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Since its introduction in 2005, the term "disorders of sex development" (or DSD) has stirred a great deal of controversy, emphatically among internet-based intersex groups. This document is intended to help readers make sense of the conflicting claims and arguments of supporters, critics, and skeptics of "DSD," in order to help facilitate civil and constructive exchange of ideas.
This document is NOT designed to answer questions about DSD, intersex, or any medical issues: for that, please take a look at our Intersex FAQ. It is also not designed to persuade readers to any particular position about the use of any particular terminology, although the author's personal bias may creep in. Please use this FAQ as a starting point, not as a definitive source of everything there is to know about the DSD controversy.
If you have any comments or suggestions regarding this document, please email dsdfaq@intersexinitiative.org. Please make your comments specific (if it helps, quote sentences that you are responding to). I would also welcome additional questions you want to see answered.
DSD is an acronym for "Disorders of Sex Development." Defined as "congenital conditions in which development of chromosomal, gonadal, or anatomical sex is atypical," DSD was designed to replace archaic terms "true hermaphrodite" and male and female "pseudo-hermaphrodite," as well as the imprecise term "intersex."
However, DSD is not simply synonymous with "intersex." While "hermaphrodite" and "intersex" both clearly refer to the whole person (despite attempts to use clever derivatives to name conditions rather than persons, such as "intersex condition" or "hermaphroditism"), "DSD" is specifically construed as a medical condition. In other words, "intersex" is often about who one is; "DSD" is a condition she or he may have.
DSD or disorders of sex development grew out of conversations among a select group of intersex activists, parents' group representatives, medical professionals and scholars that became known as the DSD Consortium, which is responsible for developing two handbooks, "Clinical Guidelines" and "Parents' Handbook."
Alternatives such as "disorders of sexual development" and "disorders of sex differentiation" were also discussed, but the word "sexual" was rejected because it implied sexuality rather than anatomical sex, and "differentiation" because there were competing medical and scientific definition for what "sex differentiation" was. (However, as noted below, such intricate distinctions may not translate well to other languages.)
It should be noted that while the Consortium produced two important handbooks on DSD, three of the intersex adults who have contributed to the guidelines (David Iris Cameron, Esther Morris Leidolf and Peter Trinkl) have pulicly stated that they disagreed with the new terminology. Other adults with intersex conditions also felt left out of the conversation, because they were never consulted about the new terminology.
Nonetheless, the term was also adopted by Lawson Wilkins Pediatric Endocrine Society and European Society for Paediatric Endocrinology in a joint consensus meeting in October 2005, whose recommendations were published in early 2006.
First, "DSD" is considered an improvement over "intersex," which named the whole person rather than a medical condition. Because the term "intersex" implied an identity rather than a condition, many "intersex" individuals--most of whom view themselves as ordinary men and women who happened to have been born with an unusual medical condition--never accepted the label.
Supporters of "DSD" believe that the patients will be better served by naming the condition as a physical developmental issue than something that implies, in many people's minds, a confusion or crisis of gender. For example, parents of newborn with an "intersex" condition might be led to believe that their child would suffer horrible fate due to being a gender outcast, and demand immediate surgeries to "normalize" the child's genitalia; parents who are told that their child has a "DSD" might take the news better, as the problem is understood to be about physical development rather than about gender. Physicians may also be persuaded to take more cautious approach if they view the condition as a medical disorder, rather than a violation of the two-sex system.
It is often argued that the term "DSD" would bring intersex medical treatment into the mainstream of medicine, where principles of informed consent and evidence-based medicine prevail. Because intersex was viewed as something that fell outside of the norms of medicine, intersex medical treatment has been exempt from recent advances in the profession's understanding of medical ethics, quality of life, and sexual health. Supporters of the term "DSD" believe that it would help make intersex medical treatment just like any other.
Since its beginning in the early 1990s, the intersex movement has challenged the idea that intersex bodies are abnormal or diseased. While there are some intersex conditions that may signal an underlying medical problem, they would argue, intersex status itself is not a pathology. It is no surprise, then, that some people consider the presence of the pathologizing word, "disorder" in "DSD," to be a betrayal of what the intersex movement had always stood for.
