article. the use of language was so stigmatizing and marginalizing people based on their natural human development, that being COMMON and NORMAL. The problem is not the the person, who suffers from issues of gender identity and or intersex "types" NOT "disorder" that such language exists. As the response from OII Australia suggests these terms are "man-made", made by humans for humans.

The problem is, the social binary which no human "within the poles" of male/female fits into. Thus because of not fitting this "assumed" physical sex just like the issues of gender and sexuality and in-fact, that we judge negatively ones difference, moreover we feel through language feel we can hurt it and as we are seeing within the medical community and non-medical community psychology forcing individuals to conform to "society norms" and need to be treated.

Where in-fact, the person does not need to be treated nor are they ill or disordered. What has to changed is the perception of NATURAL, COMMON and NORMAL human development. The social and medical model is what has to change, not the person(s) living with these vast and blended experiences which should be celebrated. To them, they know no different...

As an high performance athlete, and broken these barriers in international sport of which sport mimics society. Thus in this very case, the forced gender testing of women is a social ethics problem, NOT an athlete problem, of which experts in many fields around the world are now rejecting. As we do not do this to men, that this speaks to greater issues of women in society, in this case sport and and to oppress women's gender. It is truly ground breaking.

The use of Disorder of Sex Development (DSD) is an abusive term. No one person(s) sex is the same. For most women and men I know who are born with an Intersex type, it is normal to them. It is only us, society that tells individuals they are different and in-fact disordered. Who and how do we as society feel we even have a RIGHT.

These issues cross over into areas of person's living with "disabilities". Different word, same treatment, medical and social. I participate also in the paralympic program, and these are people who are super human, not disabled... Again terms that are created based on someone's physical differences being social determines they are "LESS THAN", where in-fact it is WE society that is creating the disability and projecting it onto them. We are ones DISABLED, not them. Again all about education and appropriate use of language.

Ironically, which I include in this correspondence an essay in the NY Times this past April, an advocate for the term DSD, but NO LONGER. A meeting attended by experts re international sport hosted in Canada of which I challenged Alice about the term DSD in-front of her peers, evidently she got the message. No mention of DSD. I was quite proud as her peers around her rejected it.


NY Times April 23rd, 2011 Sports - ESSAY Redefining the Sexes in Unequal Terms By ALICE DREGER

ESSAY
Redefining the Sexes in Unequal Terms
Goto Full Article - http://www.nytimes.com/2011/04/24/sports/24testosterone.html?_r=1


Times are changing... and people are waking up to the fact and understanding are rejecting old stereotypes, and becoming more educated. Education helps to remove fears about any topic. Now recognizing clearly this is a social ethics problem, moreover it is society that needs to change not the people.

We must celebrate human diversity, which embraces cultural, social an physical diversity, and combination there of. Thus this means effects each one of us, and that we are all diverse and unique, moreover special.

Change is coming... :)
Posted by: kristenworley@rogers.com ( Email | Visit ) at 6/25/2011 10:27


So let's get this correct. You are director of Advocates for Informed Choice, but you advocate taking choice away from people born with an intersex condition. Where is the informed choice from being pathologise as having a disorder, which they do not?
Just as people born with transsexualism have had the choice taken away from them and are then labeled and stuck with a pathology, you are seeking to submit those born intersex to the same fate?
And against their choice to be doing so.
The only winners in either case, people born intersex and people born with transsexualism, are those in such fields that make money on and retain control over the lives of others.
Posted by: paganfemme@yahoo.com ( Email ) at 6/27/2011 10:16


In respect of my earlier comments I make the following observations and retraction.

I have been fortunate to have had some initial discussions with staff from Dr Tamir-Matis Office . Those discussions have clarified some aspects of her use of language.

I understand Dr Tamir-Mattis' need to use the stigmatising term DSD. I thank her for using , for us , the preferable term Intersex. I also thank her for indicating the term is contentious and that there are alternatives.
I agree with Dr Tamir Mattis that the inclusion of Intersex in the DSM under any termanology will have the kinds of effects that she describes. Our view is that adequate access to medicine and psychological counceling is curently available under specific diagnostic criterion such as CAH , AIS and so on and that further stigmatising our differences and difficulties as a mental disorder will effect us in the way put so clearly by Dr Tamar-Matis

I further observe that the legal arguments being put by Dr Tamar Mathis in fighting for the rights of Intersex people is being done in few places in the world. I congratulate and thank her for her good works.
I ask readers to consider our earlier post in the context of a stigmatised minority being, to us , further stigmatized with the pathologising terminology DSD that has been imposed on us from above.

Gina Wilson OII Australia
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I think the main issue is the social binary which no human "within the poles" of male/female fits into, that is the main reason of not fitting this "assumed" physical sex just like the issues of gender and sexuality and in-fact, that we judge negatively ones difference. so we must think about it seriously.
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