DSD / Intersex labeling - Discussion

[miriam]

ISNA and other people who try to bring us under the "disorder" umbrella, say that this word is more acceptable for parents.

Any parent who reads the first question on the backside of USA Department of Homeland Security form I-94W (the so called "I-94W Nonimmigrant Visa Waiver Arrival/Departure Form") will understand that diagnosing a child with a disorder will do harm to their child:

A. Do you have a communicable disease; physical or mental disorder; or are you a drug abuser or addict?

If you say YES, you'll have to contact the American embassy BEFORE you travel to the U.S. since you may be refused admission into the United States.

If you say NO, you are lying. And you better don't lie in this case.

Anyone still thinking disorder is a better word than intersex? Yes? In that case you probably have a mental disorder (check YES and keep on dreaming).

Groeten, Miriam

[Peter]

Thanks Miriam for documenting a concrete example of a civil rights setback that stems from the DSD (Disorders of Sex Development) terminology. In the past, heartbreaking examples of not being able to travel because of differences between birth certificate sex and current sex have been documented on this site. Now, because of DSD, these problems will potentially be extended to all intersex children. One thing that I really dislike is that the DSD terminology was put forward without much thought about it. I believe that there should have been a committee formed to study the issue with input from a wide range of intersex groups and individuals. Then, this committee should have formed a sub-committee to study the legal and civil rights implications of the proposed change from intersex to DSD. That this was not done indicates a deep ethical sloppiness about this whole business. My main hope at this point, is that there are still doctors, lawyers and educators, as well as intersex people and our parents, who in light of the socially and legally repressive aspects of the DSD terminology will work to prevent its widespread adoption. I am really thankful to those doctors, who at the beginning of the twentieth century, originally came up with the term "intersex" for choosing a term that can be read in a non-disordered fashion.

Peter

[Sunshine1]

Would you all go for errors of sex development? I think that is what John Hopkins always used.

A. do you have a communicable disease?

80% of the sexually active public has HPV at one time or another and most people that don't have immune issues never have trouble with it. The rest of us suckers get some form of cervical cancer.

90% of the public has herpes 1 virus even though not really considered sexually passed but it still is a communicable disease. It can put you in the hospital if it affects other organs.

This one is good ..yeah 1 in 4 people have herpes 2 BUT only 1 in 60 actually know they carry the virus.

Have a physical or mental disorder?

I have two endocrine disorders - One is very comon and many people have it which is hashimoto's thyroiditis and I have an adrenal gland condiiton. i don't have a very orderly endocrine system and if any far of country could suggest a good hospital for Westerners on vacation then thank you. I was looking into going to Korea and did take note of the hospital that was suggested.

I don't have a mental disorder but do know some people that do and they are fine on their meds but if by chance they got lost, sick on some country road in IRELAND? it would give me piece of mind that if something happens then the embassy does know who the heck they are.

People can die from adrenal crisis.


The medical term intersex was a good description of what externally my genitals looked like but it isn't a description of all with CAH.


Drug abuser or Addict.

Nope.


Aren't there other conditions that go under disorder as well?

like heart disorder.

[turtledove]

"To remove this ‘disorder’ label would provide a convenient and ready excuse for insurance providers to NOT cover these surgeries, thus reducing/eliminating the profits of a number of pediatric urologists, anesthetheologists, and the like."

-many parents would want the surgeries and probably fight for insurance to continue to pay for them.


"I do feel that the move to further delineate and define the parameters by which legitimate ‘Informed Consent’ can be given, will play an important and integral part of the actions necessary to remove or reduce the instances of IGM here in the US."

-similar to how US Senators bumble about the definitions of torture while the US is engaged in torture?


"But intersex conditions are not the kind of disorders that you normally see in the medical profession. We have no pain, it will not kill us and nobody can cure us."

-hormones or lack of them can cause real pain and clearly visible symptoms. So some 'intersex conditions' have symptoms exactly like 'normal' endocrine diseases. If one's body isn't killed by endocrine problems it can be killed by suicide. What is normally seen in the medical profession? What can doctors cure? Medicine isn't magic.


