This article has been a long time coming. Each time I've 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, 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 and obvious 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 DentedBlueMercedes. Permission is given to circulate this article, provided nobody else claims ownership of it.
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19 Comments
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Wonderful article Ms. Allen, and a refreshing departure from the common trend of trans medical students just criticizing the researchers without a more satisfactory solution to the issue.
I have one question though. Although I agree with your proposal to seek a diverse outreach strategy to bring everyone to the table in adopting a new model, how do you propose to get around the problem of the current "activist"/"consultant" monopoly who will be eagerly waiting with wide eyes and waiting pockets to jump in and speak for all transpeople, thus preventing the truly diverse approach ???
The way I see it, such a diverse model will be next to impossible to achieve if the same trans consultants and activists ONLY are allowed to influence such a study in the usual biased and overgeneralizing way.
I suppose that if we continue to put the cart before the horse then ultimately we will just be doing business as usual without any results of true inclusion and change.
Thank you for your time.
Everyday Transperson | January 6, 2009 4:20 PM
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I suppose part of that depends on what constitutes the "current activist / consultant monopoly." Speaking from experience on a local level, I'm always prepared to welcome new voices and perspectives (although I do take issue with it when the occasional person comes in with the "I should be speaking for us but you should not" attitude). Often what happens, though, is that preferring to remain stealth, many choose to not become involved with advocacy at all but to criticize those who do for "speaking for" them. The solution to that is simply for more and diverse people to get involved.
OTOH, in areas where there are cliques that actively do discourage people with different ideas from getting involved, I'm not all that experienced in that kind of environment. But there would still have to be opportunities and invitations made on the research and collection side to all persons, regardless of clique or perspective.
Mercedes Allen | January 7, 2009 1:12 AM
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I suppose part of that depends on what constitutes the "current activist / consultant monopoly." Speaking from experience on a local level, I'm always prepared to welcome new voices and perspectives (although I do take issue with it when the occasional person comes in with the "I should be speaking for us but you should not" attitude). Often what happens, though, is that preferring to remain stealth, many choose to not become involved with advocacy at all but to criticize those who do for "speaking for" them. The solution to that is simply for more and diverse people to get involved.
OTOH, in areas where there are cliques that actively do discourage people with different ideas from getting involved, I'm not all that experienced in that kind of environment. But there would still have to be opportunities and invitations made on the research and collection side to all persons, regardless of clique or perspective.
Mercedes Allen | January 7, 2009 1:13 AM
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Thanks for linking the info about androgen receptor variants. I am a generalist at the moment and often only run literature searches directed at ongoing cases.
I agree with the approach of establishing a new diagnostic category before abolishing the GID DSM category. It's the only sensible approach for the current US health care delivery model.
I suspect that some form of neurologic-endocrine-psychological diagnosis will be needed for a long time, because the patient seeks treatment for expressed discomfort with assigned gender, and diagnostic criteria should make that discomfort primary over all other findings. Treatment should be available to all who have a sufficient degree of discomfort and strong desire to change from the assigned gender, whether or not they have a particular biochemical marker. *You treat the patient, not the test!* I suspect that there are multiple genetic and environmental "causes", and we likely won't know when we have identified all possible biochemical pathways.
NancyP | January 6, 2009 10:26 PM
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I am quickly coming to the conclusion that a trans-appropriate (i.e. not intentionally obstructive) psychiatrically-linked diagnosis is not likely to be available to us in the long term, or certainly not in the way that we're currently accustomed to.
Mercedes Allen | January 7, 2009 1:21 AM
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Until the stigmatization of gender varient behavior is done away with, there will always be the need for some type of psychological intervention and therapy when it comes to transexualism.
That same stigmatization is what leads the medical profession, as well as psychitrists and psychologists, to come up with some of the crazy ass bull that they do to try and explain what is "wrong" with us. Our own self-loathing and pent up trans/homophoobia just helps reinforce these wrongheaded diagnosis, treatments and explanations.
If I had of 'come out' when I was young, I would have most likely been diagnosed as a 'transvestic fetishist', and put into an aversion therapy program to 'correct' my paraphilia. Luckily I read about it in my parent's psychology books and was forwarned about my "illness", and the "cure", thus avoiding the whole shebang. It disturbs me to learn that this particular diagnosis is still on the books, and is still being used against transpeople to try and delegitimize their condition.
