Plea to intersex activists and support workers on behalf of OII
Being touched by the physical Diversity of Sex Development which was seen as requiring surgical intervention in childhood, I grew up finding that this Sex-Diversity was also reflected as a manifestation of Gender Identity Diversity. Many intersex people appear to have a fixed gender identity from birth, although for some this may be a malleable gender identity, but once assigned a sex manage to develop a gender identity congruent with that assignment. Some, like me, may not; for some it may be fixed, but not according to the assignment, for others it may be fluid, but not in the direction of assignment. Had the understanding of the times when people like me grew up been different, I may have developed differently; perhaps not having surgery may have made a difference, or perhaps surgery I could have consented to that was more in line with gender preferences I might have expressed could have made a difference, or even a different assignment may have made some difference. I will never know.
What I feel quite strongly, however, is that people who find they reflect the Diversity of Sex Development in their own bodies should be dealt with as a manifestation of that diversity, and not as disordered; also, that people who do reflect that diversity as well as reflecting a wider gender-diversity, should not be dealt with as if they are not manifesting sex-diversity, nor that they should be treated as if their manifestation of gender-diversity is disordered, nor that only a gender disorder applies, erasing their issues of sex-diversity as if these never happened.
The term 'Disorder of Sex Development' has been introduced as a medical term, and some intersex activists have advocated a widening use of this. However, it is largely defined as a group of conditions which in individuals may not exhibit any obvious signs of Diversity of Sex Development. Milton Diamond had recently expressed a preference for the term 'Difference of Sex Development', and we would support this usage in particular cases, or some other term such as 'Diverse Sex Development'; we would encourage the use of 'Diversity of Sex Development' when speaking in more general terms about these issues.
We do not have any expectations that medical, legal, insurance and other professional personnel dealing with these issues should change their terminology. They are free to use whatever language they find most useful in helping intersex people, and we support their usage within a purely medical, professional context. However, we do feel that 'disorder' is a value-laden term for many people, including parents, intersex people, and members of society. We would not want to see people frightened by being told they will have a sex-disordered child following screening tests, or that they have given birth to a child who is sex-disordered.
We propose that the medical nomenclature be allowed to stand at this time, but that future non-medical publications, public discussions, advice to parents, press releases, etc. do not use the term 'disorder'. Instead, these issues be dealt with using the terms 'difference', 'diverse', and 'diversity' depending on whether in a particular or general context. That whilst medical, health care and support staff be free to use whatever term they wish in professional discourse, we ask that they restrict their terminology to that context; where they interact with individuals or couples who are pregnant, parents, intersex people themselves, as well as the media, they use the more acceptable terms.
We ask that for the second edition, the 'DSD Consortium' modify its own publications to reflect this usage: particularly in the name of and within the parent's handbook. In the professional guidebook, it should be made clear that care should be taken in using the correct term while speaking to parents, rather than the specific medical term. Any similar guidelines and advice notes derived from these two publications and the work of consensus group and the Consortium could also implement this practice.
We also urge intersex campaigners and activists to stop the process of misinformation which presents Diversity in Sex Development and Gender Identity Diversity as being universally discrete issues, when the evidence shows that a significant number of individuals who exhibited sex diversity in infancy do go on to reject their sex assignment. That is not to conflate the two issues, but to be clear that a small percentage of intersex people (higher than found in the rest of the population) have grown up unhappy with their original sex assignment.
This plea and recommendation is made in good faith, despite our having been excluded from any consultation and consensus forming process; it is made in the hope that the fracture over this issue between intersex people can be healed.
Proposal submitted by Michelle O’Brien – OII-UK