Further, the term was introduced with little input from intersex patients and activists outside of the leadership of the Intersex Society of North America, which disappointed many of its supporters and fueled the suspicion that its leaders were selling their constituents short. Some have alleged that ISNA and others associated with it now endorse "normalizing" surgeries on intersex children, which is not the case, and yet many believe that calling it a "disorder" would lead to more surgeries, regardless of the intent behind the change, because the designation of something as a pathology calls out for a remedy.
Still others view the term "DSD" as a shift away from association with LGBT movements, or that it is fundamentally homophobic and transphobic in construction, since it was partly designed to circumvent parents' misguided homophobic and transphobic reaction to the term "intersex." Critics of "DSD" may view the term as reminiscent of other ways in which one's gender and sexual embodiments have been pathologized, namely the psychopathologization of homosexuality and transsexuality (gender identity disorder). In fact, some view the fight against the label "DSD" as homologous to that against "gender identity disorder" within trans communities.
Let's begin by understanding what both sides actually agree on. First, supporters and opponents of "DSD" do not necessarily disagree over how intersex children should be treated. It is not true that supporters of "DSD" endorse medically unnecessary surgeries on children: there are those who support it, mostly doctors and parents, but many supporters of the term "DSD" actually oppose unconsensual genital surgeries on children just as much. Medical treatment does not have to equal surgeries: in fact, activists have called for more resources such as counseling and support groups to be offered to parents as well as children old enough to participate in it.
Another point many of us actually agree on is that we all want to end stigma. It is not the case that one side is against stigma and the other disinterested: both sides wish to stop stigmatization of intersex bodies, but there are competing perceptions over which label stigmatizes intersex bodies further. Supporters of "DSD" believe that the term would make intersex just like any other medical condition--that is, "normal" medical condition to have. Opponent views the designation of intersex as a medical "disorder" make it abnormal.
This is not a new conundrum: every time something is entered into medical classification, it can both stigmatize and legitimatize the condition at the same time. Take an example of postpartum depression: as the concept entered into the medical classification, it helped to foster society's understanding for and support toward women dealing with it. On the male side, when impotence became erectile dysfunction, it became safe enough for the former Presidential candidate Bob Dole to publicly talk about it.
In the end, what we are discussing is not either for or against stigma, but whether or not "DSD" strikes a favorable balance between benefits and costs, and people disagree over the relative merits and disadvantages of the term. Reasonable people can disagree over the relative merits and demerits of this trade-off.
Variations of Sex Development (VSD) is an alternative to "DSD" promoted principally by Milton Diamond and colleagues at University of Hawai'i. Diamond acknowledges the problem with the terms like "intersex" and "hermaphrodite," but believes that "DSD" sends the wrong message. Diamond argues that VSD is free of value judgment, while neither prohibiting or mandating any particular set of medical interventions.
The rationale for using the term "VSD" comes from Diamond's belief that intersexuality (or VSD) "inextricably involve sexual and gender identity, sexuality, and one's innate sense of self," that is, the whole person. However, the term "DSD" was specifically designed to name a condition, rather than a whole person like older terms "intersex" and "hermaphrodite" did. Despite Diamond's view that "DSD" is an arrogant way for medicine to "classify people," it is really not intended to classify people at all, just medical conditions.
Critics of the term "VSD" appreciate the sentiment behind Diamond's proposal, but disagree because it is imprecise: "variation" would include non-intersex, normative males and females, and as such would not mean anything. Another concern is that the term is too "politically correct" to ever be taken seriously by medical establishment: after all, doctors don't treat "variations"--which may be exactly the point Diamond is trying to make (i.e. intersex bodies do not need medical treatment). But we are talking about medical terminology here, and obviously intersex people and their families often need some medical attention, including screening, hormone replacement, counseling, and referrals to support groups.
Other similar proposals include divergence of sex development (Elizabeth Reis), which cleverly preserves the acronym, as well as anomalies of sex development, which may be more stigmatizing, or less, depending on one's perspective. (And speaking of clever word play, Uday Foundation of India spells out DSD as "discriminated and socially distanced." Nice.)
