@barleybadminton
The article consistently uses the term intersex, which is being phased out because of the misleading connotations it carries
No it's not, it's a term used by pretty much every Intersex advocacy organisation in the world. Don't mistake what you see on UK gender critical twitter for what's actually happening in the world.
Do these organisations actually do any advocacy for the medical needs of people with DSDs/CCSDs?
Or do they take the funding and run?
It is easily discerned that the term "intersex" is popularly misunderstood amongst lay people as describing one condition (when it is an umbrella term covering multiple conditions), and that people think it means children being born with both male and female genitalia. This misapprehension is hardly helpful. Thus it is being phased out because of the impact on people with DSDs. Someone with a DSD put intersex as a search term into instagram and counted up the ratio of porn results to information about DSDs. Insta is a form of social media used by teenagers and she pointed out the impact this would have on a teenager with a DSD, while coming to terms with their medical issues. To my fellow parents, the issues will be immediately obvious.
A parallel can be drawn with the disability advocacy charity Scope. As you may be aware, the charity used to be known as the National Spastics Society. They changed their name because the medical term "spastic" had gained so many offensive connotations from being used as an ableist insult. Service users and staff wished to distance themselves from that!
Anyway...
This is a statement from 2000 in response to GIRES and Press for Change trying to muscle in on a support group run by volunteers, to benefit people with a specific medical condition. It's... educational.
A Position Statement Concerning GIRES (Bernard Reed) by the Androgen Insensitivity Syndrome Support Group UK (AISSG UK):
Introduction
The Androgen Insensitivity Syndrome Support Group (AISSG) is a peer information/support organisation established in the UK in 1988 (formalised in 1993) and which achieved UK charitable status in early 1999. We are completely autonomous but are affiliated to the Genetic Interest Group (GIG) and Contact a Family.
We have around 120 subscriber members (and many more contacts) in the UK (mostly adults but many families too) affected by intersex conditions such as AIS, XY gonadal dysgenesis (Swyer's syndrome) and 5 alpha reductase deficiency; with some XX female members who have Mayer Rokitansky Kuster Hauser (MRKH syndrome, Mullerian dysgenesis/aplasia, vaginal atresia etc.
We have representatives in USA, Canada, Australia, Germany, S. Africa and Spain. Our website atwww.aissg.orghas received much praise, from people with AIS who come across it after years in the wilderness (having not been told about their condition) and from medical specialists in the intersex field.
Summary
After extensive email correspondence with Bernard Reed of GIRES during mid March to early April 2000, we decided not to work with GIRES at the present time. Overall, we wish to disassociate ourselves from GIRES and to state that they do not represent us.
We have already established mutually beneficial relationships with several groups of clinicians and are working with them on AIS-related research projects and the provision of multi-disciplinary patient care. We collaborate on joint projects with other related support organisations (e.g. the UK Turner Syndrome Society, the Anorchidism Support Group) via a consortium set up by the Genetic Interest Group. Within this consortium (set up in 1999) we have recently published a leaflet for clinicians to give to parents on receipt of a 'genetic diagnosis' and have obtained a grant from the Baring Foundation to enable one of the clinical psychologists with whom we work to carry out counselling skills training for the three groups' helpline volunteers. We also work very closely on an informal basis with the UK's Adrenal Hyperplasia Network (AHN) and Congenital Adrenal Hyperplasia (CAH) Group.
We do not foresee that an association with GIRES would follow the same spirit as those above, so do not wish to join forces with Reed. We believe that Reed's desire to change the medical management of intersex, although reasonable in itself, is based firmly on the discourse of gender dysphoria (transsexualism/transgender, often referred to as 'trans') and moreover masks an underlying attempt to exploit physical/biological intersex so as to provide an authenticity to that scenario, an authentication that it doesn't need.