It doesn't matter what scientists or their studies say now or in the future. As long as transexualism is seen as some kind of paraphilia or psychosexual deviation, and considered by society in general as something that is 'immoral', or 'perverted', we will always be treated as second class citizens and given the short end of the stick.
diddlygrl | January 6, 2009 11:46 PM
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guess what diddly .. apt name by the way
the SOC is not there to prevent people doing something, it is there to help people do something properly. If a person wants to skip the SOC to avoid the psychotherapy and the RLT and the other mechanisims that are in place to prevent people from making huge unchangeable decisions in their lives that will affect their ability to function in society, they can..
... and they do!
... and many of them whine and moan that there should be a law to help them keep their jobs, to stop people discriminating against them and worst of all, the whine that the medical community and the SOC are just more crazy ass bull, and that everyone who says anything to the contrary are simply being bigots and transphobic.
It's always someone else's fault ..
http://tgnonsense.wordpress.com/2009/01/06/tg-failure-of-the-real-life-test/#more-433
Leigh | January 7, 2009 11:28 AM
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Aw, come on now. I tried the "right way," but it wasn't for me. Mostly, I couldn't stand educating a person to whom I was paying $150/hr, nor could I afford it. Insurance in Indiana doesn't cover any treatment either psychological or medical. Then I lost my job because I was trans, and I had to do it the other way. I ended up liking that much better, and though it has taken longer than I am sure it would have were I still making $30,000, I am much happier about the course of treatment.
It's about choice for me. If I hadn't the choice to go ahead myself, I'd probably be one of the statistics. For those who can afford it or like to follow prescribed directions from recognised authority figures, following the SOC and embracing the pathology paradigm is great. For those who can not afford the prescribed route or for a host of other reasons do not or can not follow that path, there is the other route.
Right now, in our system, going the "right way" is impossible for a sizeable portion of the community. If you do not have access to a respectful workplace, a middle-class income, and a trained and supportive medical network you are not able to walk the correct path.
So, please don't assume there is a righteous group and then a bunch of whiners. People do what they can with what they can get. If you were able and willing to follow the SOC then great, but don't put those of us down who don't.
Melanie Davis | January 7, 2009 12:25 PM
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BRAVO !!
And this goes to the very root of what I was trying to express in my original post.
How can trans folks rise up and go about their transitions the "right" way (often dictated by some middle to upper class income trans consultants, activists, and celebrities) if many are not afforded the opportunity to achieve the same incomes or recognition as these successful trans folks have achieved ???
I agree with Ms. Davis. The transgender community currently has a little cottage industry in place, formulated BY middle to high income "esteemed" trans folks, designed FOR other middle to high income tran folks. And of course this system is adopted from the capitalist model of "transition properly based on the ability to pay" which is in and of itself discriminatory and classist.
So what can we do ?? Well, none of the trans activists seem to be too eager to pick up a picket sign to the front doors of corporations. After all, why should they ??? Doing so would cut out their "consultant" incomes from the very companies they do business with who contribute to the income disparity that trans folks experience.
So again, I agree that to solve the "right" way to transition model, you must first adopt a system to give everyone in the transgender community an equal opportunity to pay, be involved and be heard and not to be labeled as an outside "critic" to the rich elitist circle.
Thank you for your time.
Everyday Transperson | January 7, 2009 1:28 PM
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the operative phrase was
"... and many of them "
your results may vary
Leigh | January 7, 2009 2:08 PM
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The inability to pay for services rendered by medical professionals is not limited to trans issues. There are many thousands if not millions of us that do not have access to medical care based on the inability to pay. I myself do not have any medical insurance and neither am I wealthy enough to pay for medical services out of pocket. That system is unique to America and is part of the problem related to all medical issues suffered by the poplace, so why do you expect that trans people (many of which wouldn't have SRS if it was FREE by the way), should be given a free ride by corporations or the government?
How much more should the corporations pay for? Many of the large ones are failing under the strain of competition from abroad where even basic necessities of life for employees are not provided for, and the medium to small corps are not fairing much better weighed down as they are by state and government controls. The more you pile the weight on, the harder you will find it to get a job thats worth having. It's a vicious circle and entitlement thinking doesn't help anyone.
The "community" make out like SRS should be an entitlement when in fact it is elective and many trans folk prefer to spend their money to buy a car or house before they will give a penny toward paying for their surgery. Thats the difference in my mind between those transsexuals that are serious and committed, and the rest of the "community" that would rather whine and moan that they are excluded and discriminated against.
