Mercedes Allen

Destigmatization Versus Coverage and Access: The Medical Model of Transsexuality

Filed By Mercedes Allen | April 04, 2008 10:00 AM | comments

Filed in: The Movement, Transgender & Intersex
Tags: gender dysphoria, gender identity, gender reassignment, transexual, transgender

Editors' note: Frequent guest blogger Mercedes Allen looks at the role of the medical establishment in relation to trans identity.

In recent years, the GLB community has been more receptive to (and even energized in) assisting the transgender community, but regularly asks what its needs are. One that is often touted is the "complete depathologization of Trans identities" (quoting from a press release for an October 7, 2007 demonstration in Barcelona, Spain) by removing "Gender Identity Disorder" (GID) from medical classification. The reasoning generally flows in a logic chain stating that with homosexuality removed from the Diagnostic and Statistical Manual (DSM-IV, the "bible" of the medical community) in 1974, gay and lesbian rights were able to follow as a consequence - and with similar removal, we should be able to do the same. Living in an area where GRS (genital reassignment surgery) is covered under provincial Health Care, however, provides a unique perspective on this issue. And with Presidential candidates proposing models for national health care in the U.S., it would obviously be easier to establish GRS coverage for transsexuals at the ground floor, rather than fight for it later. So it is important to note, from this "other side of the coin," how delisting GID could do far more harm than good.

Granted, there are concerns about the current classification as a "mental disorder," and certainly as a transgender person myself, it's quite unnerving that my diagnosis of GID puts me in the same range of classification as things such as schizophrenia or even pedophilia. And when the emotional argument of "mental unfitness" can lead to ostracism, discrimination in the workplace or the loss of custody and / or visitation rights of children, there are some very serious things at stake. But when the lobbies are calling for a reclassification -- or more dramatically a total declassification -- of GID, one would expect that they had a better medical and social model to propose. They don't.

Basic Access to Services

The argument for complete declassification is a great concern, because unlike homosexuals, transgender people - especially transsexuals -- do have medical needs and issues related to their journey. Genital reassignment surgery (GRS), mastectomies and hysterectomies for transmen, tracheal shave, facial hair removal and breast augmentation for transwomen... there are clear medical applications that some require, even to the point of being at risk of suicide from the distress of not having these things available (which is an important point to keep in mind for those in our own communities who assume that GRS is cosmetic surgery and not worthy of health care funding). And we need to use caution about taking psychiatry out of the equation: GID really does affect us psychologically, and we do benefit from having a central source of guidance through the process that keeps this in mind, however flawed and gated the process otherwise might be.

Declassification of GID would essentially relegate transsexuality to a strictly cosmetic issue. Without being able to demonstrate that GID is a real medical condition via a listing in the Diagnostic and Statistical Manual (DSM), convincing a doctor that it is necessary to treat us, provide referrals or even provide a carry letter that will enable us to use a washroom appropriate to our gender presentation could prove to be very difficult, if not impossible. Access to care is difficult enough even with the DSM-IV recommending the transition process -- imagine the barriers that would be there without it weighing in on that! And with cases regarding the refusal of medical services already before review or recently faced in California, Ontario and elsewhere, the availability of services could grow overwhelmingly scarce.

A Model of Medical Coverage

And then there is health care coverage, which often causes a lot of issues of itself, usually of the "not with my tax money" variety. But no one just wakes up out of the blue and decides that alienating themselves from the rest of the world by having a "sex change" is a good idea. Science is developing a greater understanding that physical sex and psychological gender can, in fact, be made misaligned, causing a person to be like a stranger in their own body. In extreme cases (transsexuals), this often makes it impossible to function emotionally, socially, sexually, or to develop any kind of career -- and often makes one constantly borderline suicidal. The medical community currently recognizes this with the existing medical classification, which is why GRS surgery is the recognized treatment, and why it (GRS, that is, and usually not things like breast implants) is funded by some existing health plans.

