Trans Depathologization: the spark of change.

From Dented Blue Mercedes:  http://dentedbluemercedes.wordpress.com/2012/10/30/trans-depathologization-the-spark-of-change/

By Mercedes Allen
October 30, 2012

I watch a lot of news stories unfold, reading left-wing, centrist and right-wing media alike.  In the course of a news story, issues ignite, blaze hotly and then smoulder into memory.  After awhile, one develops some sense of when a campaign will spread like a prairie fire or when it will extinguish itself.  The quest to depathologize transsexual and transgender people (or more likely just transsexed individuals) has smouldered for several years, but recently, something is happening.  It reminds me of looking at a match at the moment of ignition.  Flame shoots out in every direction, then chaos, and then it wraps itself up in whatever movement of air there is… or is blown out by it.  This effort, this time, I think will ignite into a blaze — with the only unknown being whether or not the World Health Organization will listen and respond.

There is a rejuvenated movement to have trans diagnoses removed from mental health classification, under the common belief that if transsexuality were no longer considered a mental illness (in the way that happened with homosexuality was in 1973), that it will lead to the level of acceptance that gay men and lesbians have attained.

This as something that has to happen.  But if not done with care and consideration, it could become more chaotic than it needed to be, and burn more people than necessary in the process.  Here’s why, and what can minimize this.

First, the Background.

Jenna Talackova, the beauty queen who fought for the right to compete in the Miss Universe Canada pageant regardless of her trans history, wants you to know that she’s not sick.  In a petition at change.org, she writes: “… the World Health Organization (WHO) insists that I, and millions of other trans people are sick. The WHO actually considers transsexualism to be a mental disorder.”

To that end, she is petitioning the World Health Organization to stop considering transsexual people to be mentally ill, as the WHO revises the International Classification of Diseases (ICD 11).  The ICD includes transsexuality as “Gender Identity Disorder” (GID).  The American Psychiatric Association does the same in their similar volume, the Diagnostic & Statistical Manual, although the petition is addressed to the WHO only.  The DSM is the volume used in the US, while the ICD is the reference used in most nations outside North America.  The APA has proposed to change the name to “Gender Dysphoria” for the upcoming DSM-V, which some have trumpeted as being a change from mental health classification… but it really isn’t.  In fact, the proposed revision to the DSM has gone backwards, by annexing intersexed conditions into the definition of GID.

Jenna’s petition is part of a larger project through Change.org, with a single petition split into six campaigns.  The U.S. version of the letter is written by blogger Maxwell Zachs, a cast member of  the UK reality TV show, “My Transsexual Summer.”  There are others for Spain (with Carla Antonelli), Italy (with Vladimir Luxuria), Germany (Kim Schicklang), andFrance (Rochelle Gregorie).  49,000 people have signed on since the petition launched in early October.

The genesis for this project appears to come from Stop Trans Pathologization 2012, even though petition links don’t appear on that group’s website, and it may be only loosely affiliated. STP2012 recently marked its International Day of Action on October 20th, for which this campaign was apparently conceived.

The Need.

There is no doubt that there is a need for change, and that sooner would be better than later.  Some of this is optics: as long as the public thinks of transsexuality as mental illness, it provides seeming justification for creating roadblocks, denying employment, denying housing, blocking access to services, blocking access to health care funding, and more.  Throw a rock in the air, and you’re sure to hit any of thousands of right-wing commentaries that use mental health classification as reason to oppose even basic human rights inclusion for trans people.

Depathologization is the benchmark “marriage” issue of trans people.  Medical classification actually affects more than just transsexed people, although nobody seems to be questioning the categorizations that affect non-transsexed trans people.  Which is why there is some temptation to see this as an effort that benefits mostly those in trans communities who are privileged and not affected by some of the more urgent forms of disenfranchisement.  Especially when over 40 years later, gay men and lesbians are still routinely accused of mental illness (although that argument has no value, other than to challenge peoples’ expectations), and even still off-and-on classified that way in some areas.

But it’s not just optics.  Pathologizing diagnoses are sometimes used to adversely affect custody of children, employment, access to support services, participation in the military (most notably in the U.S., where the end of Don’t Ask Don’t Tell didn’t help trans servicemembers) and more.  There are many tangible instances where this classification becomes a roadblock.

