#did transmedicalism actually win? | Explore Tumblr Posts and Blogs

star-anise · 4 years

Text

An ask I got recently:

hi so i’m a transmed and i’m not sure if you’ll answer this because of that but i saw your post about transmedicalism and was wondering if you could expand on that? you seem like a genuinely kind and judgement-free person, thank you darling x

My response:

Heh, you call me “judgement-free” and ask for my opinion on a topic I’ve formed a lot of judgments about… I get it though, I’m not into attacking people for what they believe so much as providing FACTS. As a cis queer, my insight into transmedicalism isn’t really about the innate experience of trans-ness so much as using my education and professional experience to talk about social science research, diagnostic systems, and public health policy.

This ended up really long, so the tl;dr is, I think transmedicalism as I understand it:

Misunderstands why and how the DSM’s Gender Dysphoria diagnosis was written,

Treats the medical establishment with a level of trust and credibility it doesn’t deserve, at a time when LGBT+ people, especially trans people, need to be informed and vigilant critics of it, and

Approaches the problem of limited resources in an ass-backwards way that I think will end up hurting the trans community in the long run.

TW: Transphobia; homophobia; suicide; institutionalization; torture; electroshock therapy; child abuse; incidental mentions of pedophilia.

So first off I’m guessing you mean this post, about not trusting the medical establishment to tell you who you are? That’s what I’m trying to elaborate on here.

I have to admit, when you say “I’m a transmedicalist” that tells me very little about you, because on Tumblr the term seems to encompass a dizzying array of perspectives. Some transmedicalists believe in what seems to me the oldschool version of “The only TRUE trans people suffer agonizing dysphoria that can only be fixed with surgery and hormones, everyone else is an evil pretender stealing resources and can FUCK RIGHT OFF” and others are like, um… “I have total love and respect for nonbinary and nondysphoric trans people! I qualify for a DSM diagnosis of dysphoria but that doesn’t make me inherently better or more trans than anyone else.”

Which is very confusing to me because according to everything I’ve learned, the latter opinion is not transmedicalism. It’s just… a view of transness that acknowledges current diagnostic labels and scientific research. It’s what most people who support trans rights and do not identify as transmedicalists believe. But I kind of get the impression that Tumblr transmedicalism has expanded well past its original mandate, to the point that if a lot of “transmedicalists” saw the movement’s original positions they’d go “Whoa that’s way too strict and doesn’t help our community, I want nothing to do with it.”.

Okay so. Elaborating on the stuff I can comment on.

1. DSM what?

The American Psychiatric Association publishes a big thick book called The Diagnostic and Statistical Manual of Mental Disorders, called the DSM for short. This is the “Bible of psychiatry”, North America’s definitive listing of mental disorders and conditions. It receives significant revision and updates roughly every 10-15 years; it was last updated in 2013, meaning it will likely get updated sometime between 2023 and 2028.

The DSM lists hundreds of “codes”, each of which indicates a specific kind of mental disorder. For example, 296.23 is “Major depressive disorder, Single episode, Severe,” and 300.02 is “Generalized anxiety disorder.” These codes have information on how common the condition is, how it’s diagnosed, and what kind of treatment is appropriate for it.

Diagnostic codes are the key to health professionals getting paid. If there isn’t a code for it, we can’t get paid for it, and therefore we have very few resources to treat it with. The people who actually pay for healthcare–usually insurance companies or government agencies–decide how much they will pay for each code item to be treated. They’ll pay for, say, three sessions of group therapy for mild depression (296.21), or they’ll pay for more expensive private therapy if it’s moderate (296.22); they’ll pay for the cheap kind of drug if you have severe depression (296.23), but to get the more expensive drug, you need to have depression with psychotic features (296.24).

Healthcare companies, especially in the USA where the system is very very broken and the DSM is written, are cheap bastards. If they can find an excuse not to fund some treatment, they’ll use it. “We think this person who lost their job and can’t get off the couch should pay this $1000 bill for therapy,” they’ll say. “After all, they were diagnosed as code 296.21, and then saw a private therapist for five sessions, when we only allow three sessions of group therapy, and you’re saying they haven’t had enough treatment yet?”