Canada provides an interesting model on this, as the nation has universal health care, and several provinces fund GRS with some limitations (British Columbia, Newfoundland, Saskatchewan and Quebec fund vaginaplasty, hysterectomy and breast reduction for FTMs, Alberta funds those plus phalloplasty, and Manitoba funds 60% of GRS-related costs). Funding may be restored in Ontario and gained in Nova Scotia, pending some ongoing activism.

This exists specifically because it is classified as a medical issue, and is treated according to the recommendations of WPATH. There are some idiosyncracies, of course -- a diagnosis of Intersex, for example, overrides a diagnosis of GID, and if someone is diagnosed as IS, the treatment is different (namely, GRS is not covered). Phalloplasty and metoidioplasty (FTM surgeries) are not covered in several areas because they are considered "experimental." Some provinces insist on treatment only in publically-funded hospitals, resulting in the rather unusual situation of Quebec sending patients to the U.S. or overseas, even though one of the top-rated (but privately-owned) GRS clinics in the world is located in Montreal. And many provinces direct transsexuals to the notoriously restrictive and obstacle-laden Clarke Institute (CAMH in Toronto) for treatment. Waiting lists can be long, and only a select few GID-certified psychiatrists are able to be a primary signature on letters authorizing surgery and funding. Still, the funding provides opportunity that many non-Canadian transsexuals would leap at within a moment, if they could.

Future Considerations

This possibility, remote as it may seem, is also out there for future American transsexuals. Both Democratic Presidential nominees have discussed developing a national health care program. The time is now for the trans, gay / lesbian / bisexual and allied communities to lobby insurance companies to develop policies that cover GRS. The time is now to lobby companies to seek out group policies for their employees with such coverage, and with more emphasis than the HRC's impossibly easy Corporate Equality Index (CEI), in which providing mastectomies for breast cancer patients qualifies as "transgender-related surgeries." The more prevalent health care coverage is for transgender persons when a national program is developed, the more effective the argument is that a national program should include it. Certainly, it will be much harder to lobby to have it specifically added later.

This possibility, remote as it may seem, exists because of the current classification. Even some existing coverage of and access to hormone treatment is called into question in a declassification scenario. And certainly, where coverage is not available, it is the impoverished, disenfranchised and marginalized of our community - who quite often have more to worry about than the stigma of mental illness - who lose the most.

So a total declassification is actually not what's best for the transgender community. Too, if anyone had been thinking that proclaiming that "transsexuality is not a mental disorder" would magically change the way that society thinks about transfolk, then they are spectacularly and embarrassingly wrong.

The Question of Reclassification

At some point in the future, I expect that we will find more biological bases for GID, and that transgender people will perhaps become a smaller part of the larger intersex community (rather than the other way around). Recent studies in genetics have demonstrated some difference in chromosomal structure in male brains versus female brains, and the UCLA scientists who conducted the study have also proposed that their findings demonstrate gender dysphoria as a biological characteristic. Other studies into endocrine disrupting chemicals (EDCs) could open new discoveries related to variance in gender correlation. A reassessment of GID is almost certainly something that will be on the medical community's table at some point in the future, but it definitely needs to be in the DSM somewhere. But for now, GID is not something that can be determined by a blood test or an ultrasound, and is not easy to verifiably place with biological conditions. The science is not there; the evidence and solutions are not yet at hand.

This is why reclassification is not yet feasible. It's difficult to convince scientific and medical professionals to move a diagnosis when the current model is workable in their eyes (even if not perfect), while the alternatives are not yet proven, cannot be demonstrated as more valid than the current listing, and no modified treatment system has been devised or proposed. Any move of the diagnosis is not likely to be very far from the current listing, and from the literature I've seen, I doubt that those in the community who advocate to changing or dropping the current classification would be happy with that. For some, even listing it as a "physical disability" could constitute an "unwanted stigma." I have heard one WPATH doctor suggest the term "Body Morphology Disorder" - for many, I suspect, this would still be too "negative."