The current diagnosis also sets itself up to be a pre-existing condition, thus allowing it to be exempted from coverage.  In this case, any trans-specific diagnosis would be a problem, and the problem lies with the overall concept of “pre-existing condition” exemptions.

Diagnosis is not treamtent.

The current diagnosis also directs people to a horribly gatekeepered medical system, although it should be remembered that the standards of care are not directed by the DSM or ICD, and removing the classification may not necessarily change this aspect… other than perhaps changing who the individual gatekeepers are.  Gatekeeperism has always been a double-edged sword.  When the person in question is a genuine ally, this has proven to be a reliable route through transition.  But unfortunately, that has often not been the case.  And even when the gatekeeper is an ally, the waiting list to see them is itself an unusual barrier, and the pathway often comes with an expectation of a person fitting a narrow cookie-cutter template.

As it is, though, there are significant challenges to finding medical professionals who are: willing to take on trans patients; not doing so for an opportunity to dispense aversion or reparative therapies; willing to treat according to current WPATH or harm-reductive standards of care; and preferably also experienced in trans health issues.  What we have isn’t working.  But without something to point to the medical process and to demonstrate medical necessity (which a diagnosis does), the net result for trans people could be significantly worse.

But it needs to be remembered that diagnosis is not treatment.  While the two are connected, and affect each other, addressing a diagnosis does not necessarily change the existing treatment processes, other than to sometimes throw them into chaos or abandon them.

Be Careful What You Ask For…

Unlike when homosexuality was declassified from mental health arenas, transsexed people do have very specific medical needs (such as genital reassignment surgery, mastectomies and hysterectomies for trans men, tracheal shave, facial hair removal and breast augmentation for trans women).  And if depathologization isn’t addressed with the greatest of care, the result on access to trans health care could be disastrous.

In April 2008, I wrote an article entitled Destigmatization versus Coverage and Access: The Medical Model of Transsexuality.  That article has been picked up by a number of sources and even a couple academic texts, and cited often — usually as a “No” vote on the issue of depathologization (which frustratingly mischaracterizes what I wrote).  In it, I wrote about the quandary presented by the current diagnosis, and argued that declassifying the diagnosis of GID is inevitable — but before it can be done, an alternate medical model that does not depend on a mental health diagnosis needs to be developed and established, so that existing medical access for people in transition would not be compromised or lost.  A bit of that article is out of date, other aspects reflect some misconceptions of my own when writing, which saw the diagnosis and treatment as more interwoven than they actually are.  The ICD and DSM classifications merely classify, they do not recommend treatment, and that does provide more optimism than reflected in that article.  A diagnosis justifies seeking medical care, though, so they’re not completely decoupled.

When I wrote that article, it was in hopes that someday soon, I’d need to follow it up with happy news of some new development, a brilliant new direction being explored, and a new diagnosis and medical model being imagined and refined.   Instead, nothing has really changed.

The Risk.

Here are some things that are risked in removing classification:

1. Funding.  In most public and private health insurance structures, a medical code is required to justify the paying out of money for surgical and non-surgical health procedures and services.  So public and private health funding of sex reassignment surgery (GRS/SRS) are vulnerable.  Insurers see them as “cosmetic” procedures, and switching to an elective medical model will only reinforce that perception.  Mastectomies and hysterectomies for trans men might also be affected in this way (unless an alternate justification is given), and conceivably also counseling, or visits to a family doctor for HRT prescriptions and monitoring (depending on billing requirements and local regulations).  And then there’s the HRT itself.  Not all of these are funded in all areas, and in fact, some regions go to great lengths to deny funding for any or all of these things.  But some do, and they could be compromised if GID / GD is simply declassified, with no contingency plan.  Moreover, delisting would significantly hamper the potential to gain funding from insurers that don’t currently cover trans health.
2. Access.  Simply put, if there’s no diagnosis, a doctor doesn’t have any obligation to care.  If there is a medical classification in some form, there is an obligation to provide care, or at least not stand in the way of it.  This doesn’t always work this way, but the existing situation provides us some recourse when access issues occur.  Further, many surgeons and doctors may not be willing to take on trans patients under a personal elective system, because of fears that we’d change our minds and sue.  The existing 1-to-indefinite year of therapy process has provided a comfortable barrier against legal liability.  How many medical professionals would simply walk away rather than accept that new risk to help trans people — especially with any obligation to treat removed from the equation?
3. Identification correction and citizenship.  Given that many regions also require a change of physical sex in order to change major identity documents, financial and access barriers to trans-related procedures also extends the time before legal and social enfranchisement is attained.  It shouldn’t be that way (and has been fixed in a couple fortunate jurisdictions), but it is.
4. Counseling.  While it’s a problem that transition is dependent on therapists, there’s also some need for caution about taking psychiatry entirely out of the equation, at least for those who want it.  Transition does bring with it some emotional upheavals, particularly related to associated stigmas (which won’t simply be gone when transsexuality is no longer considered mental illness) and challenges (unaccepting families, depression from things like job loss, etc).
5. As twisted as it has been, the existence of a medical classification has provided a form of validation, even if the specific application also invalidates.  It has forced people to acknowledge that we exist.  The problem is that validation has focused on what’s in our heads rather than on what we’re actually bringing into alignment, which is our body.  But regardless of the mistaken focus, this validation has helped to push for legal support.  Just as easy as it is to find right-wingers pointing to the mental health classification as a reason to disparage, you can also throw a rock and randomly hit a reference used to justify and defend.  From a statement made by 20 local and regional NGOs operating in Malaysia, responding to a ruling upholding a law making the wearing of clothes which are considered incongruent with one’s birth sex punishable with a fine of up to RM1,000 and / or up to a year in jail:

