ISNA is hosting the First DSD Symposium

[prince....ss?]

“ISNA is hosting the First DSD Symposium, a gathering of intersex adults, parents, and allied healthcare professionals. This is your chance to meet and learn from others working to improve the quality of healthcare for families with children born with Disorders of Sex Development, and for adults dealing with the many ongoing healthcare concerns that result from DSDs.

The conference takes place in San Francisco, at the Parc 55 Hotel, Friday October 13 thru Sunday October 15.

The DSD Symposium is a mini-conference, held within the Gay and Lesbian Medical Association’s annual conference. Registrants to the GLMA conference are welcome to attend all DSD Symposium presentations. Those who are specifically interested in DSDs may register for the DSD Symposium only, at a reduced rate ($125 thru September 15; $150 afterward).”

Is anyone planning on going to this from BLO? Is this a type of thing that a novas person could get something out of? I just thought I’d pass on this email.

[Betsy]

No. In fact, the announcement I received made it look exceptionally boring. Most interestingly, it was the usual non-IS people talking about us rather than with us in dialogue. To my knowledge, there wasn't a single IS person on the schedule except perhaps Cheryl Chase.

[Peter]

Never fear, as your intrepid scout of intersex issues, I will gladly sit through possibly boring meetings to find out what all this new talk of Disorders of Sex Development really means. To make a long story short, I am signed up for the DSD Symposium. If there is anything worth reporting back to this forum, I will post something. But as Betsy already noted, there is a distinct shortage of intersex people on the schedule, so I am trying not to get my hopes up too high.

Peter

[sparklingdreams]

But I could never afford to,

And while I agree that it's sad, that there is a shortage of speakers who are known to actually live with any of the D.S.D. (Intersex conditions for those who prefer). The speaker are those that I would love to listen to. Many are on not only the edge of D.S.D. (Intersex conditions for those who prefer) treatment reform and research. I would love to see more people with one of the D.S.D. (Intersex conditions for those who prefer) speaking. But sadly I don't really see this as a problem of the symposium. How many researchers and/or medical professionals have one of the D.S.D. (Intersex conditions for those who prefer). Of course I can understand why we've avoided this field. Another, mostly just curious, question: how exactly do any of us know for sure that many more of these speakers, besides Cheryl Chase, do not have one of the D.S.D. (Intersex conditions for those who prefer)? Just because they are not 'Intersex' activists doesn't mean they aren't living with any of the D.S.D. (Intersex conditions for those who prefer). I'm not now, nor will I ever, live as an out Intersex person.

Because as I've said before (I can feel every ones' sighs) I don't carry Intersex as an identity. Even when I've spoke to Doctors or parents I only focus on the need of acceptance, and the needlessness of genital mutilations. I always simply explained I suffered from infant genital mutilation and the scars this left. I was always careful to leave Intersex and even my history of abuse out of any discussions, only because I found this the most effective way to calm parents, and help them understand that their children can live happy, well adjusted lives without any surgeries at birth, and that in fact that their children stood a better chance of this without surgical interventions at birth.

Of course as a big supporter of the D.S.D. (Intersex conditions for those who prefer) model of change, I'm not surprised I'm prolly way more interested in attending the symposium than most people here. I'm glad you'll be going Peter, at least I can get some of the information provided. Although I do hope the ISNA publishes the symposiums' minutes or even better would be a D.V.D..

[Fee]

Hello Everyone,

While I haven't been on here for some time, IS/DSD issues are never far from my mind. To update on stuff:

My daughter has definitely nothing wrong with her reproductive system with her ovaries and uterus clearly visualised by ultrasound. I have been told by the hospital that any other possible problems with her internal vaginal/mullerian structures won't be known until adolescence. She is now 8. She has, however, been diagnosed with a horseshoe kidney which I have been told is not a clinical reason for any of her urinary problems...If anyone has any more info on horseshoe kidneys I would greatly appreciate any help. She also has an abnormal calcium level.

My own stuff is progressing rapidly now. I am due to have another meeting with top doctors/clinical director at UCL in the very near future, during which I hope to have many of my questions regarding my current endo state answered, as well as answers to questions surrounding that 'botched Caesarean Section' 8 years ago. In my recent letter to the hospital I clearly ask about whether what happened could have been linked to a possible IS issue given what I experienced as well as the fact that I have so often been denied access to records etc. I also suggest future recommendations regarding support for the treatment of people who suspect they might have an IS/DSD condition. I have been asked to ring the PA to the clinical director this morning to arrange a date for the meeting....wish me luck! If anyone is interested in hearing more information about this, or who might wish to come along to a meetng with me, do please let me know. I expect that this meeting will only be the beginning....

Best wishes to all

Fee

[Sunshine1]

It seems very alienating and frightening because they have swept these conditions all together under one brush.

Would like to see a presentation on what to do for the CAH patient that comes into the Er.

I was a an Er and told the doc that I had been throwing up and then i asked him if he knew what CAH was and he stated yes which should of meant that hey CAH +throwing up? = possible adrenal crisis ...give solu medrol but nooo he went on to ask if I was having any genital problems.

So it is scary that they are doing this when Docs don't even know about the individual conditions.