There are hundreds of thousands of post op women out there and very few are from the "rich elitist circle". Most of them, like myself, went without other things in life to get what they felt was most needed.
Leigh | January 7, 2009 2:35 PM
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"many trans folk prefer to spend their money to buy a car or house before they will give a penny toward paying for their surgery. Thats the difference in my mind between those transsexuals that are serious and committed, and the rest of the "community" that would rather whine and moan that they are excluded and discriminated against."
So, are you inferring then by your comment that one must completely ignore all other life's wants and needs to focus SOLELY on a surgery to be considered as an authentic "serious" and "committed" transsexual (conditional and elitist thinking)?? If not, then as the popular elitist opinion goes "then you are not one of us"................ Isn't that how the system works ??
Please............
Additionally, how many folks in the greater American medical community are required by doctors to obtain two letters of OK from their therapists to get a heart surgery or a kidney transplant ?? So there can really be no comparison.
Lastly, "Entitlement Thinking" seems to be the new ideology coming out of corporate HR departments these days, learned in part from a few trans "consultants" who think that since they had to stuggle themselves, then everyone coming up after them should also struggle, sort of "earn your place like the rest of us and then you are in" type of thinking........... "Entitlement" is just another fancy corporate term to say KEEP OUT !!
We are talking about rights here, not about protecting corporate mismanagement !!! By the way, you state that you are post operative, well how much have you remembered where you came from and reached back to help those coming up after you ???
To fully understand and appreciate discrimination and exclusion you have to experience discrimination and exclusion yourself and then perhaps people may be given a more respectful title than "Whiners and Moaners".........
Thank you for your time.
Everyday Transperson | January 7, 2009 4:34 PM
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"So, are you inferring then by your comment that one must completely ignore all other life's wants and needs to focus SOLELY on a surgery to be considered as an authentic "serious" and "committed" transsexual"
Not compleatly, but the urge to correct incongruence must be stronger than the urge to go shopping.
"how many folks are required by doctors to obtain two letters of OK from their therapists to get a heart surgery or a kidney transplant ?? "
Those letters, as you are well aware, are required by the surgeon that will perform the operation. Since surgeons are not trained as psychiatric professionals they cannot perform a diagnosis of transsexualism on an individual. In contrast, a medical doctor that is trained in heart or renal functions has no need of such letters since they can diagnose a patients condition directly.
"We are talking about rights here, not about protecting corporate mismanagement"
We are not talking about rights here because you have no willingness to listen to anyone else's rights but your own. Rights have no meaning when they only work for some at the expense of others.
What exactly gives you or anyone else the right to tell employers who they can hire or fire? What about the rights of the owners of those businesses to not have to be forced to hire people they don't want to work with? Why should an employer have to pay for someone to have SRS? Why is it their problem? You talk as though you should have more rights than the owner of the business does about how to run their businesses. Not ALL corporations are mismanaged, in fact very very few are.
"you state that you are post operative, well how much have you remembered where you came from and reached back to help those coming up after you"
You know what... most real transsexuals need very little help and almost no support to get through this. It's not that difficult when the need is inate. It becomes way harder when it's not and if it's not then all the support in the world will not change anything. I am reaching back right now... is anyone listening ? .. no.
Leigh | January 7, 2009 6:06 PM
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I wouldn't expect it wholesale, but in areas where there is insurance coverage of medically-necessary procedures -- whether state-directed or company group policies -- I would expect that there be coverage available for the sake of those who really can't live without the surgery.
Should they be able to fire who they like because of a racial prejudice? Or because the employee is of a different faith? Or because they're a woman? How is this different?
Mercedes Allen | January 7, 2009 6:54 PM
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Yes! .. where there are insurance policies in effect, absolutly the surgery should be inclusive. This is something the employee is partly paying for and to go one step further I would agree that ALL insurance policies should cover SRS where a dignosis has been established with the proper letters.
As for the right to hire and fire, it should be up to the employer. Prejudice is not going to go away. We already have laws that make it illegal to fire someone for reasons you mention, but it still happens .. all you have to do is prove it. Most employers these days do not engage in discrimination based solely on race, color, gender etc; but it is not discrimination in my opinion, to deny a job to certain types of people based on a lot of things an employer might notice about that person during an interview. The assumption that the candidate got turned down because of their gender presentation is not always the case. They may THINK thats what it was but that doesn't make it so. In the same way a black person might think that the white interviewer was being prejudiced to their color, but that may not be true either. In most every case, the reason a person is not hired is never given to a candidate, but to jump to the conclusion that it was a purely discriminatory action is just not valid. This is one reason ENDA will not do anything for you, because the burden of proving discrimination is too great. You also run the risk of ENDA backfiring in that employers may single out trans persons to not be hired to avoid any later actions that may come about from hiring them in the first place. One has to be be careful what one wishes for.
