Recently, people were asked for feedback on a couple of pamphlets released for guidelines for care of, and advice to parents of, intersex children.  What say can I have on guidelines for dealing with children and advice for their parents?

I have no children and am not in a position to do so. Those who are who are in a position to comment about this terminology are not addressed by these pamphlets. However, in producing these pamphlets, what the authors (and the organisations that endorse them) are doing is changing the terminology used, but in a way that excludes people to whom it can be applied by extension. In other words, were this to be a pamphlet about the application of terminology to existing adults, then I would be in a position to comment; but the manner in which this change has been bought about, I am effectively disenfranchised from that discussion.

I am disenfranchised in a number of ways:

• by having the term applied to me without having been consulted.
• by being excluded from the coverage by virtue of not having an intersex  condition considered acceptable to physicians and certain activists.
• by being excluded because I do not subscribe to the definition.
• by being excluded because I manifest my condition in ways deemed unnacceptable to physicians and certain activists.

This may well have a lot to do with why this has become a controversial debate. The fact that those who promote the use of this term are surprised about a reaction shows that they must be out-of-touch with many in the community they claim to represent. This is not surprising when both have for so long deemed themselves to be arbiters of who is and isn’t intersex, telling others what they are, rather than listening to people.

I find that the term disorder is a problem because it is used as a way to encapsulate me – I have this disorder (DSD, GID, whatever).  I think it works the other way around, the disorder emanates from me – my being, my sexual development, my gender identity, whatever, disrupts someone else’s order – dis-orders their world. That someone will try to locate this disorder in me, but actually, it is the limitations of their consciousness that means they cannot allow their world to be disrupted in this way. These disorders are social disorderings, but the approach is to locate specific solutions in the individual, rather than allowing society to become re-ordered and renewed.

If intersex is a disorder, that means that it is disorder that someone has; the problem is to do with the individual, and the way the problem has been fixed is to fix the individual (preferably before it becomes a problem for society).  If it were regarded as a social issue, then it would highlight some kind of dysfunction in society; the problem would be to do with society not being able to deal with certain types of individual, and the way you would fix the problem would be to fix society.

There are medical issues around disability, but disability itself is not a disorder – although a specific disability may be called a disorder.  The approach that has developed in many civilised countries (since the extremes of National Socialism illustrated the unpleasant effects of framing the problem of disability as the inferiority of individuals), has been to try and enable people who find themselves disabled.  This is because the concept of disability is seen as a social problem.  The problem is not that individual is different, but that society treats the person as inferior, and places obstacles to their participating fully in society – rather than removing those obstacles.  This is why we have laws that enforce public buildings to ensure wheelchair access, and other means of rectifying the inequalities and discrimination against people who are regarded as having some form of disability.

The same is true for people who are gay or lesbian.  Laws have been passed to remove obstacles to their full participation as productive citizens.  In this country, they have rights in employment, will soon have rights in terms of the supply of goods and services, and have recently been allowed to enter into civil partnerships.  This is a situation where people once considered to have a medical disorder have now been accorded full rights as citizens – theoretically.

People who are dealing with a disorder can deal with the social issues.  I have Crohn’s disease – when this initially flaredup I had huge discomfort; it was clearly a medical problem, and was disabling when it first appeared, and yet there were social implications as well.  partially this was to do with access to public toilets.  It was a nightmare going out, because I needed to be close to a toilet at all times.  Any disorder may well have social implications.

When a campaign starts to become based around a disorder, then it is undergoing a fundamental paradigm-shift.  A reverse example of this was when the UK Schizophrenia Fellowship became Rethink – the emphasis shifted from the problems of people encountering people with schizophrenia, to advocacy and support for people with schizophrenia; from the treatment of an illness to dealing with the illness one has, and the social issues arising from it.  In the case of DSD, what seems to be happening is the opposite.  What is accompanying this seems to be a lot spinning to assure people that what is going is not the reverse of what I just described, but using quite convoluted pseudo-deconstruction of certain words to assure people that by disorder people do not really mean disorder, for example, certain comments on about de-pathologising pathology.

In some ways, the word intersex has become as oppressive to some as it was once liberating – but to describe something that has become so integral to some people’s own self-acceptance as disorder is immensely problematic.  Whilst people may have a specific syndrome, to pull these all under the umbrella of disorder is worrying.

Organisations, like medical people, researchers and academics are free to do this re-definition, they do not answer to anyone; I hope it works out for them.  But, they will lose people on the way, and have started to already, because they have chosen to reduce their sphere of coverage.

They have reduced their coverage in a number of ways:

• those alienated by having the term applied to them without consultation.
• those who do not have an intersex condition considered acceptable to physicians and certain activists.
• those who do not subscribe to the definition.
• those who manifest their intersex condition in ways deemed unnacceptable to physicians and certain activists.

But, most significantly: those who see the consequences of treatment as having political and/or social implications are excluded by virtue of the shift towards a socio-politically motivated medical paradigm which denies the social impact of such treatments.

There is a quite straightforward way of looking at this. Some regard DSD as potentially oppressive, and organisations using the DSD term are thereby redefining themselves as organisations which are primarily concerned with medical aspects of these conditions.  According to where people stand on this matter, they become defined as being either in or out of allegiance to such organisations. DSD-subscribing organisations (and the medical practioners, researchers and academics with whom they are now integrated with) cannot enforce the use of the term on a community of which they are just a part.

This may be of benefit, in helping to liberate the term intersex by de-coupling it from medical terminology and medicalisation, to some extent. People who are primarily concerned with dealing with disorder do not have to focus on other issues – and those who are concerned with dealing with the social consequences of being intersexed can focus on that.  Hopefully, somewhere in all that, the issues of unwarranted intervention in the lives of infants and children will not get lost.

It seems that this situation has these aspects –

• how to treat what is disorder.
• what is best for the human concerned (in the  family and society).
• the ethical boundaries of infant, childhood and in-utero interventions.
• the social consequences of finding oneself having been treated for an intersex condition.

Medical practitioners, academics and researchers seem to have located themselves most strongly at the top of this list, with a sliding scale of priorities down to the fourth item.  DSD-subscribing organisations seem to be placed most firmly in the middle two, with lesser interest in the first, and have removed themselves from an association with the fourth.  This leaves the last three items the primary concern for those who do not subscribe to the term DSD.

Copyright Michelle O’Brien June 2006

Postscript.

Much water has passed under the bridge in the eight years since this was written. I would like to take this opportunity to note that at the time of publication in 2006, three intersex people who proofread the handbook did voice their own objections as follows:

We are grateful for the participation of David Cameron, Peter Trinkl, and Esther Morris Leidolf in this project. However, they would like to make it known that they do not support the term “Disorders of Sex Development.”

http://www.accordalliance.org/dsdguidelines/htdocs/parents/acknowledgements.html

And thank them. I also want to acknowledge that this was a difficult time, and one which has seen much work done in healing the divisions that were introduced into the community over this issue.