"I have to wonder WHY do we need these 'monikers' in the First place! Why not just determine, assign, and stick to the specific condition(s) or syndrome(s) an individual has, rather than have these stigmatizing umbrella terms to confuse and obfuscate the situation for everyone, including Intersexed"

-because medicine is about memorizing lots of info and umbrella terms make memorizing easier.I don't see how Intersexed was an umbrella term. I thought it had a specific purpose of making it clear that some people are neither male nor female.

"I will suggest these efforts [to classify] are in place to keep US 'off balance', and distract us"

-Sure some doctors have an agenda to protect their sexuality or religion.So they will use propaganda. But I think the main motive for most doctors is to preserve their egos. In otherwords they wont admit they made mistakes or are ignorant. They see us as inferior. They can't stand that that some 'tards' will question their authority.

"[Obfuscation] all in an effort to force us to overlook the core issues of mutilation, secrecy and shame".

-Secrecy and shame can be solved through good forums. I don't know how to stop mutilation.


"ISNA and other people who try to bring us under the "disorder" umbrella, say that this word is more acceptable for parents"

-It's more acceptable to parents who belive in Adam and Eve

"Any parent who reads the first question on the backside of USA Department of Homeland Security form...will understand that diagnosing a child with a disorder will do harm to their child"

-LOL Beaurocracy, lol DHS.

"Anyone still thinking disorder is a better word than intersex? Yes? In that case you probably have a mental disorder (check YES and keep on dreaming)"

-Really bad discrimination happens to people who get 'diagnosed' with mental disorders. The mental health system is a great way to further stigmatize intersexed people.

"One thing that I really dislike is that the DSD terminology was put forward without much thought about it. I believe that there should have been a committee formed to study the issue with input from a wide range of intersex groups and individuals."

heh


We all need to collect a lot of data and make a lot of friends. If only there was some trustworthy place.
TurtleDove

[mohnblume]

Maybe a stupid question: Does anybody know a VIP person, who could support us? Madonna, Rosie, or whatever famous person could be on our side and speak for us? We need a name, who is promoting us ... that is not ISNA, that is a person who is loved by the public and gets full attention.

It's outraging that we re going/kreeping that suffering way. We should be proud of our body. The body God gave to us, and not to parents, physisists and lawyers!

[turtledove]

"Does anybody know a VIP person...who can support us."
There are plenty of famous androgynous people. en.wikipedia.org/wiki/Androgyne



"We should be proud of our body. The body God gave to us."
Pride in your body doesn't stop severe discrimination, cure medical problems or prevent medical malpractice.Many people assume intersexed people hate themselves.

[mohnblume]

There are plenty of famous androgynous people. en.wikipedia.org/wiki/Androgyne


Hmmmm... Michel Jackso is an intersexual?????????

[Wyn]

I guess I'd like to put forward some thoughts on a few of the replys posted.

First, in regards to turtledove's comments.

I do think that 'picking and choosing' various points of previous posts, and then making negative commentary on them truly does little to enlighten or further the discourse. To me, it seems to simply berate or negate these particular snippets, without understanding the full context in which they were written. Fortunately, these items are located in this thread, such that interested parties can see these items in their full context. It would certainly be better to make some of your own observations or talking points, and then offer some solutions to any problems that you see, rather than just tear apart and leave in a dishelveled heap that which has come before.

In terms of mohnblume's somewhat humorous tongue-in-cheek suggestions;
heres the term from the Merriam-Webster Online Dictionary;

androgyne
One entry found for androgyne.
Main Entry: an•dro•gyne
Pronunciation: 'an-dr&-"jIn
Function: noun
Etymology: Middle English androgine, from Latin androgynus
: one that is androgynous
------------------------------------------------
One entry found for androgynous.
Main Entry: an•drog•y•nous
Pronunciation: an-'drä-j&-n&s
Function: adjective
Etymology: Latin androgynus hermaphrodite, from Greek androgynos, from andr- + gynE woman -- more at QUEEN
1 : having the characteristics or nature of both male and female
2 a : neither specifically feminine nor masculine <the androgynous pronoun them> b : suitable to or for either sex <androgynous clothing>
3 : having traditional male and female roles obscured or reversed <an androgynous marriage>
------------------------------------------------------------------
I would suggest that Michael Jackson fits entry #2 and, possibly, #3...however, the connotation that he's Intersex is not there, and, while - if asked - he may Wish to be Intersex, he probably is Not.

