Going beyond X and Y: OII response
We recognise the medical factors and scientific developments and social issues that have led people to seek to develop a new terminology for intersex; but we also understand that intersex is part of human diversity and support Milton Diamond in his call to use "variation" instead of "disorder". We regard the term "Variations of Sex Differentiation" (VSD) as more accurate than using "Disorder of Sex Development" (DSD) because it describes a biological phenomenon as a variation, rather than as a disordered state. Disorder can have emotive and pejorative connotations, especially when misused to categorize a group of people.
"Disorder" may work as a medical descriptor, but because most intersex conditions present a range of symptoms, beyond just ambiguous genitalia, using "Disorder" and "Sex/Sexual" puts the focus primarily on sexual characteristics. The schema offered by the consortium appears inconsistent: at times DSD is used in relation to probable genetic causes regardless of symptoms, at others symptoms alone are described as DSD; those symptoms are discounted as DSD where they are not severe enough and there is no known underlying cause. "Variation" puts the focus on a range of underlying causes, symptoms and expressions, and avoids the arbitrariness clearly evident in the taxonomy produced by the consortium.
"DSD" represents a model of "disordered sex", as in "disordered male" or "disordered female"; it is this model which has been implemented in an arbitrary manner in the past (as in male/female pseudohermaphrodite). "VSD" does not focus on a "disordered sex" view of the individual patient, is more open and inclusive, and allows for a precise and flexible approach which can avoid arbitrary definitions; this would enable underlying causes and secondary symptoms to be better described in a way that does not represent the patient as deficient or defective in some way.
Organisation Intersex International is the only international and multilingual intersex activist group, having members from around the world. In a recent internet survey we found that 90% of respondents disliked the term "disorder", many intersex people themselves preferred to retain the term "intersex", or use terms like "variation" and "VSD".
We support Eric Vilain in much of what he has said in your article, and welcome the way he has utilized so much of what intersex people have been saying to him over the past twenty years, but we cannot support the use of "disorder(s)" to refer to intersex. We have more detailed criticisms of the consensus statement itself, but there is insufficient space in a letter here. To date OII board-members have been denied any opportunity to discuss this international consensus with those who have formulated it; instead, intersex representation has been dominated by one advocacy group from the USA.
Regards,
Sophie Siedlberg, OII-Spokeswoman in the United Kingdom
Michelle O'Brien, Social Researcher
Curtis E. Hinkle, Founder of OII
For complete list of board members: Click here
Hi there,
While I do not have the pedigree that Geneticist Eric Vilain may have, I come to you today as an intersex individual that has been active in education about the conditions and syndromes that make up the numbers of those classified loosely as intersexed.
I applaud that article as an advancement in helping people understand what intersex is about. I do have a couple of comments. The first about the numbers quoted. He states that “Genital ambiguity occurs in an estimated one in 4,500 births” without reference. I have always seen this to be higher in the range of 1:2000, which is the number based in part on the diamond and Sigmundson research and ISNA and others are using. According to the latest numbers intersex conditions or syndromes, many not recognized as causing genital ambiguity, impact as many as 4:100; see Intersex and Identity, Preeves 2004.
Lastly I would like to speak about the term that seems to be everywhere these days, "Disorder of Sexual Development" or "DSD". As an intersex person I can say that we already have enough stigma out there about this without another label, especially one that begins with "disorder".
As indicated in Eric’s article “He watched as doctors at the Paris hospital would check an infant's endowment and quickly decide: boy or girl. Their own discomfort and social beliefs seemed to drive the choice, the young Vilain observed with shock. "I kept asking, How do you know?' " he recalls. After all, a baby's genitals might not match the reproductive organs inside.” He understands that there is no way of knowing what the child will grow up to be. Today doctors, family and social pressure continue to impose a subjective normalization on them where in its place an understanding of the diversity or variation of humanity is best. It is because of this ‘normalization’ pressure that un-consented neonate surgery is still performed today.
The term "Disorder of Sexual Development" may get the attention of the medical community, however at what cost if it continues to reinforce the mindset of subjective normalization without embracing the diversity of humanity.
Thank you for the article as it has helped broaden the knowledge base for many on this topic and I look forward to future educational articles on the same.
Dalelynn L. Sims
Virginia
Sirs,
I read the article "Going beyond X and Y", about Eric Vilain.
I do feel that most of the article has some profitable ideas - but also some really unfortunate mistakes.
In no way should "intersexed" be changed to something that is viewed as offensive against intersex people. What is very offensive to intersex people is the consequence of being considered a "disorder", The term DSD, "disorder of sexual development" is extremely offensive to most intersex people.
Along with Dr. Milton Diamond, MD,PhD, we agree the best "umbrella" term for intersex people is VSD - Variations of sex development.
That term, we aggree and most intersex people we have heard from, is not offensive and is more correct - because intersex is not NECESSARILY a disorder - but SURELY is a variation.
So, I agree that inside that VSD umbrella some life-threatening situations may be really classified as a disroder - but that should be the case only when we are presented with a life threatening one, not a socially threatening condition.
We need to fight to preserve life - when in danger. Social ideology and cultural ideology are something dynamic and always emergence is evolving.
So, intersex - and VSD are not as offensive to intersexed people. Vilain made a mistake - because DSD or disroder is the offensive term and concept - mainly based on an offensive ideological background.
Thank you,
Dr.Torres,MS,PhD
Gendercare Gender Clinic
OII-Organisation Intersex International - Porta-voz em Português.
HBIGDA/WPATH member
SCTPLS member
SBRASH member
Organisation Intersex International
