Originally, OII was created because of perceived problems in ISNA, such as it being focused on North America, yet primarily Anglophone, with limited acknowledgement of Hispanic speakers, and no attempt to include Francophones, of whom there are large numbers in Canada as well as Eastern USA. The main opposition was to ISNA’s support of DSD, something I am sure you would support ISNA for (apart from being in a country outside their coverage). It was only when OII became militant in its opposition to the disorder in DSD, six years ago, and ISNA shut up shop, five years ago, that people who had been members of ISNA began to join OII – as it was the only international non-condition-specific organisation in the world. Far from dinosaurs, trail-blazers at that time! As for your suggestion that therapies be denied, that is crap – we support treatment with informed consent, and that the individual has the right to choose what form that treatment should take.
Thanks for your contribution Michelle, and my reply is:
The most fascinating thing of ISNA is the name of it’s newsletter, prior to 2002, “Hermaphrodites with Attitude.” Then Chase and Dreger got involved, two academics who may or may not have DSD’s, or Dreger doesn’t for sure, anyway they steered the ISNA away from Hermaphrodite states to Intersex states, then abandoned ‘intersex’ altogether and initiated it seems against the will of the membership “Disorders of Sex Development” aka DSD’s.
Also in 2002 Dreger wrote an article about why all manner of non ‘intersex’ conditions ought to be included as ‘intersex’ using a theory not of how different diseases come about, but how those with them are treated, inferring everybody with what we now call DSD’s are dissatisfied with our medical care, and from my experience, research, case reports I’ve read, and personal accounts by XXY’s or men with Klinefelter’s syndrome, we’re not.
The problem for us has ALWAYS been getting diagnosed early enough and getting adequate hormone therapy. These are the areas we’re discriminated against as even people with severe mental retardation are not castrated, but we are effectively by the refusal to treat! Quite the opposite to what the ISNA XXY and alike members were reporting.
And an extension was added:
I see I need to qualify that last statement. Men or adult XXY’s always got sufficient hormone therapy, well sufficient to XY average at least. But teenage boys who were found to be XXY and variants were often refused hormone therapy as they had not developed the syndrome, whereas the men were full blown and suffering.
Of course for the XXYY’s being 16 and impotent was no laughing matter, and XXXY’s the same. Their learning and behaviour difficulties were, and still are, being used to deny them hormone therapy. And the adults from ISNA were promoting ideas that they had never experienced as they were not diagnosed as teenagers. They appear to be under some weird impression that their experiences are uniform, which is so far from truth you’d need to be completely naive to believe them.
In reality Michelle, I did not complete male puberty until I was 38 years old for fucks sake! This almost seems typical for XXY males! I didn’t complain when I wasn’t developing as my unaffected peers, and I was delayed anyway, and so long as I could have an erection there didn’t seem any need to make any other changes. I had surgeries willingly to improve my standing in male society, which I do not, of course, regret.
And do not let yourself be led astray, what I had done was and is quite normal for young men with Klinefelter’s syndrome. What your people refer to as ‘normalising’ surgery in the negative, we regard as ‘normalising’ surgery in the positive. We are not the same, and your people who who choose not to be treated for their Klinefelter’s syndrome are making themselves sick. And of course as adults they can choose that course of action. But the changes caused by testosterone therapy are by no means permanent for XXY males, as soon as they stop therapy they regress to a prepubertal state. Information given you by your XXY male members is wrong.
And take out the word ‘intersex’ and we’re blood brothers and sisters Michelle. Yes we all have atypical sex development, I agree. Happy now? 🙂 It’s the real issues that affect each group that is important. We don’t share the same issues, not like the XXY or Klinefelter men who regard themselves as intersex declare. They’re making up stories to fit in, claiming all manner of similarities that aren’t there. By treating us our doctors are doing us a major favour, it’s getting the treatment at the right level that’s the hard part.
But your XXY guys, all diagnosed as adults, are presenting fairy tale events. Claiming they liked their tits, and they were just complying to society, when in fact getting mastectomy if the disease is not severe enough from a doctors viewpoint is almost impossible. Or they like the rounded body shape associated with hypogonadism, but take testosterone that guarantees they won’t have that body shape! Doing a Nicky K D Chaleunphone, arguing in effect both sides of the argument at the same time!
Adults are not forced to take testosterone therapy and my doctors were not prepared to forcibly treat me way back in the late 1970’s either, I had to choose hormone therapy. All the guys who protest about testosterone therapy and take it, saying they were told they couldn’t be “real men” without it, are telling porkies, to fit in!