I've had Docs confuse CAH with AIS also had a primary doc two years ago that wasn't even sure that females with CAH had periods.

I guess also that I really don't like that it seems they are trying to push how docs should act with patients that have any intersex medical condition and for me? I need the doc to be real ...even if they might say things the wrong way. Being sincere is so much better for my health care then some fake smile trying to follow what you think you should say because some P fucking H.d's say this is how you should deal with people that have conditions like this.

[neko2]

My daughter has definitely nothing wrong with her reproductive system with her ovaries and uterus clearly visualised by ultrasound. I have been told by the hospital that any other possible problems with her internal vaginal/mullerian structures won't be known until adolescence. She is now 8. She has, however, been diagnosed with a horseshoe kidney which I have been told is not a clinical reason for any of her urinary problems...If anyone has any more info on horseshoe kidneys I would greatly appreciate any help. She also has an abnormal calcium level.

From what I've read, horseshoe kidney itself isn't a problem, but it tends to occur along with some other things which are a problem. It's associated with Turner's syndrome (45,XO), trisomy 18, and some other chromosonal abnormalities.

Kidney abnormalities and calcium problems could be Williams Syndrome, maybe. The catch is that around 5% of the population has a mild form of this genetic disorder (inversion on chromosome 7) so it's only worth looking into if there is a clear pattern of symptoms.

Or maybe it's just a horseshoe kidney and there's nothing else wrong.

[Pamela]

I am going. I am trying my best to INVOLVE myself in any conference-symposium-group discussion to simply further educate myself. If we do not invole ourselves, we only have ourselves to blame for not being HEARD.

[Kailana]

:baring_te From what i've read on the new DSD standards, they mention more involved therapy with children with IS surgeries, and promote counselling to individuals, however all of there treatments still involve corrective surgery. reassigning, How are the children suppose to be able to be counselled too, if that is done when they are infants, how can they possibly be informed of what this will look like when they are older. I see this, these new standards as just being an attempt at placating older IS individuals, The surgeries are now being standardized just as they were before. No change is being promoted. Just more set standards for corrective surgery.:baring_te

I hope some of you are able to get a voice at the conference. its desparately needed.

Just my understanding of whats been proposed from the DSD standards and care for IS infants.

[fraulein_Maria]

however all of there treatments still involve corrective surgery. reassigning

>>> which would be fine if those surgeries were to fix something that was actually wrong, instead of an imagined "psycho-sexual emergency".

in other words, they are STILL recommending clitorectomies for INFANTS and castration for TEENS regardless of whether or not they are actually needed.

the ones who need counciling are not the kids.... its the parents... on why they cannot accept and love this special child.... and if they cannot learn to, it would be better for the child to be given to a couple (and Godde knows there are THOUSANDS) who would be delighted to accept the challenge.

the other group that needs "counciling" are the doctors who look at our bodies and our parents ins. policies, and see there next boat payment. <<<

I hope some of you are able to get a voice at the conference. its desparately needed.

>>> i agree. i'd love to go. but short of a loan of plane tickets, i won't be able to. pisses me off too. i got a check coming in dec. to cover everything, and then some. <<<

Just my understanding of whats been proposed from the DSD standards and care for IS infants.[/QUOTE]

[fraulein_Maria]

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BlogThis!Organisation Intersex International - USA

Friday, October 06, 2006
The DSD Chronicles

Download the Smoking Gun Documents: SMOKING GUN


The intersex community has been severely DUPED and manipulated. The reason there was practically NO intersex participation in this DSD scandal that has been ongoing for quite a while now was because they most likely did not want any participation from people who might figure out what was going on and who was involved.


1) J Michael Bailey is a central figure in the Network on Psychosexual Differentiation at Penn State which resurrected the Disorder terminology in a psychosexual context. He spoke on different occasions at their meetings specifically on intersex and helped formulate their mission which includes the following:

“Develop or refine animal paradigms that model and help to explain the genetic, neuroendocrine, and social processes underlying both normal sex-typed behaviors and pathological behaviors observed in individuals with intersex conditions or gender-atypical behavior.”

http://nichdnet.psych.psu.edu/aims.html
http://nichdnet.psych.psu.edu/members.html

2) Dreger and Chase then went about popularizing this terminology of disorders to the medical community outside the "psychology" and "psychiatric" community. We were told that medical doctors preferred the term "disorder". Well, they "prefer" it because that is what Dreger and Chase actually sold to them by publishing articles specifically on the reasons medical doctors should change to the term "disorder" as the preferred terminology long before most of us got wind of what they were doing.

3) Then Network members at Penn State and Northwestern "researchers" where Dreger and Bailey are located get all this funding that conflates the two issues - disorders of sex and disorders of psychosexual development.

4) Bailey is in BOTH groups and a CLOSE associate of Dreger and someone she has been defending.

DSD: The Scandal Exposed

1: The Consortium

DSD Consortium: Homophobia and transphobia exposed

2: Cheryl Chase and ISNA

Cheryl Chase and Disorders of Sex Development (DSD)

3: Alice Dreger

Alice Dreger: Disorders of Sex Development

DREGER IN DENIAL

Response from Michelle O'Brien to Dreger's e-mail sent to a few intersex activists

The Rhetorical castration of the Intersex community

4: Intersex activists start to revolt

IAIA’s home page

DSD - Is there really a consensus?

