This article has been a long time coming. Each time I’d revised it, some new discovery added a pertinent dimension that needed to be addressed. But one thing is certain: the future of medical care for transsexuals is changing — whether this change comes in the form of a delisting of Gender Identity Disorder as a mental health condition, or a revision of GID of any significance in the planned DSM-V, or simply new scientific discoveries akin to the finding surrounding the elongated Androgen Receptor gene or studies of Endocrine Disrupting Chemicals such as diethylstilbestrol (DES) that call for further research.
What is needed right now is to assess what our community itself can do in order to (best case scenario) drive the change toward a better model of transsexual health, or at least to (worst case scenario) avoid a future in which transition and surgery are further restricted or made unattainable to the people who need them. I’ve said that I don’t think that we should scrap the existing diagnosis of GID without another medical model in place. We — and our trans medical professionals, students and allies — strongly need to work toward this alternate medical model now. Finding problems is easy; finding solutions takes much more effort. And I’m not presuming that we can just do this without the checks and balances from professionals that would typically be accorded to any other medical study, but there are some fundamental ways we can help shape the model of care to come.
Because if we don’t, someone will do it for us.
Many in the community call for a complete removal of GID from the Diagnostic and Statistical Manual that governs the current model care. The reason most often given is the stigma associated with the classification of GID as a mental health issue.
I’ve often commented that I would support such a thing when a replacement medical model was established or developed enough to become the new standard. I have quoted several reasons not to remove the current definition until a new medical process is in place:
- In places where there is medical funding for Gender Reassignment Surgery (GRS), such as in nations with an inclusive health care plan, or even through personal or company insurance plans, the current diagnosis is used to establish the medical necessity of these treatments. Even where there is no funding, access to care through referrals and through those doctors willing to treat trans patients for trans issues can dry up without an established medical model;
- Legal protections and processes such as the changing of driver’s licenses for transsexuals are sometimes (though not always) dependent on the establishment of medical necessity of GID;
- With all that occurs during transition, it may not be wise to remove the element of therapy completely (I’m sure that this is probably harder for people that have not had the quality of care that the two therapists here provide to acknowledge), although the process should never have been totally dependent on it.
There is also another serious issue to consider when talking about the removal of GID from the DSM. In the Province of Alberta, we know of 4 psychiatric hospitals that have an established pattern already contrary to WPATH standards of care. Doctors in these clinics have a tendency to dismiss GID as an option (even if previously diagnosed), and choose one of their favorite alternates: Borderline Personality Disorder or Dissociative Identity Disorder (formerly known as “multiple personality”). Under these diagnoses, ECT has sometimes been selected as a method of treatment, as recently as this past fall, during an incident that drove the point home to me. I am concerned that without some medical model that can be pointed to or some established diagnosis, it will not simply be doctors who willfully dismiss transition as a valid method of treatment who will misdiagnose and seriously harm transsexuals who come to them while trying to cope with issues of shame and self-destruction. The diagnosis of Transvestitic Fetish should also be removed from the DSM, but this is not likely and trans activists have been far less interested in advocating for its removal — so this means that there is likely to be yet another alternate diagnosis, one that still has “mental health” baggage, and is thoroughly inaccurate for transsexuals. The diagnosis of TF, in fact, is being reassessed by one of said controversial therapists, who is also the inventor of the theory of Autogynephilia, which is used in a major Canadian clinic as an alternate diagnosis to GID.
And yet, I do recognize that removal will at some point in the future be a necessary step. The selection of therapists that are of serious concern to the community to shape the diagnosis of GID by 2012 (and the APA’s clear andobvious refusal to change the makeup of the Sexuality and Gender Disorders work group) makes this much more urgent. Some of them have been involved with the process before, and the DSM does not dictate treatment, so the change is not likely to be cataclysmic in some ways, but it certainly could feel that way for those who are excluded from treatment by new limitations or changes in definition.
The discovery that there is a greater-than-typical occurrence of an elongated Androgen Receptor Gene among male-to-female transsexuals than in the general population is not a definitive finding. It does, however, demonstrate that there are likely biological factors that will eventually be linked to transsexuality. The science is not there yet, but it is slowly developing. Science is not yet ready to demonstrate specific biological triggers in order to establish a physical / non-psychiatric medical diagnosis. It may be ready, however, to establish a likeliness that can justify continued medical classification and treatment, but it will take more than what is available now. This is where we can affect the change in TS care. More on that in a minute.
In fact, removal from the DSM is becoming urgent — how urgent depends on how much the current definition is to change in 2012 from being in the care of the APA’s revision work group (it won’t be cataclysmic, but it won’t be an improvement either). As a consequence, we need to begin everything that we can do *now* to push toward the development of a medical model that is not dependent on the diagnosis of GID.
For those of us in trans advocacy with no medical or scientific background, this means that we need to:
- Network the best we can with allies in the medical and bioscience communities in hopes of finding more allies and fostering new work (and maybe be prepared for conclusions to not always be what we want them to be — we’re better in the long run to reach accurate conclusions than to skew things the way we might want to see them). We need to develop a larger diversity outreach strategy to educate medical professionals about the transsexual experience;
- In those instances where funding fails because of lack of pharmaceutical company interest or other reasons, such as has happened with research of DES, we need to try to inspire medical students and / or faculties to take up those projects from a purely desire-to-know basis or the possibility of breakthrough findings;
- Perhaps most importantly, we must record (and encourage the sharing of) the experiences of the willing in our community, in order to build a weighty body of evidence to demonstrate those things that we do know for certain. Current medical studies are hampered by a lack of case studies. If we create a body of case studies, with care to ensure that it would meet a medical standard for research, there will be a voluminous, demonstrable collection of evidence (anecdotal, perhaps, but until the science is further along, the only thing any side in the discussion has is anecdotal) of the medical necessity of transition and surgery for those with severe gender identity variance.
A global trans case study project, perhaps. Should an organization be formed to drive and organize such an approach? Are there viable collections already available to be built upon? Is there an existing organization interested and positioned well enough to be able to develop such a thing (and willing to let the collection remain in the hands of the trans community should they someday choose or be forced to abandon the project)?
Because it may be enough for us to simply know what we need to do to put ourselves together, but the next generation may very well have to prove it.
Crossposted to The Bilerico Project, which is a finalist for Best LGBT Blog in the 2008 Weblog Awards (Show your support!). Permission is given to circulate this article, provided no one else claims ownership of it.