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Ambiguous Gender: The Intersex Surgery Debate

Posted in: Comment
By Craig Young - 20th June 2007

1864-intersex.jpg
While intersex rights groups want an end to surgery on intersexed infants, and informed consent for parents and families of possible risks, some medical groups disagree. What's at stake here?

In the United States, the American Academy of Pediatrics supports early surgery to produce 'normally appearing' genitalia, 'positive' psychological adjustment, good genitourinary functioning, parental welfare, avoidance of harrassment and discrimination from peers of the child, and absence of future problems associated with the intersexed genital anatomy.

The intersexed movement profoundly disagrees with this, ironically enough on clinical grounds. They argue that there is insufficient long-term clinical evidence to support attributions of positive long-term psychological and physiological effects from early infant surgery on intersexed children, let alone studies from control groups where there are adult individuals who have not experienced surgical intervention in this context.

It should be noted that there may well be an available source, given that the British Academy of Pediatric Surgeons differs, agreeing with the intersexed movement that informed consent is an important element in assessing whether or not to have genital surgery performed in this context. However, they also oppose delaying surgery until adolescence, when standard developmental psychology argues that a teenager develops adequate strategic reasoning skills to decide whether or not for him/her/hirself.

Most research here centres on qualitative data, due to the absence of large-scale quantitative data from large sample scale. Samples from clinical contexts disclose positive assessments of early infant surgery, while those from intersex rights groups emphasise negative outcomes, and point to statements from intersexed individuals with intact 'unmutilated' 'anomalous' genitalia that they're able to negotiate difference and wouldn't choose surgical intervention, unless in cases where the anomaly was life-threatening, and then only in that case. General quality of life research data is not specific enough for clinical purposes, and clinician researcher bias may also affect 'positive outcome' research as well as that noted above.

Intersex surgery and its advisability are also subjects of debate in our society, largely due to the efforts of Mani Bruce Mitchell and hir Intersex Society of New Zealand. Given that our own Code of Health and Disability Consumers Rights includes a Right 7 on informed consent, how does that affect the debate here?



A response to this article from Mani Bruce Mitchell:

I am myself an intersex person born 1953. I have had genital surgery (aged eight years). I am also a counsellor and an educatator who has worked in this area for over ten years.

Definitions: the term intersex is relatively new, first used around 50 years ago to replace the very inappropriate Victorian terms of hermaphrodite and pseudohermapdodite. It is a medical umbrella term that covers over 25 different medical conditions/realities. The only thing that groups all these quite different conditions under one umbrella are definitions of the binary norm of male and female. All these variations have been considered by some one to sit outside that normative definition.

Any analysis of the intersex debate I think requires an understanding of dominant discourse, values, theories, fears and prejudices that are operating at any particular point in time. For example the theories of Dr John Money that so informed the treatment of intersex children at the time I was a child have been shown to be deeply flawed.

What I have come to see is 'one size fits all' solutions as simplistic, inappropriate and dangerous.

We have new guidelines emerging that more appropriately reflect the complexity of the intersex reality.

See the www.isna.org for a copy of the newest American guidelines for both practitioners and parents. I support and agree with most of the content of these documents, but I disagree strongly with the suggested new describer DSD (Disorders of Sexual Development). I feel it continues to stigmatise and pathologise conditions that are variations of human development. These are not the only guidelines, and alternative new name VSD (Variations of Sexual Development) Professor Milton Diamond produced a guideline in the 1990's which also should be referenced: www.hawaii.edu/PCSS

Surgery remains a controversial issue and needs to be placed alongside hormone treatment.

Informed consent as a process is in itself complex, and the added dimensions that occur when parents are consenting often at a time of significant distress.

As to clinical research of the actual damage that genital surgery does, I would refer to the work of Lih-Mei Liao (UK) Boyle, Mary E., Susan Smith, and Lih-Mei Liao. 2005. Adult Genital Surgery for Intersex: A Solution to What Problem? Journal of Health Psychology 10 (4):573-584.

And in answering this I go back to something that Milton Diamond talked about in his recent visit to New Zealand. That is the notion of preserving an open future. It fits beside what we now know about gender and gender identity. That gender identity does not come from genitals, that gender identity is not known until the child is older. We know that intersex adults can be very comfortable and okay with non standard genitals.

That we locate ourselves all across the sexual and gender spectrum. That significant numbers of intersex people seek to change their gender identity as adults.

The idea about ''not removing anything that the child might want to have some time in the future".

As to safety, being accepted by parents, at risk at school, or themselves: That's a society issue, all children are at risk if they are considered 'bad, deformed, abnormal, different', as a society we deal with such ignorance and prejudice with education, with challenging unsafe behaviours, with appropriate skilled professional support. I can think of no other physical variation whose potential risk factor is mediated by surgery!

Making surgery illegal? No, I do not support such a move - we need outcomes that produce secure, confidant and informed parents and loved, accepted, valued and appreciated diverse children.

To move from where we are now to that open future Milton talks about will involve a process and all of us looking carefully at all the drivers that have informed past responses past treatments, changes must be informed by Education, Information, Changing attitudes towards Difference - Gender - Sexual Orientation (and expression), Best Practice Imperatives, currently available Research, be mediated by Human Rights and the Laws of any country and have the support of parents and the medical profession.

Mani B Mitchell
Counsellor - Clinical Supervisor - Educator - Change agent
PO Box 9196
Marion Square
Wellington
Aotearoa - New Zealand


Recommended reading:

Alice Domurat Dreger (ed) Intersex in the Age of Ethics: Hagerstown: University Publishing Group: 1999.

Sharon Perves: Intersex and Identity: New Brunswick: Rutgers University Press: 2002.

Merle Spriggs and Julian Savulescu "The Ethics of Surgically Assigning Sex for Intersexed Children" in Peter Benatar (ed) Cutting to the Core: Essays on Contested Surgeries: Lanham: Rowman and Littlefield: 2006.

Craig Young - 20th June 2007

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