Three intersex activists defend children against pejorative terminology

5: About the Guidelines and the Handbook for Parents

Handbook for Parents is transphobic and homophobic



6: DSD: Commentary

Medical Fraud and Quckery

New Guidelines for Sex Development Disorders - Parody

7: DSD - Silencing Intersex Voices – International support letters:

Alice Dreger: DSD - Silencing intersex voices - United Kingdom


Alice Dreger: DSD - Silencing intersex voices - Canada


Alice Dreger: DSD - Silencing intersex voices - France/Belgium and Luxemburg


Alice Dreger: DSD - Silencing intersex voices - Switzerland



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Previous Posts
Resist – Refuse to be a victim
The Rhetorical castration of the Intersex community
Cheryl Chase and Disorders of Sex Development (DSD)
Alice Dreger: DSD - Update and response from the OII-UK
OII - USA: Intersex and proud of it!
DSD: Disorders of Sex Development (DSD's): Our view
Alice Dreger: DSD - Silencing intersex voices - United Kingdom
Alice Dreger: DSD - Silencing intersex voices - Canada
Alice Dreger: DSD - Silencing intersex voices - France/Belgium/Luxemburg
Alice Dreger: DSD - Silencing intersex voices - Switzerland


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[Meadow]

Fraulein,

I'm assuming that the entire post above was cut/pasted from elsewhere on the Internet. Does any of that rhetoric coincide with your opinions?? Just curious.

For the record: I have had a lot of correspondence with J Michael Bailey from Northwest and I feel that he is NOT homophobic nor transphobic. Persons from those communities may feel that he is because of research that he has published that may not be "popular". However, I feel it represents the TRVTH, unpopular as it may be. I just happen to be introspective and secure enough to accept it.

With regard to the other persons mentioned above, I have no first hand opinions.

Meadow

[Kailana]

Already new it. All you had to do was ready there new standards, They just proposed a more defined set of standards for cutting us up. Proposing councilling for intersexed patients, which we all know aint gonna happen. There still gonna keep our medical records from us and screw us over some more. Nothing builds hate better then Doctor's who have no compassion.

[Sara Zeal]

Michael Bailey wants to appear as gay and TG friendly, but have you read his 2003 book: The Man Who Would Be Queen?

It holds pretty homophobic and transphobic ideas, and he promotes Ray Blanchard's autogynephilia's work as actual science when it's, at best, a supposition. That because the methodology and instruments, and even interpretation of said researchs are flawed at their core. They had been disregarded as false in the past, but popularized by Anne Lawrence (since 1997), and Bailey with his 2003 book, it has drawn more attention - however it is not the truth, nor is it friendly to any gender-variant.

Being told that there's only two types of "male transsexuals" (their terminology):

-extreme effeminate gay men who would transition for social and sexual reasons
-men with a paraphilia being aroused by the image of one's self as a women (driven to transition by a mid-directed sex drive).

While there might be *some* TS who do fit this, Blanchard, Lawrence and Bailey make it as if those were the only possibilities.

Also Bailey works for the Human Biodiversity Institute, an organization that works to find the 'gay gene' to be able to screen births and choose a child's sexual orientation (or give the choice to abort if the fetus is genetically predisposed to be homosexual).

I don't know, but I haven't seen many pro-gays who would want to eradicate gays through selective abortion like him.

[Meadow]

As a matter of fact, I have read the book, and I know Anne. It was excerpts from that book, read before it was published, that gave clarity to this tormented soul.

Certainly most things in life are not a strict dichotomy. That fact is self evident here at BLO, where there is that grey area between male and female. And that is also most likely true with other examples such as gay/straight, and in the case of MtF transsexuals, gay/autogynophilic. Yet, in a large population, "most" examples can be put in generally one category or the other.

It seems most people do not like "categories". Yet, how can one further scientific understanding of a subject without first looking at some data? A bit closer to home, "most" XY persons born AIS will identify as female. Yet, there are exceptions, and those individual persons should be treated with understanding.

I am very knowledgable with regard to the entire controversy surrounding this issue. But what has happened when some very outspoken critics have done nothing but cloud this issue is that it has pushed back understanding about 20 years. Once again, as it has been in the past, transsexuals are having to lie to their therapists about their motives and "reinvent their past" to fit what is expected. It is bad enough that conservatism has swept across this country. But now it has even crept into a community that I never would have thought possible.

Like any scientist, I can change my mind with updated, credible, and published literature. Bring forth an actual published paper stating a differing opinion, and I'll take it under consideration.

Rather than to let this thread drift off target by bringing in TS issues, I would rather refocus on retrospective studies of the outcomes of persons born Intersex or DSD. It is imperative that if change is expected that persons make their stories known and how their treatment as infants and children has affected their lives. Because if persons are not willing to stand up, those who most need to hear your voices will simply never know and keep on doing the same as before.

Meadow

[fraulein_Maria]

[QUOTE=Meadow;12031]Fraulein,

I'm assuming that the entire post above was cut/pasted from elsewhere on the Internet.