In the latest edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM) the American Psychiatric Association (APA) replaced the diagnostic term “Gender Identity Disorder” with the term “Gender Dysphoria”, “a marked incongruence between one’s experienced/expressed gender and assigned gender”.

The APA too, in a statement urged the repeal of laws and policies that discriminate against transgender and gender variant people.

This is probably a bad example, because the four women who challenged this law lost their case.  They were met with a court ruling that cited Islamic texts and ordered that “religious authorities give counseling to the four and that they act prudently during enforcement.”  Having a diagnosis to cite does not always help.  But sometimes it does.  And when it does, it can mean everything — even a person’s freedom, or their life.

Having the standards of care carry over into physical health treatment in a way that would avert these risks is a greater challenge than many believe.  In the case of the DSM, that volume only has province over mental health issues, so its editors can only declassify.  But the ICD, which is the subject of the petition, does govern both physical and mental health classifications.  Its editors at the WHO can bring about a reclassification, and in fact are best positioned to do so.  But…

Is it congenital?  The challenges to reclassification.

Before a reclassification outside mental health can occur though, a cause needs to be ascertained, and diagnosable criteria defined. Is transsexuality congenital?  Would classification as “Congenital malformations, deformations and chromosomal abnormalities” (Q50-Q56) be just as stigmatizing and warrant yet another future change?  Some intersex groups are fighting against just such a classification, or at least the language used.

Recategorization is not yet feasible, although there have been many intriguing research avenues found in biological sciences which call for more study.  Convincing the medical profession to move a diagnosis when they believe that the current model is workable in their eyes (even if not perfect) is difficult, especially if the alternatives are not yet conclusively proven or causes defined tangibly.

The Informed Consent Model of Care.

The only new development in adult trans health since 2008 is that more people are using what they prefer to call an “informed consent” model of care.  Campus Progress discussed this earlier this year:

Clients at many of these clinics [PDF] can acquire a prescription for hormones after basic laboratory tests, a consultation about hormonal effects, and signing a waiver stating that they know the risks of treatment.

“When we’re working with clients as therapists, the goal is to help people self-realize. We want to allow space for that when it comes to people realizing themselves in the context of their gender,” Talcott Broadhead, a licensed social worker in Olympia, Wash., told Campus Progress.

The informed consent pathway is not yet available in most areas — mostly just a few major population centres in the U.S. — and it’s accepted as a given that funding is entirely the individual’s responsibility.  It also doesn’t state here whether this process facilitates surgical access, and if that means the provision of doctors’ letters to surgeons (in which case, informed consent becomes not much different from a harm reduction model).

If you live in an area where funding isn’t available anyway and is heavily gatekeepered, the informed consent path is 100% better. But it’s also a model that favours the privileged and lucky.  Informed consent remains an elective process, without the use of a medical classification at all, and treats transition as entirely cosmetic, not as medically necessary, even if individual doctors involved realize otherwise.  And since billing is often tied to categorization, I’m not sure how that would work.  In any event, though, the voluntary nature has a tendency to undermine the necessity and validation needed for funding and widely-available access.