"Unnecessary Mutilation"

That's not to say that complacency is an answer. In the face of conservative reluctance and new activism on the left by the likes of Julie Bindel, claiming that GRS is "unnecessary mutilation," we need to demonstrate the necessity of treatments, in order to ensure that any change would be an improvement on the existing model, rather than a scrapping of it. This is, of course, something that affects a small portion of the transgender community in the full umbrella stretch of the term, but the need for those at the extreme on the spectrum is profound -- not simply a question of quality of life, but often one of living at all - or at least a question of being able to function emotionally, socially, and sometimes sexually. If and when a reclassification occurs, it will need to be this sense of necessity that will determine the shape of what will be written into any revision.

The solution isn't to destroy the existing medical model by changing or eliminating the current classification of "Gender Dysphoria." Collecting data, demonstrating needs, fighting for inclusion in existing health plans, examining verifiable and repeatable statistics on transgender suicide and success rates and other information relevant to the medical front is where medical-related activism should be focused, for the moment.


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Mercedes,

Your posts are always so fascinating; I learn quite a bit from them. I've made sure to share this one with a few e-mail lists that I'm on. As a gay man, I didn't know a lot of this. Thanks for educating me - and everyone else I shared it with.

Mercedes, this is an awesome post!

Granted, there are concerns about the current classification as a "mental disorder," and certainly as a transgender person myself, it's quite unnerving that my diagnosis of GID puts me in the same range of classification as things such as schizophrenia or even pedophilia.

I think your argument is bulstered by the fact that people in Western culture have a general unease around the topic of mental illness in general. First off, there is nothing inherently wrong with having schizophrenia. It is a disease, much like Parkinson's or diabetes are diseases. Why is there no stigma around outing oneself as a diabetic?

My family has a long history of mental illness. My dad is bipolar and his sister was schizophrenic. Thankfully, our understanding of these diseases has come a long way in the last 20 years and people can manage their diseases.

There's nothing wrong with having a mental illness. But your argument just proves that mental illness in general needs to be equally covered by a national health insurance plan. Right now, most people are lucky if their health plans cover mental health services. Consequently, this is an opportunity for coalition building. Because there are already lots of people fighting to have mental health care covered under a national health care policy.

Besides . . . aren't we all just a little bit crazy?

Thank you for the great posting! To bad for most of us its a personal expense to take the leap to change ones self to what you should look like.Medical for the average person will not cover sex change in any form unless you live in the few places or work for a very enlighted company.It's pay as you go so for many its a long time in coming to look the look and not just have your mind set striaght that yes your in the wrong body kiddo.

But your argument just proves that mental illness in general needs to be equally covered by a national health insurance plan. Right now, most people are lucky if their health plans cover mental health services.

That is true. I'd sort of taken it for granted that under a health care plan, there would be similar coverage of treatment of mental illnesses in general as there is in Canada (i.e. psychiatrist visits and physical interventions covered, some provision for medications through most health plans and social programs, etc.).

I do agree with coalition-building.

I used to work for one of those "enlightened" companies, it rated 100% on the HRC list, but it still didn't cover GRS in either the medical insurance or even with their short term disability insurance (for recovery).

I think you will find that is the rule in most places. As far as I know, none of the major insurers cover transition costs, so unless a company is funding some sort of private insurance, it just isn't going to be covered.

The interesting thing is, the company did cover my hospitalization and costs for my bi-polar. So in one sense, having a mental condition was treated as more 'normal' than being transgendered.

No matter what though, western society in general is just not prepared to accept transexuals.

The whole situation is a mess, with insurance and health care payments too dependant on jurisdiction.

So let's get back to basics.

Our best guess of the causation of transsexuality is the so-called "brain-sex" model. That's not proven beyond doubt, but as we have no other model for causation with any credible evidence at all, we really have to go with it.