>>> yes it was. i'm not the censorious type. I believe that opinions should stand or fall on there own merits or deficeits without doing someone else's thinking for them. I be just a reporter here. Not everyone is blessed with broad band, and this might be there only source of info. <<<

Does any of that rhetoric coincide with your opinions??

I must admit that i have not taken the time to read the document that everyone is up in arms about, but my opinion on the subject of being labeled disordered can be found in other threads and i shan't bore anyone repeating them. I will add to that opinion however, that i'm extremely distrustful of my profession's tendency to pathologize the perfectly normal....
I've got a new client who supposedly has an obsession.... i'd call it an intensely enjoyed hobby.

i have been having some personal difficulties of late, in addition to some long sought changes in employment and residence. Throw weening down on pred. into the mix, and i'm just a mess. I should be back to myself in a couple of weeks, after the bills are paid in full. i've scheduled some much deserved vacation time in Jan, and was hoping to go someplace... WARM ;) this tropical gal is freezing her buns off. Thought about visiting my cousins in ANAHEIM, CA. but maybe i'll just crash my marine corp bro in NC.

[Sara Zeal]

"That fact is self evident here at BLO, where there is that grey area between male and female. And that is also most likely true with other examples such as gay/straight, and in the case of MtF transsexuals, gay/autogynophilic."

Hmm the thing is, most aren't either of them. Neither gay men or autogynephilic. There might be more than accounted for, but, it's insane to assume everyone fits your model because it's absolute. It's not a male/female or gay/straight model, this is a mode that assumes being transsexual *has* to be a model of "sexual deviance" (and yes homosexuality is characterized, by Bailey, as "a mistake of evolution").

Bailey isn't so bad about gay men themselves than he is about saying all MtFs that transition young are gay men who couldn't find sexual release and transitioned to find sex partners.

Anyway, I agree this is somewhat off-topic, I've just heard lots of Blanchard/Lawrence/Bailey controversy to have my fill.

Just recently, I heard that OII president has put a petition to have APA division 44 remove Lawrence and Zucker from their panel.

I also agree that mis-treatment by doctors, for children as well as for adults, should be denounced in order for it to be changed for the better. Doctors tend to want to hide things to 'prevent psychological harm', and by doing so, do just that; cause psychological harm, by withholding very valuable information from the concerned persons, and sometimes their relatives as well. The situation has not changed much, although there's more conscientisation, most people don't know what to do, how to react, and what to say to their patients.

[sparklingdreams]

No change is being promoted. Just more set standards for corrective surgery

The new D.S.D. guidelines & standards,

Promote major changes from the currently accepted medical practices. Surgeries are not encouraged. In fact the D.S.D. guidelines include no infant surgeries. The guidelines do include the option for surgeries but only once the person can consent to it. Which means some may not ever chose to have any surgeries, although most people with any of the D.S.D. will chose corrective surgery, and either path should be allowed.

Any one who feels that the D.S.D. model is no different than the current medical model has simply not taken the time to read the actual guidelines, and based their beliefs more on hear say than any truth.

Anyone interested, and open minded enough, should read the clinical guidelines so far at http://www.dsdguidelines.org/htdocs/clinical/index.html. And keep in mind that one of the things the symposium is focusing on doing is letting medical professionals and those living with any of the D.S.D. to continue to develop the new guidelines.

If you feel you're views aren't being reflected there are portions of the symposium focusing on that specifically, including the Friday's "Conceptualizing Competent Care for Intersex Adults", which will include audience participation. Everyone has a chance to have input on the future of care & treatment of people born & living with any of the D.S.D.. But you half to be calm, collected, and realize that there i never going to be just one way to treat all cases of D.S.D., nor can every possibility be planned for. But just posting one's feelings online isn't going to get your voice heard.

And of course keep in mind that most people born with any of the D.S.D. do identify as either female or male. So naturally any future treatment changes are going to reflect that.

[sparklingdreams]

it's insane to assume everyone fits your model because it's absolute.

But instead simply categorized,

And it needs to be. All science, medical and other wise, has to start with a point of reference. Other wise nothing would ever be studied. Everything has to start some where, even if it's completely wrong.

Science does not include absolutes, but current understands, theories, and observations. So whether or not you share Dr. Bailey's theories, they have to be taken into consideration as part of a whole... but not the whole its self. Simply ignoring any theory or observation for emotional reasons doesn't move things forward, it instead either keeps things stagnate or, and far more often, set activism backwards.

If one is looking for answers to bigger questions about D.S.D. (back on topic) all opinions must be looked at and most importantly one has to realize all changes start from somewhere. And if all one can do is yell and scream about where we are, than we'll never get anywhere. Luckily the anger shown here toward the new D.S.D. guidelines seem to be the exception, the majority just don't post here (which I understand why).

With all the things being said against and in attack of the new D.S.D. model, it appears most have not bothered to actually read the D.S.D. Guidelines (http://www.dsdguidelines.org/), but have based their reactions on what they've heard others say. Are the new guidelines perfect, no, and they never could be. But anyone who says that the new (and keep in mind working guidelines) are not an improvement over the majority of currently practiced treatments of those born and living with any of the D.S.D. clearly hasn't even spent the time to research the new guidelines.

