Why we do not use “Disorder of Sex Development”

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OII delivered one of the first organised English-language responses to the introduction of this terminology (acknowledging also the objections of Milton Diamond at the time, as well as David, Peter and Esther who proofread the Parent’s Handbook, and those of activists from non-English speaking countries at the time, whose work we were not all aware of).There is a huge body of work in the OII archive dealing with this issue, some of which is not relevant today, or involved controversies best left in the past; but some of which is worth repeating as a record of the basis of our objections to the terminology. Just as Milton Diamond and others still do, OII-UK also still objects to the use of DSD in a way that uses ‘disorder’ to describe intersex variations. Much discussion between individuals in OII, as well as it national organisations, and with people outside OII went into formulating a position and response to this development.

This article by Curtis Hinkle, originating in 2007 as a response to the Intersex Initiative, lays out all the arguments for rejecting this terminology, and remained on the website until it was closed in 2012. On the original site, the article included copious links to other articles on the site, as well as copies of letters from people who wrote to Curtis. It is not possible to transfer all that information onto the new UK site easily, so links within the original site have all been nullified or removed.

Policy positions should always be checked against the policy positions of local OII affiliates.

Why we do not use “Disorder of Sex Development”

I would like to point out that OII is not of the opinion that this is a controversy simply about terminology. OII’s members have discussed this in great detail and have taken the time to read the documents and familiarize ourselves with the different experts and activists involved. OII has objections to the DSD Guidelines and the underlying abuse of power used in imposing this term on us without consultation. If others around the world had been consulted and treated with respect and human dignity, there would not be such a controversy.

Please note that the following comments do not necessarily reflect my personal opinions. They reflect various opinions from many different board members and intersexed persons who are members of our support groups. We do not all have the same opinions on this subject.

What follows is a list of objections to DSD terminology and the DSD Guidelines:

  • A. Reducing intersex to a genetic defect
  • B. American imperialism and the abuse of power to define others
  • C. Increased pathologisation of the intersexed child throughout their childhood and adolescence
  • D. Exclusion of intersexed people
  • E. Pathologizing only the gender atypicality of intersex bodies with little emphasis on the underlying specifics of the particular intersex variation
  • F. Eugenics research
  • G. Entrenches arbitrary gender assignments without consultation with the child
  • H. Sexism
  • I. Transphobia and homophobia
  • J. Even in English speaking countries this term will make it more difficult to speak to the actual child about being intersex. 

A. Reducing intersex to a genetic defect

Some members are concerned that DSD is not so much a new medical term for intersex variations but a new “genetic defect” which would put many different medical conditions that have different etiologies all in the same “genetic” birth defect category.

B. American imperialism and the abuse of power to define others

Many people in French-speaking countries feel that the DSD Consortium is typical of United States imperialism and its abuse of power to define others and place them in categories while they have no right to self-representation and definition. One disturbing event that galvanized French activists was the large article devoted to intersex in a magazine with high circulation in France just about the time that the DSD Consortium’s announcement was to be official. This article in French media was exclusively about US activists with only one little footnote about all the great work that French intersex activists are doing in their own country but they have not had access to the French media. They have expressed great resentment that they were not consulted about this change because their input would have helped alleviate some serious problems when this term is translated in to French. We in OII have yet to find a French-speaking intersexed person who is not disturbed about this terminology and the guidelines. Their health systems are very different and the terminology used is very offensive because in French the translation is very ambiguous and leads the layman to think that you are talking about sexual orientation, pedophilia, fetichism, masturbation, etc. (See footnote for examples)

In English, one can make a distinction between: “Sex development” and “Sexual development”. This is not the case in French.

As a result, in French the translation is ambiguous and it gives the idea that what one is talking about is every aspect of one’s sexual development from childhood to maturity, including sexual orientation and gender identity. A Disorder of sexual development could be interpreted to mean almost any perversion, fetish or gender atypical behavior, not something most French adults would probably like to tell a child.

See letters from French speaking intersexed people: 

From France and Belgium
From Quebec
From Switzerland
(not transferred from original site)
C. Increased pathologisation of the intersexed child throughout their childhood and adolescence

When the DSD inducing treatment fails, rather than approaching this as evidence of the shortcomings of the disordering approach, individuals become further pathologised into other categories of disorder (such as GID or some alternative *psychosexual disorder*). This then means that “experts” can avoid difficult questions about what has gone on in the past. Those who do not correspond to the intended outcome of the disordering treatment can then be de-categorised in a way that they do not feature as evidence that the DSD approach has failed to work.

D. Exclusion of intersexed people

The decisions were arrived at by people speaking about us but who have not listened to us. As adults who have experienced what it was like to be an intersexed child, it is tragic that we were not included in the discussions. Why such secrecy? Why such exclusion? Why do people with no experience of either being intersexed or having been treated in childhood conduct these consortiums and arrive at a consensus with no input from the larger community of actual intersexed people?

E. Pathologizing only the gender atypicality of intersex bodies with little emphasis on the underlying specifics of the particular intersex variation

Viewing these variations as a medical illness creates a special medical category which includes an extremely large group of “disorders” which have nothing in common from a medical point of view except that the person is of intermediate sex as established by current norms. Intersex people need health care just as everyone else does but each intersex variation has its specific health needs which will be overlooked when placed in a catch-all umbrella term such as DSD (Disorders of Sex Development) and will make “gender” normalisation the main issue because that is the only factor that all these “disorders” have in common. This is why the term “intersex” is preferable since it includes all the different variations without implying that they have any medical condition in common which they do not. What we have in common is that we are of “intermediate” sex as defined by current norms for male or female. If the medical community sees a need to pathologise each and every variation, it could come up with a specific diagnosis for each one, such as is already common for many intersex variations. This would at least make the medical community aware of each variations unique etiology and specific health needs. Placing them all under the umbrella term gives the impression they are the same disorder and that the disorder is the gender itself. We have gone full-circle and are back to the John Money school with a few minor variations from it.

F. Eugenics research 

Some express concern with the fact that intersex is being used as a roadmap to explain gender identity and sexual orientation and the DSD researchers involved in the elaboration of this research are not concerned about ethical protocols involving the possible misuse of the research. (Section truncated to avoid resurrection of past controversy)

G. Entrenches arbitrary gender assignments without consultation with the child

After reading the publications of the DSD Consortium for parents and doctors, our board members were very disappointed by the fact that once again the DSD guidelines are primarily about GENDER and assuring parents and doctors that the right gender can be chosen without consultation with the child. We resoundingly reject this.

H. Sexism 

As intersex people are used to determine “normal sex-typed behaviors” and their origins, more and more of the population will be affected by the findings of this research (cut). I would suggest that the science behind this cannot be separated from the surrounding sexist culture which finances it and that the basic political and social assumptions which make these issues “important” to the scientific community are rooted in the political need to justify social norms for men and woman based on genetic findings.

I. Transphobia and homophobia

For views about the transphobia and homophobia of the DSD Guidelines:

Pathological (hetero)sexism and the medicalisation of sex in children
Handbook for Parents is transphobic and homophobic

J. Even in English speaking countries this term will most likely make it more difficult to speak to the actual child about being intersex.

Please read:
Disordering the Lives of Children