A lot of the advocacy work mental health professionals do is trying to get the big funding bodies to pay us adequately for the work we do. (This is a much easier process in countries with single-payer healthcare, where this negotiation only needs to be done with a single entity. In the USA, it needs to be done with every single health insurance company in existence, as well as the government, sometimes differently in every single state, and then again on a case-by-case basis as well.) Healthcare providers have to argue that three sessions of group therapy isn’t enough, that Medicaid needs to pay therapists more per hour than it costs those therapists to rent a room to practice in, or else therapists would lose money by seeing Medicaid clients. DSM codes exist a tiny bit to let us communicate with each other about the people we treat, and a huge amount to let us get paid. The fact that their existence lets people make sense of their own experiences and find a community with people who share common experiences and interests with them is a very minor side benefit the DSM’s authors really don’t keep in mind when they update and revise different diagnoses.

So when it comes to convincing insurance companies to pay for treatment, humanitarian reasons like “they’ll be very unhappy without it” tend not to work. The best argument we have for them paying for psychological treatment is that it’s economical: that if they don’t pay for it now, they’ll have to pay even more later. If they refuse to pay, let’s say, $2000 to treat mild depression when someone loses their job, and either refuse treatment or stick the person with the bill, then that person’s life might spiral out of control–they might, let’s say, run low on money, get evicted from their apartment, develop severe depression, attempt suicide, and end up in hospital needing to be medically resuscitated and then put in an inpatient psych ward for a month. The insurance company then faces the prospect of having to pay, let’s say, $100,000 for all that treatment. At which point somebody clever goes, “Huh, so it would have been cheaper to just… pay the original $2000 instead so they could bounce back, get a new job, and not need any of this treatment later.”

Trans healthcare can be kind of expensive, since it often involves counselling, years of hormone therapy, medical garments, and multiple surgeries. Health insurance companies hate paying for anything, and have traditionally wanted not to cover any of this. “This is ridiculous!” they said. “These are elective cosmetic treatments, it’s not like they’re dying of cancer, these people can pay the same rate for breast enhancements or testosterone injections as anyone else.”

So when the APA Task Force on Gender Identity Disorder (a task force comprised, as far as I can tell, entirely of cis people) sat down to plan for the 2013 update of the DSM, one of their biggest goals was: Treatment recommendations. Create a diagnosis which they could effectively use to advocate that insurance companies fund gender transition. Like when you go back and read the documents from their meetings in 2008 and 2011, their big thing is “create a diagnosis that can be used to form treatment recommendations.” So that’s what they did; in 2013 they made the GD diagnosis, and in 2014 the Affordable Care Act required insurers to provide treatment for it.

A lot of trans people weren’t happy with the DSM task force’s decisions, such as the choice to keep “Transvestic Fetishism,” which is basically the autogynephilia theory, and just rename it “Transvestic Disorder”. The creation of the Gender Dysphoria diagnosis, basically, was designed to force the preventive care argument. They didn’t think they could win on trans healthcare being a necessity because healthcare is a human right, so they went with: Trans people have a very high suicide rate, and one way to bring it down is to help them transition. One of the major predictors of suicidality is dysphoria. The more dysphoric someone is, the more likely they are to attempt suicide (source). Therefore, health insurers should fund treatment for gender dysphoria because it was cheaper than paying for emergency room admissions and inpatient psychiatric hospitalizations.

I have spoken to trans scientists about what research exists, and my understanding is: The dysphoria/no dysphoria split is not actually validated in the science. That is, when you research trans people, there is not some huge gaping difference between the experiences, or brains, of people With Dysphoria, and people Without Dysphoria. Mostly, scientists haven’t even thought it was an important distinction to study. The diagnosis wasn’t reflecting a strong theme in the research about trans experiences; that research showed that trans people with all levels of dysphoria were helped with medical transition. The biggest difference is just that dysphoria is a stronger risk factor for suicide. Experiencing transphobia is another strong risk factor, but that’s harder to measure in a doctor’s office, so dysphoria it was.