[Kailana]

Katie, i love many of your posts. But in the treatment for people born like me, the reccomendations were surgery, and assignment. Now our conditions may very, and what is reccommended for some seem like improvements, For mine, in the DSD, Recommendations are surgery, removal of, so that only one type of gonad is present. Its still forcing a gender on someone before they are allowed to express themselves. Why i Do not agree with the new standards. You keep using the "Disorder" part of the DSD, abbreviation. I am not, nor do i have, a disorder, I am a True Hermaphrodite. That is what i am suppose to be. The trauma I have experienced is no greater, nor nor weaker then any others. It is however mine. My knowledge from time to time may be flawed, as I tend to rely on what i can read, and i tend to read alot, Not from what is posted in all the Medical encyclopedias. I Read actually studies, I read real case reports. I do not keep on repeating what the medical community says should be done. I read what has been done, why it was done, and the benefits of what is expected to be done.

There is very little change proposed in the new DSD.

Gender can not / should not / be taken away from anyone. I dont care what the condition is. Or how there anatomy is developed. Gender and how one expresses it should be left to the individual, not what someone else says it should be. That is the only reason why I disagree with you, and your interpretation of the DSD standards.

[sparklingdreams]

There is a good reason,

Removal of certain gonad tissue is recommended in the case of ovotestes is because of the extremely increased risk of the tissues becoming cancerous. I'm sure you know why this occurs, so I'm not going to insult your intelligence by explaining why. And for the record the D.S.D. model does not recommend the removal of ovotestes (see http://www.dsdguidelines.org/htdocs/parents/answers.html). The new standards on ovotestes are very complicated and elaborate, but if any portion even comes close to recommending surgery it would be the following quote from the Parental Guidelines (http://http://www.dsdguidelines.org/htdocs/parents/):

If a gonad is cancerous, or has a high chance of becoming cancerous very soon, obviously you will want to consult a surgeon about having the gonads removed. The risk of cancer is different for different kinds of D.S.D.s.

I can't imagine one rational way someone could disagree with that. As for when gonads, even ovotestes, don't present an immediate risk of cancer the guidelines clearly stand against having the tissues removed. So if your ovotestes where not cancerous, under the new D.S.D. model would result in you still having your gonadal tissue. So even in your case the D.S.D. model reflects major changes.

There is very little change proposed in the new DSD.

And that is just wrong, there are major changes from what the N.I.H. currently recommends as treatment for children born with any one of the D.S.D..

Lastly, I'm not sure how you see me focusing on the disorder portion of the new models name. Except that by very definition D.S.D. are disorders. But that's another thread all together.

[Peter]

At the last minute, I was invited to be on a panel discussion of the DSD nomenclature of the first DSD Symposium. It was a great weekend, and I was able to meet many beautiful intersex people. I have been asked to post my remarks from the panel, so here they are.

I Am Neither “Pseudo” nor “Disordered”

My name is Peter Trinkl, and I am the Board President of Bodies Like Ours, an intersex educational and peer support organization. We have an active on-line support forum for intersex people and people seeking information about intersex issues. Our Executive Director, Betsy Driver, is not here today, but many of you are aware of her intersex work.

The term “hermaphrodite” goes back to ancient times to describe a person who is sexually seen as being both male and female. With the rise of the medical study of intersex conditions, there arose what the historian Alice Dreger has called the Age of Gonads, roughly dating from the end of the nineteenth century to the early twentieth century. During this time, it was thought that the true nature of a person’s sex could be determined by studying gonadal tissue. Ovarian tissue with associated with being female. Testicular tissue was associated with being male. The presence of both ovarian and testicular tissues in various configurations was a sign of a being a true hermaphrodite. This gave rise to the notion that there were three types of hermaphrodites: “true hermaphrodites”, “female pseudo- hermaphrodites”, and “male pseudo-hermaphrodites”. In the 1920’s, the term “intersex” arose partly in response to problems of sex and gender that were not addressed by the traditional hermaphrodite nomenclature. But the idea that there are three types of hermaphrodites has had a surprisingly long life, and can still be found in many current reference materials.

In a recent article, entitled “Nomenclature/Taxomomy for Intersex: A scientific and Clinical Rationale” published in the JPEM, ISNA staff members and members of the ISNA Medical Advisory Board recommended that the term “hermaphrodite” and the associated terms of “Pseudo-hermaphrodite” and “True-hermaphrodite” not be used in future medical literature. I also recommend that the term “hermaphrodite” not be used in a medical context.

I quote from the ISNA website “The authors end by suggesting that it would be better to use specific etiology-based diagnosis (like AIS, 5-alpha reductase deficiency, etc.) along with an umbrella term. Which umbrella term? In our travels in the last few months, we notice there seems to be an emerging consensus around using disorders of sex development, abbreviated DSD’s This seems to be a term that doctors and many patient advocates can agree encompasses all of the conditions we at ISNA have traditionally labeled intersex”. (Note: You can visit the ISNA website for more information.)