Personally, I would venture a VERY strong guess he Isn't - in fact I remember when this young man - not so young anymore - first started out with the Jackson 5 - he was a cute little boy with a gift for singing and theatrical dancing that had been drilled into him from a very early age. Probably Why he is so messed up now.

All this said, I'm not so sure that 'getting a celebrity' would necessarily be in the IS community's best interest, given that we may end up with someone who does NOT have either a 'good' reputation (or loses it in a drugged or drunken state), nor may have our best interests in mind. I seriously doubt that we could 'choose' any particular 'celebrity' to represent 'us' ... these people live for the income from such endorsements - I know I do NOT have the 'deep pockets' that would be required.

Moreover, I KNOW that I would NOT want any of the individuals that currently Have or seek 'Celebrity' to be a spokesperson for ME - in Any way. I feel that any of us could speak far more eloquently, and with a personal Passion in such a way that None of these so-called 'celebrities' could.

If you want My vote regarding a spokesperson, I would whole-heartedly suggest either our own Betsy, or ISNA's Cheryl Chase. Both have a vast store of knowledge and personal experience, and have spoken at length to numerous organizations and gatherings. I suspect that there are others currently involved in the IS cause, who could do as good a job as these exemplary people, but I'm just not that familiar with everyone doing so.

[turtledove]

"I do think that 'picking and choosing' various points of previous posts, and then making negative commentary on them truly does little to enlighten or further the discourse."

-I assure you that I fully read ALL that is written. I then respond to the bits that I have an opinion, experience, information on. I don't feel chatty. Expecially since I don't know you people.

"To me, it seems to simply berate or negate these particular snippets, without understanding the full context in which they were written."

-I am sorry that you get the impression I am berating or negative. Perhaps it is because of my style which is a bit robotic(unchatty, autistic, schizoid etc.). I guess to some people I might sound like a know-it-all teacher grading their posts. I do not think I know-it-all nor do I wish to correct what is written (unless it is offensive). I insist that I do understand the full context of all that is written.


"Fortunately, these items are located in this thread, such that interested parties can see these items in their full context."
-That is what I expected people would do.

"It would certainly be better to make some of your own observations or talking points, and then offer some solutions to any problems that you see"

-I made many observations in my post entitled "my thoughs on some quotes from this thread". A few of my observations like 'lol' or 'heh' might not have been helpfull- they were just my feelings. However, I did make 7 other clear and important observations. I posed some questions also. I hope someone will respond to any of the 7 points I made. Currently I don't have solutions to most problems. My own life is a struggle. That is why I am here. I hope that if everyone puts their heads together maybe we could come up with some solutions.
-My reply to mohnblume with the wikipedia link was helpfull I think. If if wasn't why did everyone look at it.



"seriously doubt that we could 'choose' any particular 'celebrity' to represent 'us' "
-I agree. I wouldn't have a clue how to get a celebrity interested. They would have to volunteer because it affected them personally.

"I KNOW that I would NOT want any of the individuals that currently Have or seek 'Celebrity' to be a spokesperson for ME - in Any way."

-Me either. I dont respect most american hollywood celebrities. I can speak for myself. I think the purpose of a celebrity is to excite the TV news media into picking up a story.

"If you want My vote regarding a spokesperson, I would whole-heartedly suggest either our own Betsy, or ISNA's Cheryl Chase."

-I hope I can learn more about Cheryl Chase and Betsy.


I am new to this forum. I hope to learn some things or even possibly make some friends. My main goal is to improve my medical system from neglegent, incompetent, and harmfull, to compassionate, well informed, and helpfull. I don't know how. Doctor don't care about me. We have to be united and vocal for the good of us all.

Turtledove