Then we should decide whether to have both a physiological entry, and a mental health entry. For example, a diagnosis of vaginal dysgenesis (ICD 752.49) will often be associated with Gender Dysphoria Not Otherwise Specified (DSM-IV 302.6). The surgical treatment for the first will usually cure the second.

Now whether Transsexuality should be considered under ICD 742 (anomalies in nervous system) or ICD 752 (anomalies of genitalia) I don't know.

I do agree that before taking it out of DSM-IV, it must be added to ICD. This should be part of a complete re-vamp of treating and diagnosing Intersex conditions, and the consequent psychological problems having such conditions can cause.

What we should *not* do is try to band-aid things in order to try to comply with legal requirements not based on medical reality. There's been too much of that in the past, which has led to this mess. Get the medical stuff accurate, then coerce the legal bits to match, not the other way round.

Mercedes,

Thank you for this article; it is the first one that I have seen which brings forward the conundrum and issue that is lurking behind “GID” and “Transsexuality.” Over recent years individuals in the medical community have sought a better understanding of gender and the relationships to sexuality. Starting in the 19th century, the incursion into both neurological and psychological medical knowledge had set some not so accurate parameters and definitions regarding normality and deviancy. It was one foot buried in a medieval past and the other trying to gain footing in the future. The later half of the 20th century provided some clues to what is now the expectation of an explosion into exposing what many scientists and others fear.

When Transsexuality was given definition, the medical community was careful to exclude it from any physical anomaly that could be substantively linked as a cause. Hence, it was placed in the books as a mental condition and out of reach by general medicine, care and mitigation. Not until Harry Benjamin in an experiment was there a standard of care promoted. It too was carefully contrived to not overstep the medieval foundations of prejudice or the fears of the medical community.

In recent days we are seeing a retraction from the public via disinformation and an organized movement to characterize the GID/Transsexuals as a danger. And at the hand of others who would use it for political maneuvering and gain in alliance with very powerful interests. The medical community, both neuroscience and psychological, can see the shifting of sentiment as the public perceptions shift. Even though cutting Bioneurological research is revealing evidence in brain development and formation to substantiate the cross gender experience we as Transsexuals have stated all along. Why the continued degradation and vilification of the Transsexual and retraction and rescinding of protections? Some factions are calling for us to be driven from all possibility of medical care or remediation. There are those who are seeking validation and control of society at the expense of those most vulnerable. They not only have the power and influence of the industrial-chemical-pharmaceutical industry, but have gained internal position and can access its resources. They too realize the huge liability the “Intersex and Transsexual” community places upon those who knew what was happening, and did nothing, understanding an explosion is about to level society.

Your article shows the conflict, and now many will be able to see how our lot, and fate, will play out.

classification of the condition as a mental disorder is just innaccurate.

the transsexual condition certainly does cause stress and anxiety...or GID. and dealing with a society at odds with the condition and the transition process absolutely causes additional stress for which a trained counselor can certainly be beneficial. the condition is very real...and the cure is physical and medical. transsexualism is a birth defect and should be recognized and treated accordingly. if an individual is happy with the condition and does not consider it a defect, that individual does should not be forced to seek treatment or full surgical intervention.

Just Jennifer | April 6, 2008 3:57 PM

There is a simple answer to this entire issue. It is the Harry Benjamin Syndrome model, which recognizes that what has traditionally been known as transsexualism has a physical basis, is not properly considered a mental health problem, and that it is NOT a form of transgender.

http://www.harrybenjaminsyndrome-info.org/

In truth, surgery is not the right choice for everyone, and there are plenty of examples of people who should not have had it. Implying that people with HBS ae the same as crossdressers and such is a big part of the problem.

diddlygrl | April 7, 2008 1:41 AM

HBS Is a crock.

Whether there is a physical cause or not, the mental stresses of the condition is such that psychological intervention is necessary. It is also necessary to help guide those who might suffer from a lesser degree of GID to a outcome that will satisfy their dysphoria. There may be those who, at some point feel they need to transition, when what they really need is to find an outlet for their feminine side.