One group of people that was not widely consulted on the proposed usage of the DSD nomenclature was the intersex community itself. The proposed use of the term “disorders of sex development” hit a raw nerve in the intersex community and continues to be a painful issue. Condition specific support groups have received many complaints from their membership about the DSD nomenclature. For example, Esther Morris Leiholf, President and founder of MRKH org., and Sherri Groveman Morris, founder of the United States branch of the Androgen Insensitivity Syndrome Support Group, report receiving numerous complaints about the DSD nomenclature. They both oppose the DSD nomenclature.

The Organization Intersex International, led by Curtis Hinkle, has been very vocal in its opposition to the use of the term Disorders of Sex Development. In their analysis of the DSD nomenclature, they focus on what OII sees as the homo-phobic and trans-phobic nature of the DSD nomenclature. You can visit the OII website for more information.

I am opposed to labeling intersex bodies as “disordered”. I believe that the nomenclature “Disorders of Sex Development” further stigmatizes and pathologizes our lives. The DSD nomenclature strongly suggests that the ends of sexual development are either a normal female body or a normal male body. It ignores the vast diversity of the biological world as documented by Stanford biologist Joan Roughgarden in her book “Evolution’s Rainbow”. I find it interesting, that whereas both the hermaphrodite nomenclature and the intersex nomenclature implicitly accepted biological diversity, the DSD nomenclature is the least accepting of biological diversity. I believe that any move to have the DSD nomenclature officially recognized within the medical community would be wrong.

Where do we go from here? I hope that open discussion of the issues raised by the controversy over the DSD nomenclature will continue. The move to adopt DSD nomenclature has caused much pain in the intersex community. As the DSD nomenclature is hurtful to many intersex people, I believe that it would be a healing move not to use the DSD nomenclature.

Peter Trinkl

[fraulein_Maria]

Thank you Peter for representing us. You can say CAH is an inherited disorder of my adrenal glands.... it is NOT a disorder of sexual development. Does it affect that development? undoubtedly, yes.
but can it really be considered a DSD when my gender is unequivocally female, and fertile at that?

I am not less female because my external genitalia is ambiguous.

AIS'ers are not less female because they are missing internal female structures.

NONE of us is something "less" because of our conditions... an objective analysis reveals rather, that we are something more.

We are not ordinary. We are EXTRAordinary.

Just as Genious is not "normal" , not ordinary, not disordered... so too are we.

[Kailana]

Peter, that was a great statement? i might of come up with a better argument, then just complaining if i were more involved. As im not really, that out spoken, I'll just add a little more to what i think is wrong with the new DSD standards.

1. This is the most important. Why isn't there any provisions in there proposed counseling standards, for us older IS people. Why aren't they telling Doctor's/Surgeons too open up all of our medical records. Theres so much trauma, that many of us have had to deal with, all because some Doctor decided we were better off not knowing.

2. Where is the reccomendation to fix what Doctors have allready done to us. Why do i keep hearing that if you were an infant we could do this, but because your an adult, Now your transgendered and need Doctors letters to/ for surgery.

3. Same line as above. Birth certificates, There should be a unanimous agreement on changing ones gender on birth certificates, because most of the States now treat us like crap. You have to be pretty lucky when changing gender, but this is what you are, and everybody else says, well your birthcertificate says male, so your male.

Thats just a few issues, that i think should of been raised in the DSD. And i didn't see it. Had to go threw the Handbook for Parents to here about treatment on IS patient who is incorrectly forced into a gender, that doesn't fit. That really needed to be in the DSD.

[Meadow]

It seems that I recall someone suggesting that rather than DSD, an umbrella term might better be stated as VSD or Variations of Sexual Development. This would remove the term "disordered" that seems to imply a level of pathology? Just a question.

Further, I feel its important to remember that any terminology used is just an umbrella, underwhich there are many distinct differences, such as CAH, AIS, and many others, each having a very different need, and each being treated as individuals.

I dunno. Does not "Variations of Sexual Development" make sense? And if not, why not?

Meadow

[Kailana]

Such simple words.

Might of been mine a few weeks ago. As i seem to be having some memory problems , i wont claim them as mine. And yes i think Variations of Sexual Development would work a great deal better. There would be less confrontation over the terminology.

[Meadow]

Thank you for your comment. Perhaps someone might pass this note over to the folks duking it out on the General CAH Forum! Sure has gotten hot over there!

Meadow

[Kailana]

i'll blame that on my memory problems too. i seem to be a little testy these days. maybe its just hormones playing with my stability. Guess, i'll have to go visit the CAH forum. Why does it sound as if im so raging mad all of a sudden?

Sorry all i'm really quite nice.

[prince....ss?]

Are you serious?

V.S.D sounds like a sexually transmitted disease.

Would a condom protect you from contracting this dreadful V.S.D? :rolleye11

[Kailana]

I think it would sound a great deal better then using the word Disorder. its not much of a change. But i really cant get the word Disorder out of my head.
It bothers me alot. It's as if i'm nothing but a disease, and i know i am a great deal more then that.

[Meadow]

Ha! Very Funny Prince....ss?! But I see that you have no arms!

Seriously, you do have a point. Perhaps that same intent can be conveyed without that particular set of letters.