(I’ve seen some transmedicalists claim that dysphoria’s major feature is incongruence, not distress. And I’ll just say, uh… in psychology, “dysphoria” is the opposite of of “euphoria”, literally means “excessive pain”, and is used in many disorders to describe a deep-seated sense of distress and wrongness. As a mental health professional, I just can’t imagine most of my colleagues agreeing that something can be called “dysphoria” if the person doesn’t feel real distress about it. If you want a diagnosis that doesn’t demand dysphoria, you’d need Gender Incongruence in the upcoming version of the ICD-11, which is the primary diagnostic system used in Europe, published by the World Health Organization.)

2. Doctors are not magic

Medicine is a science, and science is a system of knowledge based on having an idea, testing it against reality, and revising that knowledge in light of what you learned. We’re learning and growing all the time.

I don’t know if this sounds painfully obvious or totally groundbreaking, but: Basically all medical research is done by people who don’t have the condition they’re writing about. Psychology has a strong historical bias against believing the personal testimonies of people with conditions that have been deemed mental disorders, so researchers who have experienced the disorder they’re writing about have often had to hide that fact, like Kay Redfield Jamison hiding that she had bipolar disorder until she became a world-renowned expert on it, or Marsha Linehan hiding that she had borderline personality disorder until she pioneered the treatment that could effectively cure it. Often, having a condition was seen as proof you couldn’t actually have a truthful and objective experience of it.

So what I’m trying to say is: The “gender dysphoria” diagnosis was written and debated, so far as I can tell, by entirely cis committee members. The vast majority of psychological and psychiatric research about LGBT+ people is written by cisgender heterosexual scientists. Most clinical and scientific writing has been outsider scientists looking at people they have enormous power over and making decisions about their basic existence with very little accountability.

And to show you how far we’ve come, I want to show you part of the DSM as it was from 1952 to 1973. It shows you just why so many older LGBT+ people find it deeply ironic that now the DSM is being held up as definitive of trans experience:

302 Sexual Deviation This category is for individuals whose sexual interests are directed primarily toward objects other than people of the opposite sex, toward sexual acts not usually associated with coitus, or towards coitus performed under bizarre circumstances as in necrophilia, pedophilia, sexual sadism, and fetishism. Even though many find their practices distasteful, they remain unable to substitute normal sexual behavior for them. This diagnosis is not appropriate for individuals who perform deviant sexual acts because normal sexual objects are not available to them.

302.0 Homosexuality 302.1 Fetishism 302.2 Pedophilia 302.2 Transvestitism […]

Yes, really. That is how psychiatry viewed us. At a time when research from other fields, like psychology and sociology, were showing that this view was completely unsupported by evidence, psychiatry thought LGBT+ people were fundamentally disordered, criminal, and incapable of prosocial behaviour.

My favourite retelling of the decades of activism it took LGBT+ people and allies to get the DSM to change is from a friend who did her master’s thesis on the topic, because she leaves in the clown suits and gay bars, which really shows how scientific and dignified the process was. The long story short is: It took over 20 years of lobbying by LGBT+ people who were sick and tired of being locked up in mental institutions and subjected to treatments like electroshock training, as well as by LGBT+ social scientists, clinicians, and psychiatrists, to get homosexuality declassified as a mental illness. And that was homosexuality; the push to change how trans people were listed in the DSM is very recent, as seen in the latest version listing “Transvestic Disorder”, a description very few trans people ever use for themselves.

Here are a few more examples of how people with a condition have had to take an active part in the science about them:

When HIV/AIDS appeared in the USA, the government didn’t care why drug addicts and gay people were dying mysteriously. Hospitals refused to treat people with this mysterious new disease. AIDS patients had to fight to get any funding put into what AIDS is, how it spreads, or how it could be treated; they also had to campaign to change the massive public prejudice against them, so they could be treated, housed, and allowed to live. Here’s an article on the activist tactics they used. If you want an intro to the fight (or at least, white peoples’ experience of it), you could look into the movies How to Survive a Plague, And the Band Played On, and The Normal Heart.