At a time of crisis only a trained counselor can determine to what degree a person may need to go in order to achieve relief.

HBS is just a sham perpetrated by those who refuse to accept that we are all suffering in some degree from a common condition. They fear the "stigma" of being transgendered and part of the queer community, and wish to try and separate themselves from the "freaks". You know why the most strident HBS'ers claim that a transwoman who is lesbian doesn't belong? Because they are afraid and disgusted by their own "queerness".

Wonder how many of them was into gay bashing back before they finally faced up to their own queerness?

Okay Bil, I know, you really hate how these discussions turn into rants and cat fights when the subject of HBS come up. It just gets my dander up. Is some redneck going to care whether they are "HBS" or not? It will make no difference at all to the person beating the crap out of them because they are "queer".

I really get a charge out of the rehash that seems to continually be played out regarding the issue of Transsexual vs Transgender, and mental and physical disorder. Aside from the fact that neuoological differences have been established and that there has been no solution for those so diagnosed, except to have SRS, there is an important point to be recognized. For the Transsexual it is not about sexual orientation, social placement, or what cloths to wear. It is about having the right body! All of the other things are side issues and encumbrances to living, but the skin we live in is number one.

For me being Transsexual is about having boobs, and a vagina, the body. The stress and anguish of having something hanging between my legs was maddening. Surgery, and it all went away. I feel normal! Gee, how come all of the therapists and counselors (14, including PHS) could not achieve that result? As for sex and queerness? I would suppose that could have a lot of intersecting causation and interaction. However, GID /d Transsexuality cannot be solved by living in a dress, living a cross-gender life, or by some form of sexual expression. It is too bad that medical treatment has not progressed since Harry Benjamin took a stab at helping a few societal freaks. The way things are going today, we may see Aversion Therapy, incarceration, the “IRON MARY”, and eradication again being the prescription to solving the whole issues of “Trans-anything.” Do I hear applause? Barney, Ted, Joe…sit down.

I think there are degrees of GID, I was like you Stella, once I had surgery my dysphoria disappeared along with that thing between my legs.

But I know transpeople who are non-op, or who have only a slight degree where just the expression of their femininity helps them deal with their dysphoria. Each of us is unique, and deals with their condition in their own way depending on the severity of it.

We who have had to resort to surgery and full transition to releive our dysphoria do not have the right or the ability to tell another that they do or do not suffer from the same issues that we have. We can not get into their heads and say, "oh you are not suffering like I was, so you can't be trans.". That is as bad as another post-op telling me that I do not fit because I am lesbian.

As far as the studies showing a possible nuerological causation, well they are preliminary, and deal with such small research groups, that the general medical community is a long way from accepting them. Down the road, when and if more corroborating studies are done, maybe things will change. I am not going to hold my breath though.

Thanks for the clarification. As Mercedes eluded to, there is a growing sentiment out there that the whole idea of transitioning is wrong and needs to be stopped. Why I stated,"For me being Transsexual", as I was trying to respond to those who diminish the need for a surgical option. I do understand the degrees and varying needs, and do not want to berate others in any way. That is, except those who would use their power, authority, and influence to take away the rights of others.

Well, diddlygrl, you are certainly entitled to your opinion. But, I fear you are reacting without really considering facts.

First off, HBS is simply a new model that is based on better knowledge. We know a lot more now than we knew when a lot of the current models were developed.

It certainly does not deny that mental stress results from having a brain that does not match ones body.

But your comments point up why HBS is not a form of transgender phenomena, and why there needs to be strict differentiation.

Transgender is an artificial political/social construct that is designed to cover certain behaviors that have nothing to do with being HBS, or to use the older term, transsexual.

You speak of "outlet for their feminine side." That, of course, is straight out of the "Chuck 'Virginia' Prince" playbook. And it is as silly today as it was when he first coined it. Being HBS, or transsexual, is not about having "a feminine side" that needs an outlet. It is about being someone who has a brain that is not compatible with one's body, and about seeking to correct this problem.