Meadow

[Peter]

Thanks Maria for saying that we are EXTRAordinary! That made my day. We live in a world where some people believe that having a body that is not what is considered normal is to have a deficiency, disorder, lack, or sin. I am very tired of this. I have been reading your posts, and hopefully if we can make some progress here in California on getting hospitals to form intersex task forces, like UCSF, I believe that you would be a wonderful person to advise hospitals.

On the subject of "variations of sex development" - I am against the VSD terminology. I understand the reasons that some people want to use VSD in place of DSD. But, as an intersex friend told me the other day, everyone has a VSD, and so I might add that it is the "night in which all cows are black". The person most associated with the VSD nomenclature is Dr. Milton Diamond. I got a chance to meet him recently, and he seems like a wonderful person, even if we disagree over nomenclature. I do not like either DSD or VSD, and wish that the whole move to replace intersex with another term had never gotten so far. I am not crazy about the intersex nomenclature, but until something truly better comes along, it will continue to be my preferred term.

Peter

p.s. It seems that getting a diagnosis of VSD would be the same as getting a diagnosis of "human" because both include everybody.

[Sunshine1]

Congenital Adrenal Hyperplasia is a disorder/condition of the Adrenal Gland=

Congenital Adrenal Hyperplasia is a disorder/condition of the Endocrine system as is my thyroid condition Hashimoto's thyroiditis. Other people have disorders/conditions of other body systems.

I'm not a disodered person as my endocrine system doesn't define me.

[Meadow]

"It seems that getting a diagnosis of VSD would be the same as getting a diagnosis of "human" because both include everybody."

Peter, but isn't that what is desired, that persons be viewed as human?

The sense that I get from listening is that on one hand, terms such as "disorder" are too harsh, stigmatizing, and marginalizing. But I take it from your point of view that a term such as "variations" is too broad and soft. So it seems that what might be needed is somewhere between the two. "Intersex" implies somewhere between the two sexes. Perhaps the best solution is to consult a dictionary to find just the right term that best states that a person is born having characteristics that might fall outside the realm of "normal" (whatever that means), but also may not necessarily be something that would require immediate or any medical intervention.

BLO represents the grass roots for change. If something other than Intersex as the umbrella term is desired, here is the place for persons to express what they themselves desire and not leave change, if at all, left to just a few.

Respectfully, Meadow

[miriam]

If something other than Intersex as the umbrella term is desired, here is the place for persons to express what they themselves desire and not leave change, if at all, left to just a few.

Hey Meadow! The word "if" is important. That's the part of the question we have to answer in the first place.

Groeten, Miriam

[Meadow]

Miriam,

I agree. Two thoughts: The First "If it ain't broke, don't fix it" philosophy certainly remains valid. If Intersex is working, by all means keep it. On the other hand, Thought Two: Its never wrong to look at any subject in the expanse of knowledge that will either replace that subject with new information, or reaffirm that what was true before remains true. So yes, there remains an IF there are any changes.

Miriam, you know I don't have a personal dog in this fight other than having a very close friend along with an interest in the subject of gender no matter what the etiology. Sometimes the observations of an impartial third party is not a bad thing, but in the end, I realize that my opinions mean very little.

All the Best,

Meadow

[Glenn]

My two farthings:
I really hate the term DSD. Disorder equals defective, and that's no way to look at yourself. Unless there's a "cure" for DSD (cue X3 movie), it's offensive, and it rankles my hide.
Meadow, I love the concept behind VSD, though I agree the acronym is unfortunate. :rolleye13
Great point, sunshine1 - there's much more to us than the parts that don't match Grey's Anatomy!
And Peter, THANK YOU for representing us so eloquently. :ARMS1:

[fraulein_Maria]

[QUOTE=Peter;12102]Thanks Maria for saying that we are EXTRAordinary! That made my day. We live in a world where some people believe that having a body that is not what is considered normal is to have a deficiency, disorder, lack, or sin.


>>> the average female begins to mentruate at 13. But it is perfectly "normal" for her to do so as early as 9 (though i imagine that un-dx'ed CAH'ers skew that ;) and as late as 19. likewise, 100 is an average IQ... not a "normal" one.

We exist as normal on a similar continuum. genital hyperplasia is the NORMAL result of cortisol deficiency.
similarly, missing a uterous is the NORMAL result of androgen insensitivity.

In other words, our bodies are responding ( SUCCESSFULLY) to a challenge to our existence that preserves our lives and brings us to an adulthood FREE of DISABILITY (unless you consider infertility a disability).

This is NOT TRUE of..... Cancer, Manic-Depression, Tuberculosis, Trisomy 21 (down's syndrome) which are (untreated) examples of respectively...

A fatal failure of the immune system to eliminate abnormal cells. A "deficiency"

A disabling mental condition. A "disorder"

A fatal infection of a bacterium. A "disease"

A fatal genetic defect. A "defect"

You can get on social security disability for having any of these.

Notice: Disorder usually (but not always) refers to a MENTAL problem in medical language, and as such, has me perhaps the most furious.

It is no great tragedy to be as we are!!!