It is an easy question you ask but not a cut and dried answer simply because there are lots of variables involved in hiring. However, I think that if a particular employer doesn't hire someone and they think that it's due to discrimination of that person's lifestyle, that person should consider themself lucky that they didn't get the job where they would no doubt be miserable anyway.
So no, I don't believe that the rights of employers are any less important than the rights of employees, for any reason.
Leigh | January 7, 2009 9:11 PM
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The word rights gets bandied around too much without understanding the notions behind it.
A quick refresh on Social Contract and the origins of rights might be helpful.
A business is not a person. It does not have the same rights as a person. It has Obligations Of Duty however.
A person in a role in business, government etc has personal rights and obligations of duty.
They can choose who they spend time with in their own time, freedom of association, but if they only sell food to the blondes they fail their obligation of duty, to the customers, to the shareholders etc.
A Jehovah's Witness doctor has the right to refuse a blood transfusion for themselves, its their person, their personal right to bodily autonomy and freedom of religion. But they have an Obligation Of Duty not to make that choice for their patients and so cannot allow a non-witness child to die of bloodloss.
There is a clear line of demarcation between these.
Its about how in order to validly benefit from the advantages of an egalitarian system one is obligated to that system.
The freedom to punch ending at anothers freedom to not be punched without consent.
More than anything else the citizens of modern western democracies really need to start to rediscover the Enlightenment Philosophies upon which Modern Western Democracies are entirely predicated.
Battybattybats | January 8, 2009 9:25 AM
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Yes batty you are correct in what you say, and if we all lived in a perfect world ... and thats the rub as they say.
Leigh | January 8, 2009 11:28 AM
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Huh? What do you mean 'perfect world'? There is nothing utopian in what I said. Those philosophies define what is right and what is wrong based on simple precepts. Now the precepts may be wrong or not, the reasoning wrong or not. But a 'perfect world' is not remotely required! People have the capacity to do the right or the wrong but the right remains right and the wrong wrong so long as both precepts and reasoning are correct.
We do not need to live in a perfect world (or one any different from exactly as it is right this instant) for what I said to be true or for doing what is right by those notions to have practical value.
And as I said, "More than anything else the citizens of modern western democracies really need to start to rediscover the Enlightenment Philosophies upon which Modern Western Democracies are entirely predicated." This would result in the current world becoming imediately better for every single individual who gains such an understanding and acts accordingly.
There is no 'rub'. No capacity remains even to fall back on 'well the world isn't perfect' as some sort of excuse to justify mainiatining an injustice without requiring utter nonsense replace logic.
Battybattybats | January 9, 2009 11:07 AM
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I appreciate the red pill that Leigh is offers is a difficult one to swallow, but what she is saying rings so true for me. I am not taking sides - there are lots of good points and arguments here. I just want to offer my bit of advice: I am pre-op but I have never had the thought enter my mind that I cannot do this. If someone objected and said it's impossible, I would laugh. Honestly, it's true - I don't know how I arrived here in my life - as they say, shite happens, but my resolve is something that comes from my heart, my body - it has nothing whatever to do with anything I heard or read or was being offered or refused by any agency or government. I just know what I am and where I am going.
Here is a short passage that has influenced me greatly. A local writer gave it to me, as in - he asked me if he could give me something and then he wrote this out in pen on a piece of paper while I waited. I hope that it inspires some of those who need it:
William Hutchinson Murray (1913-1996) from 'The Scottish Himalayan Expedition.' (1951)
My writer friend actually wrote 'W. Goethe' for the author of the quote, but I found out later that it comes from the source above.
There is also a saying that may be Confucian, but I'm not sure. Paraphrasing: "Even the longest journey begins with one step." This seems simple but if you live with it for a lotta years, you realize that the first step must be with absolute convicion, or the journey never really begins in earnest. I don't believe you can learn these things in any easy way. When someone is describing a difficult journey and there is a truth to it, you can feel the truth in your bones. That's how I know that the pill Leigh offers is red.
Brielle | February 16, 2009 2:26 AM
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