If you don't feel the need to actually correct your body to match your brain, then you are not HBS. It is not a matter of degrees. It is a matter of need, versus not having that need.

And not accepting a lie is not a sham, it is simply reality. There is no common condition. There is no commonality between crossdressers and people with HBS. They are simply two completely unrelated phenomena. And the idea of being "queer," like the concept of "transgender" is an artificial construct. You are self-loathing, and in response, you embrace that, and denigrate yourself as a defense mechanism. And HBS has nothing to do with sexual orientation. There is a person who falsely claims to be part of the same movement who does take that position, but that person insists on the improper form, "Harry Benjamin's Syndome." Medical protocol is to not use possesives in naming diseases. They are not owned by individuals, but are named in honor of that person.

If you wish to identify as "queer," that is certainly your right. But it is NOT your right to impose that self-insult on to others.

And as far as "rednecks" go, I was born and raised in the South. I had no problems during and after transition. But then, I wasn't seeking to disrupt, I was seeking to fit in.

Your mileage may vary....

diddlygrl | April 7, 2008 5:40 PM

Actually, I wear the term queer quite proudly, just as I do lesbian. As with others, I take a term that has been used in a derogratory way and "take back the power". I am as queer as a thirty dollar bill.

It is not self-loathing that motivates me, it is the injustice and prejudice I see happening to my brothers and sisters across this country and this planet. Transgender is not a political or artificial construct, it is a term used to cover those who are gender varient/non-conforming. It is a psychiatric and psychological term in present usage. Like queer, it has been used in the past, and by some in the present, to stigmatise those who do not conform to the gender normative model.

Guess what, HBS fits under that term no matter what. Look it up, or better yet, go ask a psychitrist or therapist.

I stand by those who fall within that group, transexual, cross-dresser, genderqueer, drag queen or king. We are all one, along with the rest of the queer community. I can not and will not separate myself by making up a syndrome and playing gatekeeper telling people that they are not "trans" enough to fit. It took me awhile, and I have been through a hell of a lot to get to this place, but I am here, I am queer and I am proud!

Well, that's all fine and good. If you want to be "queer," that is certainly YOUR right.

And yes, "transgender" is quite artificial. It was made up by Chuck "Virginia" Prince to describe those, like him, who wanted to live full time as women without surgery. It was later adopted as a political term. It has absolutely zero objective meaning. And by your definition, it does NOT include me, and other transsexuals, as we conform to our gender (female in the case of myself, and other MTFs, and male in the case of FTMs). Sorry to break this to you, but I very much conform to the gender normative model. So, I guess that shoots your little model down in flames.

You see, that is the problem with social/political constructs like that. They are not objective terms, but are subjective dogma. And when someone comes along who challenges your dogma, well, you have a problem.

And no, "transgender" is not a psychiatric or psychological term. It would have to have an objective, accepted, standard meaning to fit that category. But it does not have one.

Now, you can stand by whatever you wish, but that does not change reality. There is no "one." You want to impose your paradigm on all, but that only works if people are willing to comply. No one is telling you to separate yourself. Trust me, I don't consider you to be one with HBS. Quite the contrary...I agree, you fit well within the "transgender" model. Now, as I said, you have learned to deal with your self-loathing by embracing it. And hey, whatever floats your boat.

But, please, don't try to force me under your umbrella. I'm not going to play nice, and obey. And you are just going to look silly standing there trying to tell me what I am, or what I can't be.

I am still having trouble understanding how removing SRS from the DSM will increase the ability ob a Govt subsidy. To me, no DSM listing meanrs the disorder is not identified and then should not be covered.Many women understand stretch marks which are not in the DSM, and guess what-- they are not covered.
To go to the legislature and identify yourselves as wanting covered transurgery will, as I have bee saying for 12 years now, will not fly.