This does not deny our pain (most of it inflicted by the doctors, parents and a society trying to fix what is not broken) or our needs ( like pregnant women, we need medical care for what is a natural and normal part of existence for us... but no one considers pregnancy "disordered".)

We existed in an age before "safe" surgery was an option, as contributing members of whatever society we found ourselves in.... As Shaman's, Preists, Nuns, Scholars, Beloved Husbands and Wives, and Adoptive parents of our fertile (but deceased) siblings' children.

It is only our "modern" sex obsessed age that has had a problem with us.

And it truely is THERE problem.... not ours. <<<

I have been reading your posts, and hopefully if we can make some progress here in California on getting hospitals to form intersex task forces, like UCSF, I believe that you would be a wonderful person to advise hospitals.

>>>Thank you. i appreciate your vote of confidence. i will be free of ALL debt in the coming year and hope to return to school to finally finish my degree... And then i'll just walk into Mary Immaculate Hospital like i own the joint and casually ask to see the records of "Maria T. Krasinski" Neonate, 1965. I wouldn't mind at all advising Dartmouth. There are pleanty of people available to advise the Big metro hospitals, my heart goes out to the little ones were many of us are born.... it would be best if we could nip this nonsense in the bud. <<<

On the subject of "variations of sex development" - I am against the VSD terminology.

I still like mine. Atypical Gender Developement.

"Atypical" suggests out of the ordinary, not necessarily abnormal.... though abnormality is covered also... a good "umbrella" term.

"Gender" our ability to have sex is UN-IMPAIRED with a little creativity, so what is really the issue? Its the fact that those priveleged to see us nude can't tell what we are. My response? Tough shit. YOUR problem, not mine.

"Developement" is the only word that fits. <<<

[Peter]

.
Meadow, I love the concept behind VSD, though I agree the acronym is unfortunate. :rolleye13


Glenn, on VSD nomenclature, I have done an informal survey among non-intersex people, and they tend to laugh and roll their eyes upon hearing the term VSD, as the term VSD reminds them of VD. Also, VSD refers to everyone, which is not a bad thing in a general humanistic way, but I feel that it is not very descriptive in a diagnostic sense. At least the terms hermaphrodite and intersex are about something. I like the general intention behind the VSD proposal, but I still think that a good term has not yet been found. As I have not been able to come up with a term that is better than intersex, I favor the old intersex nomenclature.

Meadow, with your medical background, I highly value your input into the VSD debate. I would like to know more about precisely how VSD would be used in a medical setting. If you detect a certain brittleness in my discussion of nomenclature, it is nothing personal, but rather reflects the fact that the time and energy of so many people now has to be directed into the DSD nomenclature debate, a debate that I believe has the power to set back the intersex community by many years. Personally, I don't have much energy for this debate, but I love to read the much needed comments of others on nomenclature.

Peter

[miriam]

Sometimes the observations of an impartial third party is not a bad thing, but in the end, I realize that my opinions mean very little.

IF (hey, there is that word again ;) ) your opinion would mean very little, it would not mean that your opinions are worthless :thumbs_up

groeten, Miriam

[Meadow]

Peter, I have seen the results of communities being set back by many years, so I agree that any steps or changes must be made only after careful consideration.

When I look at the issue of describing various conditions, no matter what they are, there seem to be two different levels. Lets look, for example, at the umbrella term "cancer". Now to me, that word by itself is not really very descriptive, because there is a long way from a benign lipoma, something that would never need to be treated, clear up to an osteosarcoma which we will just state is very very bad. One is nothing like the other and treatment is totally different. Even within the realm of melanomas, most I have seen are small and take years to grow, but I had one occurance that was highly undifferentiated and malignant and killed the patient within months. So, there are so many different cancers that the term is a catch all for any type of abnormal cell growth.

This viewpoint can also be applied to intersex. There is no one term that can adequately describe all the different conditions. So why have an umbrella term at all? Well, like the word cancer, it is something that many can get an initial grasp and understanding. Most persons I encounter have no idea on all of the variations and clinical significance of various cancers. But you mention the big "C", and yes, they get it!

Another reason for using an umbrella term, other than giving a general idea to the uninitiated, is that there is power in numbers. The American Cancer Society represents many. However, certain specific cancers may be rare, but they still have this larger voice in their corner. Further, by having many cancer specialists getting together at larger conventions, they can learn from one another with regard to some treatment specifics. The same can be set for Intersex. Even though many of the conditions are totally different, there are some issues that overlap where there can be an exchange of ideas. One does not get that by being ONLY with others exactly like themselves. I certainly have learned a lot in the last couple of years by being here!

So, to answer your question Peter, I don't see where an umbrella term would necessarily be used in a clinical setting, other than as an initial talking point. Doctors don't enter the word cancer by itself on a chart. But as far as more specific diagnoses, things that would be entered on a chart, these may already be covered, such as AIS, CAH, and male pseudo-hermaphrodite to name a few.

As far as the word Intersex, like the word Cancer, it is general in nature, it is short and easy to remember, and many people can remember it. So, even though I did not intend to take a side in the debate, by thinking about it in this post, I may have come to my own conclusion.

Things to ponder today . . .

Meadow