ISNA Policy

[Ann]

I'm not sure how active ISNA still is, but I honestly don't care if its most recent staff have resigned, leaving it inactive. I was very disillusioned and disappointed that they decided to call intersex conditions Disorders of Sex Development. The way I look at, intersex conditions don't deserve the pejorative of being called disorders. We were made the way we are, no worse than anyone else.

[Kailana]

im really not sure whaats up with
ISNA, I was never too fond of their claims over the DSD nomenclature.

So at least I am in agreement with you on that matter.
Sometimes I wonder if its possible that some within the ISNA infrastructure thought the DSD nomenclature would help themselves to get away from being labelled intersexed.

Not all of us like being labelled as anything other then men and women, although some like me identify as intersexed, most at least in public identify as man or woman, I suppose for some going with the DSD nomenclature sounded good, I however hated it. In my opinion it just relabled ab already generic label, that is what intersexed was meant to allready do. To get medical staff to stop using and missusing the term hermaphrodite/hermaphroditism. Thus Intersexed was used as a general description for anyone born with ambigous genitalia neither clearly male or female.

I really haven't scene alot of activity at ISNA or at least not on their website, I believe someone else mentioned that there latest info was like from 2005.

oh and just incase i missed your intro to BLO, welcome to the forum

[Glenn]

oh good, I wondered about the DSD moniker. Seems ... weird and insulting, come to mind.

[fraulein_Maria]

[QUOTE=Glenn;14934]oh good, I wondered about the DSD moniker. Seems ... weird and insulting, come to mind.

>>> not just you at all. we had a long arguement about it here. its still in the archives if you want to look it up. bottom line?

TS's and 'posers love it.

Real IS'ers hate it.

A professional poll was done at another site confirming it.

Miriam, Peter...

your still in good @<hidden> intersexions, right? see if Mish will let you repub the poll here. <<<

[Peter]

ISNA has folded. The ISNA farewell announcement can be seen in another thread under the "Research and Announcements" section. Maria, I agree with you that the DSD nomenclature is highly unpopular. However, the survey that you referred to had a really major methodological flaw, so I don't want to spread the survey results. Even without the survey, if one looks at BLO member reactions to the DSD nomenclature, I would say that roughly 80-90% of the intersex people who have expressed an opinion on the subject, are against the DSD nomenclature.

Peter

[miriam]

I don't like the DSD-thing but that doesn't mean I have to hate people who use this initialism. It will take a year or maybe it will take ten years, but I'm 100 percent sure the name DSD will change to something else. This also happened to the word 'hermaphodite' and it will happen to 'intersex'.

Too many people have used the word 'intersex' in a way I can't recognize myself in it anymore. People who say they are intersexed can now use their own definition of the word without adding to the confusion.

ISNA has achieved a lot but I think it is time to professionalize the way all groups involved in the treatment of children communicate with each other. Accord Alliance will play an important role in this communication.

Groeten, Miriam

PS. for the record, I don't hate the initialism DSD - I just think it is not accurate. Quite a difference. That being said, I think there are many issues more important than the name.

[prince....ss?]

Nice to see you back. I don't hate the people. I dislike the Consensus Statement. I also don't like "Normals" and "Professionals" and certainly not "Normal Professionals" that sit down and make decisions about how to treat us. They talk to a few intersex people and now they are experts. As you know all to well none of us are the same in the way we think or feel. So how can they make a rational judgment to determine treatment. I think the greatest harm the Accord alliance will do is to continue the long legacy of assigning sex to infants. As you know this one for me hits close to home being that I was reassigned at 11 days old.

[rivkarau]

I was just wondering if someone with institutional knowledge could tell us what happened to the ISNA board and leadership. Did they fracture over a DSD debate? Is the Accord Alliance the cause of the disbanding, or did it step into a vacuum when the infrastructure collapsed? I just want to know if the Accord Alliance takeover was hostile, basically. . .

Thanks much.

[Kailana]

You know it could be that there was just a split in how the new policy/reccomendation was being pushed. This is just a guess, but I really wonder if the board members split/breakup for ISNA happened becuase there was dissagreement over it all. I mean, I can't see how any of the IS'ers could have possibly thought that the new reccomdations were actually gone do anything. You know what I mean?

What I have read, sounds only semi ok if you happen to have one of the less variation causing IS conditions, but if your true-hermaphrodite the guidelines still reccommend removal of gonads and reassignment. There is barely any mention about recieving care for a surgically assigned gender when it is the wrong one made, how a IS patient can go about getting help fixing what they see as being a wrong choice/asignment.

I really feel that there are some good improvements over the new guidelines, but the problem with them is, is that they are just reccommendations, and so far no hospital is actually using them.

Basically those guidelines need to be made laws, not reccommedations. The legal system needs to take action, because the Hospitals and Doctors haven't really understood what they and their actions have done to a whole lot of people. The legal system needs to get involved so that the 50+ years of surgical/mental/doctor/parental abuse on intersexed people ends.

I still don't see any real improvement, fact is some of those new reccomdations confirms that for some IS conditions it is still ok in fact reccommends surgery should be done, regardless of the patients rights as a human being. I think, that is where all the intersexed support groups need to get really angry and involved in public speaking, openly confronting the medical establishment over how we have been treated.