The historical perspective is as follows:
GIRES Approaches AISSG in 1999
Reed emailed us in July 1999 introducing a UK organisation called the Gender Identity Research and Education Society (GIRES) of which he is chairperson and wanting us to enter into a working relationship with his organisation. We read the hardcopy information that he sent and were put off by several things, but mainly by the fact that:
a) GIRES's heritage seemed to be as a trans, rather than an intersex organisation.
a) Reed seemed to be making a case for trans to be considered as a biological intersex condition. We felt we did not have enough scientific information to know whether this was valid.
While generally agreeing with GIRES's wish to change the medical management of intersex (including childhood 'corrective' surgery), we weren't sure about their claims that transsexualism was "an intersex disorder of the brain" and that the term 'transsexualism' should be abolished and it should be considered as an intersex condition. They also seemed keen on lobbying government to allow birth certificate changes for post-operative transsexuals (not an area of great concern to us, although some of our members would like to have a category of 'I' for 'sex' on official forms/documents in general). It all seemed rather political and we as a group are wary of taking political stances. We did not communicate with Reed further, other than to thank him for his information.
Approached Again March 2000
In March 2000, the person who runs our helpline received a phone call from Reed and, having forgotten about our reservations about GIRES, agreed that he could attend an AISSG group meeting a week or so later.
We emailed him to ask why he wanted to attend and it seemed from his response that he wanted a) to see what happens at our meetings, b) to do a presentation, with slides, on GIRES, and c) to discuss possible joint ventures. We explained that our agenda was already fixed (and full), that our support meetings were not the forum for all this anyway, and asked him not to attend (but suggested we might meet on another occasion). At that time he also urged us somewhat insistently to collaborate with him a) to influence what was to be covered in a TV documentary that the BBC wanted to make for the Horizon series, and b) to form a joint policy, along with the UK's Adrenal Hyperplasia Network (AHN), on what we would all present at a British Association of Paediatric Urology meeting in Sept 2000, to which all three organisations had been separately invited by the association (we accepted our 'invitation to speak' in October 1999). He was also excitedly recommending organisations like the Intersex Society of N. America (ISNA) to us, as if wanting to act as a catalyst between us, and possibly not realizing we'd already been in touch for some years.
The Dialogue Starts
We started asking questions about GIRES's policies and aims, about the nature of its membership and its credentials as a mouthpiece for intersex people. There followed a number of emails from Reed giving information about GIRES and asking for our comments on some GIRES guidelines for the medical management of intersex and on a draft synopsis of the issues that GIRES thought the BBC programme should cover.
Throughout his emails, and in his guidelines/synopsis, Reed would employ the phrase "gender identity and intersex conditions" as a means, it seemed to us, of slipping gender dysphoria into the picture without explicitly saying so. While many of the points in GIRES's management guidelines made sense at first sight in terms of intersex, we were wary of this "Trojan horse" approach to including trans within these recommendations because whatever aetiological considerations might link these, in terms of medical treatment there is a world of difference between purely gender issues and the issues faced by intersex children. We did not comment on the content of the guidelines/synopsis.
We noted several other things during the exchange:
a) Reed wrote that "We don't ask our members what conditions they have" and "I am confident that the majority of our members have no condition at all and nor does any member of their families. I estimate that only 7% of the charity's income is derived from those with a condition or the parents of such persons." It seemed strange for someone representing an organisation so underweight on the intersex side of things to be throwing so much weight around in that sphere.
b) names of well-known researchers and clinical experts seemed to appear 'overnight' against the various topics on further drafts of his 'BBC synopsis'. At least one of them (a consultant gynaecologist in the team at the UCL/Middlesex Hospital, London, who are our main collaborators on research/clinical aspects of AIS) had no idea she was itemised in this way and was quite annoyed; so we surmised that others possibly hadn't been consulted either.
The BBC Approaches Us
Meanwhile, Heike Rebholz at the BBC had already contacted us by email wanting to talk about how we might take part in the Horizon programme. Our understanding was that the idea for the programme came out of recent publicity about the "John/Joan" (or "Money vs Diamond") case, so it was to cover the issue of childhood genital surgeries.