WPATH has revised its standards of care to be compatible with both informed consent and harm reduction models.

The harm reduction model.

What many in the medical field have been turning to is a harm reduction model, reducing the stigma as much as possible, while utilizing its strengths to make it available everywhere.  The results vary considerably by region.

The change made from “Gender Identity Disorder” to “Gender Dysphoria,” for example, is made to try to reduce the harm of the mental health stigma.

And then there’s “Transvestic Fetish”

If GID were listed tomorrow, there would still be people who seek counseling to deal with their sense of feeling out of place, and believing that changing their mind is easier than changing the body.  There would also still be people coerced or forced into treatment, especially youth, who are often not given any personal agency of their own.  And it would take time for medical professionals to become aware of this change, let alone warm to it.

One of the issues mentioned in Destigmatization… regarding the DSM volume, was that if GID is dropped from medical classification while Transvestic Fetish (TF) remains, this opens up the possibility that for anyone who crosses paths with the mental health system (and possibly the health system overall), TF could become a diagnosis of choice.  TF is also found in the ICD, as Fetishistic Transvestitism, F65.1.  This classification puts an emphasis on the clothes one wears, and implies a sexual motivation (which are besides the point and inaccurate, respectively), but it doesn’t take a lot of imagination to see how those who are adverse to transitioning people would take advantage of the existence of a TF-style classification and its exclusive status… and weaponize it.

The intent of the latest petitions may be to depathologize, but the result could very easily be a far more damaging pathology.

The way we think about mental health.

The discussion actually says a lot about the way we think about mental health, and the idea that “mental illness” is anathema. The movement to depathologize is based on a shallow understanding of what a diagnosis means, let alone a mental health one.  The assumption, of course, is that a mental health condition either automatically means insanity or else is a figment of a person’s imagination.  The stigma trans people face is more rooted in the public belief about what constitutes “normal” than anything that’s actually in the diagnosis itself, and that societal obsession with normativity won’t change just by reclassifying or declassifying anything.

In a way, the underlying motive is an injustice to the many people who are diagnosed with depression, autism, bipolar or social anxiety conditions, addictions, ADD / ADHD and more, some of whom travel in trans communities as well.  And it can easily translate to horizontal violence, if people choose to ignore this fact.

The spark of change.

There’s probably a reason that this latest movement reminds me of a match catching fire.  There is incredible potential there, but without the certainty yet of whether that power will warm or consume.  It’s all in how we use it.

The problem is that change essentially never comes easy.  There appears to always be some turmoil, at which point, society has to adjust, and figure out how to deal with it.  The question, then, is this: is society at a place where it’s ready to do so?  Are we at a place yet where the benefits outweigh the price that will be paid?  And have we adequately thought about ways to minimize the harm between points A and B?

I’m not satisfied that this is the case, especially when one looks at the question globally.  In some parts of the world, even what we have now is a hard sell.

And yet, it’s igniting now.  Now is the time for change, for many of us — perhaps it’s even long overdue.  Given that cautions in 2008 have gone unheeded, blowing out the flame is not the right thing to do, either.  So instead, I ask that people be aware.  Handle that flame with care.

A Solution.

Problems are easy to point out.  Solutions, usually not so much.  There is a possible solution, here, albeit one that doesn’t neatly solve everything.

Most of the risks outlined above hinge upon the existence of a medical diagnosis.  There is an apparent need for one, but that diagnosis does not have to be a mental health diagnosis.

If the petition were to focus on asking the World Health Organization to actively and urgently investigate the development of an alternate diagnosis in a way that would make transition not dependent on a mental health diagnosis — and which would involve some level of community consultation (probably the harder-sell request of the two) — well, this would be absolutely worth doing.

This solution doesn’t address the point about the way we think about mental health.  That would take a changing of hearts and minds, starting with our own.  But I’m not optimistic that that will happen in any near future.  Even just getting people to think about the political, medical, financial and social realities outside of Theirtown, USA (or Canada) is a bit of a stretch, at times.

But it is a solution.  And it could be do-able, in a way that maintains the spirit of the original petition, which says:

“This doesn’t mean that trans people should be excluded from the health system: pregnant women are not sick, but they have medical protocols and assistance. The same should happen with trans people.”

Pregnancy is covered at length in Chapter XV of the ICD, in classifications O00–O99: “Pregnancy, childbirth and the puerperium.”  Just in case anyone was wondering.