Without doing so, with only having a few really active activists Doctors aren't getting the true picture of what they have done. If more of us speak up and express how we feel, then Doctors may stop saying that there are happy IS patients out there, they will have tostop questioning or saying that only the activists are the angry ones. You know what I mean? We need more voices challenging what Doctors have done and are doing.

The other thing is people need to talk to their friends and family as well. So that people understand that if they have or a family member has a IS child, that what we have experienced their child won't have too.

Overall the IS community does not need reccomdations <---those can be ignored if a doctor wants too. We need Laws, protected status recognized by all Governments, so that we are guaranteed a life not being repeatedly traumatized by the medical community. Cosmetic Surgery should never be forced onto any one, because a Doctor thinks that it is socially beneficial<--- that is just Bigotry disguised as compassion.

Just a few thoughts on the subject of DSD Guidelines.

[fraulein_Maria]

[QUOTE=Peter;14995]ISNA has folded. The ISNA farewell announcement can be seen in another thread under the "Research and Announcements" section. Maria, I agree with you that the DSD nomenclature is highly unpopular. However, the survey that you referred to had a really major methodological flaw,

>>> A fatal one? i mean, i've read so many "scientific" papers, articles, and texts about us now that are so HORRIFICALLY flawed as to be worse than useless (including PAIS'ers, Klinefelter's, and other IS-XY'ers in a study comparing TC rates of C-AIS'ers with men.... of course this artificially inflated the supposed risk of TC in C-AIS'ers.... junk science) that i have to ask this question. I have found its results to be fairly accurate or i would not have bothered to mention it, and found its graphical representation of same to be compelling. Please tell me what you have found. <<<

[Peter]

Hi Maria,

The original survey was done by Michelle O'Brien with OII. As you seem to have read the survey recently, I suggest that you post a link to the survey on the OII website, so that BLO forum members can read it there. I looked through the OII archives, and was not able to find a link. I would be glad to post a link if one was available.

I had an OMG moment when reviewing the survey, but it has been a long time since I read the survey, so I don't remember the precise methodological problems at this time.


Peter

[Peter]

I received the following email from Michelle O'Brien, and have received her permission to post it here as part of this thread. I have great respect for Michelle as an intersex activist and scholar. I agree that the qualitative results of the survery far outweigh minor quantitative issues in overall importance. As far as I know, Michelle was the only researcher who has done a major survery on the DSD nomenclature in the last couple of years.

"Hi Peter,

I happened along your discussion with Maria about the DSD survey on the BLO forum. First off, I made clear that this was not a formal academic survey, but a an attempt at grabbing a quick picture of how people felt at a particular time soon after the introduction of the new terminology (I specialise in qualitative not quantitative research). What was the methodological flaw you refer? Perhaps I could address this. The main one I could see was the means of accessing participants, which was necessarily limited to those I was able to contact. The use of language was an issue - but any language could be questioned in something like this. I had to stop payments to the site it was hosted on, and they do not hold on to the data once payments stop - this was the biggest flaw in the research, because it was difficult to get at the data and analyse it in any meaningful way without access to the site. I have managed to download the figures, and offered to let Gavi have them if they are of any use to him in the paper he is preparing for September. The survey was for me as much as anything, just to get a clearer picture of whether people were unhappy with DSD, that we were going down the right road, how many people were interested enough to respond, and whether they did appear to have been impacted by the issues covered under DSD. Despite the flaws, the survey was not invalid - as I recall, it showed that most people were clear about not liking DSD, and used far more pejorative language about it than the survey. The comments probably gave a better picture of just how pissed off people were. It also showed that most of those who responded had some kind of intersex history - and that those who did not and were transsexual were actually more in favour of DSD than intersex people themselves. One or two were quite outspoken about the benefits of DSD, and these tended to be the people who did not like the way the survey was phrased. Perhaps now, with experience, I might phrase it differently - but it was done in a hurry using a tool I had never used before to get a rough-and-ready snapshot. To that end it worked, and as the discussion you had with maria shows, it did manage to convey the message that people were not alone in being unhappy about it. Believe me, had the survey shown that people were OK about DSD, I would not have pursued my own criticisms - I needed to know where people stood, and that is why I undertook it. There was no consultation before DSD was introduced (I have been reviewing AISSG-UK correspondence on this, and they were as surprised as anybody when it happened); ISNA never bothered to respond to my own response (raise the issue about consultation) after they announced the fact other than unsubbing me from their mailing list. I have never heard of anybody getting a response from ISNA about consultation, and when I spoke to Iain Morland, his impression was that nobody he has spoken with has any problems with DSD. So, this is the problem - all those who worked towards DSD say they have never heard of any dissent, few I speak to are in favour of it - and even those like Emi and Lynnell only supported it grudgingly, making excuses for ISNA, Dreger or Cheryl. I had hoped that by producing the survey it might galvanise somebody within ISNA to carry out a proper survey and consult people after-the-fact - after all they have resources where I have none, and it really was their job to do this as they were the ones introducing the change. It never happened, and the myth that everybody is happy with it still has not been admitted as a falsehood. Unfortunately, this little survey still stands as the nearest thing to consultation any intersex people have had the opportunity to engage with on the subject of DSD, poor as it was - and ignored simply because of its limitations. That in itself is outrageous, as far as I am concerned."