An intermediary (an AISSG member with media experience) reported back that Heike was looking at the issue of 'corrective' surgery in Britain. And that she wanted to know whether the group had any members with 'partial' form of AIS (PAIS) who'd had surgery for a large clitoris/micropenis and now wished they hadn't, or someone who felt the surgery took too much away and left them with loss of sensation. And whether there was a spokesperson from the group who could say what the group's feeling was regarding surgery for so-called ambiguous genitalia - whether it should be left until puberty etc.
Our Response to BBC
We reported back to Heike, via our intermediary, that we didn't know how many of the 30 or so Partial AIS (PAIS) women/children on our list had undergone clitoral reduction surgery, but we knew of some adult PAIS women who definitely had not, and who are quite happy with that state of affairs. We had no contacts who had complained to us about this type of surgery. We had one recent overseas parent contact whose newborn was more or less given surgery without the parents having much say in the matter. The mother had subsequently discovered our group, read "negative things" about such surgery in our newsletter (ALIAS), and become very depressed and angry. We explained to Heike that the overwhelming majority of our contacts (several 100) had Complete AIS (CAIS) for whom clitoral size/surgery is a non-issue anyway.
We told Heike that on ethical, social, philosophical grounds we were against any surgery without fully-informed consent (which meant no cosmetic surgery of this nature on infants/children) and that society should overcome its fear of non-standard genitals rather than forcing infants/children to conform to some 'standard' that is patently contrary to that which Nature actuallyprovides, and that we also saw such surgery as yet another tactic (in tandem with secrecy regarding diagnostic information) in trying to cover up the very existence of intersex.
But we had to tell her that we didn't have the direct experience or voice from our members to qualify us to participate; and that we were more concerned with issues of truth disclosure, lack of emotional support, childhood gonadectomy without informed consent, osteoporosis, poor treatments for vaginal hypoplasia, lack of availabilty of carrier testing etc., issues that would presumably dilute the programme away from the topic of 'corrective' genital surgery.
We Decline GIRES's Call to Collaborate
We also sent the above information to Reed and added that we were uncomfortable with GIRES's blurring of biological intersex with gender dysphoria. We were unhappy about the possibility of a programme that set out to consider the specific question of childhood surgery being turned into one which addressed the wider issues of "gender identity" as represented, partly at least, by gender dysphoria (i.e. a group of people who were never likely to have had genital surgery forced on them in infancy/childhood). We felt that in the same way that we didn't have enough direct experience of the question of childhood surgery, we also didn't have knowledge of any scientific evidence that transgender/transsexualism was a physical/biological intersex condition. We felt that the potential inclusion of trans issues in the BBC documentary carried a risk of confusing the general public even more, the question of childhood surgery being complex enough on its own. We told Reed that we were unable to co-operate with him further on these issues.
The BBC not Swayed by GIRES
We expressed our concerns to the BBC about GIRES muscling in on the planning of the programme in a rather assertive manner. Heike replied, saying she was concerned about this too, and informing us that her agenda was still very much open and that she still wanted to talk with us.
AISSG Withdraws
However, by that time we were so exhausted by the whole thing that we backed off completely. The day-to-day operations of our group are run by only three people, all of whom have busy full-time occupations and who thus have to devote most of their spare time to support group work. In the end we just got fed up with being constantly pressurized by Reed, and found dealing with GIRES an unnecessary distraction when we had many other tasks to address at same time. We decided we were content with the progress our group was making, we were quite capable of speaking up for ourselves, and were building good relationships with clinicians and with other patient support groups, and thereby significantly influencing research and patient care in a more collaborative and less radical manner.
PFC Approaches Us
On 9 May 2000 we received an email from Andrea Brown of "....Press for Change in the United Kingdom which set up the organisation known as the Gender Identity Research and Education Society (GIRES) approximately two years ago..." asking for our opinion of Reed's activities; and this is what has prompted this statement. We'd like to thank those members of PFC who have showed concern over this matter and given us an opportunity to make our position clear.
Androgen Insensitivity Syndrome Support Group (AISSG) UK
www.aissg.org
A number of other patient support groups issued similar statements around this time.