No. "DSD" is simply a new name for the medical condition, and does not prevent the development of social and political "intersex" identities or communities for people born with such conditions. In fact, it could be argued that the removal of the word "intersex" from medical lexicon might not be an impediment, but actually a requirement, before "intersex" social identities could take off (imagine if "gender identity disorder" had been labeled "transgender syndrome" instead--would there have been burgeoning transgender movements and communities?).
Response to the term "DSD" varies around the world, partly due to how the term is translated to different languages, and also due to different social norms and circumstances. For instance, intersex activists in Japan had come up with the term "sei hattasu shougai" (sex development disorder) prior to the introduction of "DSD" in the United States, and are quite receptive to the term. On the other hand, French translation of DSD, "troubles du développment sexuel," could easily be confused with sexual perversion (since there is no distinction between "sex" and "sexual" in French when used as an adjective), and many French-speaking intersex people are not happy about it.
That said, there is an overwhelming resistance to the U.S.- and Anglo-centric process by which new terms are developed and proliferated across the world, reflecting the United States' cultural, economic and military dominance over the rest of the world. If you live in the U.S., please be sensitive to the unintended consequences of changing nomenclature in the U.S. on people outside of its national boundaries.
This is in no way an exhaustive list of various viewpoints that have been published, but it's a start. Please be advised that while I take full responsibility of fact-checking this FAQ, I do not vouch for the accuracy of the claims made by these sources.
by Elizabeth ReisPlease contact us if you wish to suggest additional resources.
This document was written by Emi Koyama, director of Intersex Initiative. My personal opinion is that "DSD" is not perfect, but an acceptable terminology to refer to the medical aspect of intersexuality, even as I continue to use "intersex" in every other way, including in our organization's name.
If given a choice, I would personally prefer "anomalies of sex development" over "disorders of sex development" and I see no reason why the medical community would reject that (unlike "variations of sex development" which they certainly will). But I don't feel that it is good use of my limited time and resources to actively challenge "DSD."
I feel that many in our society have a naiveté about the medical establishment. Even Alice Dreger thought that when she first spoke with ISNA founder Cheryl Chase, and learned about the genital surgeries on intersex children, she assumed that it would only take six months or so before she could convince doctors to change their practice, because it was so sensible to do so. In reality, surgeries continue to this date, after over ten years of struggling.
The fact is that activists and patient-advocates have little influence on what medical establishment decide. While that is not a reason to abandon our struggle to create a better arrangement for people with intersex conditions (au contraire!), it means that we will always face tough trade-offs when dealing with the medical establishment.
For example, only two intersex activists were invited to the LWPES/ESPE meeting that produced "Consensus Statement" and sanctioned the term "DSD," that brought together over 40 medical professionals. Then, the participants subdivided into six working groups, effectively denying activists' ability to influence majority of proceedings. Cheryl Chase was outnumbered in the "medical management" working group by "experts" like Patricia Donahue and Claude Migeon; Barbara, another intersex activist, was surrounded by Heino Meyer-Bahlburg and Kenneth Zucker.
One could reasonably argue that the whole setup was rigged and activists should have simply run out of the door: however, doing so would mean that they would forfeit the hard-earned opportunity to move the process foward to make things a little bit better for the next generation. Such is the dilemma we as activists face.
Again, reasonable people can disagree over how far we should be prepared to compromise and where to draw the line. Reasonable people can disagree whether the trade-off was worthwhile. Some may believe that engagement is the key to changing doctors' minds, while others prefer more in-your-face confrontation. But in the end, we all share the same goal, which is to create a world that accepts and celebrates differences, rather than stigmatizing and eliminating them.
I am currently writing a new article to explain more fully how I feel about the nomenclature change. In the meantime, you are invited to read my slightly outdated (February 2006) talk I gave at University of Vermont.
I'd like to thank the following people for reviewing earlier versions of this document, and offering feedbacks. They are identified here to acknowledge their input, but they do not necessarily agree with the content of this document (in fact, none of them probably agrees with everything). I am solely responsible for this FAQ.
Please keep your feedback coming! Email dsdfaq@intersexinitiative.org for any comments or questions.
This material is provided to you by:
Intersex Initiative
PO Box 40570, Portland OR 97240
Email: info@intersexinitiative.org