Chronic Fatigue Syndrome (CFS) is a little-understood disease that causes debilitating exhaustion. It’s found twice as often in women as men. Doctors understand very little about what it is or why it happens, and patients with CFS are often written off a lazy hypochondriacs who just don’t want to try hard. There are basically no known treatments. In 2011, a British study said that an effective treatment for CFS was “graded exercise”, a program where people did slowly increasing levels of physical activity. This flew in the face of what people with CFS knew to be true: That their disease caused them to get much worse after they exercised. That for them, being forced to do ever-increasing exercise was basically tantamount to torture, so it was very concerning that health authorities and insurance companies began requiring that they undergo graded exercise treatment (and parents with children with CFS had to put their children through this treatment, or lose custody for “medical neglect”). So they investigated the study, found that it was seriously flawed, got many health authorities to reverse their position on graded exercise, and have made strides into pointing researchers to looking into biological causes of their illness.

Amyotrophic lateral sclerosis (ALS) is a rare but debilitating disease that isn’t researched much, because it affects such a small portion of the population. The ALS community realized that if they wanted better treatment, they would need to raise the money for research themselves. In 2014 they organized a viral “ice bucket challenge” to get people to donate to their cause, and raised $115 million, enough to make significant advances in understanding ALS and getting closer to a cure.

A common treatment for Autism is Applied Behaviour Analysis (ABA), which is designed to encourage “desired” behaviours and discourage “undesired” ones. The problem is, the treatment targets behaviour an Autistic person’s parents and teachers consider desirable or undesirable, without consideration that some “undesired” behaviours (like stimming) are fundamental and necessary to the wellbeing of Autistic people. Furthermore, the treatment involves punishing Autistic children for failure to behave as expected–in traditional ABA, by witholding rewards or praise until they stop, or in more extreme cases, by subjecting them to literal electric shocks to punish them. (In that last case, they’ve been ordered to stop using the shock devices by August 31, 2020. That only took YEARS.) Autistic people have had to campaign loud and long to say that different treatment strategies should be researched and used, especially on Autistic children.

So I mean… I get that the medical model can provide an element of validation and social acceptance. It can feel really good to have people in white coats back you up and say you’re the real deal. But if you get in touch with most LGBT+ and transgender groups, they’d say that there’s still a lot of work to be done when it comes to researching trans issues and getting scientific and governmental authorities to recognize your rights to social acceptance and medical treatment.

Within a few years, the definition you’re resting on will turn to sand beneath your feet. The Great DSM Machine will begin whirring into life pretty soon and considering what revisions it has to make. You’ll have an opportunity to make your voice heard and to push for real change. So… do you want to be part of that process of pushing trans rights forward, or do you just want to feel loss because they’re changing your strict definition of who’s valid and who’s not?

3. Scarcity is not a law of physics

One of the major arguments I see transmedicalists push is that there’s only a limited number of surgeries or hormone prescriptions available, so it’s not okay for a non-dysphoric person to “steal” the resources that another trans person might need more. This makes sense in a limited kind of way; it’s a good way to operate if, say, you’re sharing a pizza for lunch and deciding whether to give the last slice to someone who’s hungry and hasn’t eaten, or someone who’s already full.

When you start to back up and look at really big and complex systems–basically anything as big, or bigger, than a school board or a hospital or a municipal government–it’s not a helpful lens anymore. Because the most important thing about social institutions is that they can change. We can make them change. And the most important factor in how much the world changes is how many people demand that it change.

I’ve talked about this before when it comes to homeless shelters, and how the absolute worst thing they can have are empty beds. I used to work in women’s shelters, which came about when second-wave feminists started seriously looking at the problem of domestic violence in the 1960s and 70s, It was an issue male-dominated governments and healthcare systems hadn’t taken seriously before, but feminists started heck and did research and staged demonstrations and basically demanded that organizations that worked for the “public benefit” reduce the number of women being killed by their husbands. Their research showed that the leading cause of death in those cases were when women tried to leave and their partners tried to kill them, so the most obvious solution was to give them someplace safe to go where their partners couldn’t find them. Therefore the solution became: Women’s shelters. When feminists committed to founding and running these shelters, local governments could be talked into giving them money to keep them running.

(Men’s rights activists, the misogynist kind, like to whine about “why aren’t there men’s shelters?” and the very simple answer is: Because you didn’t fight for them, you teatowels. Whether a movement gets resources and funding is hugely a reflection of how many people have said, “This needs resources and funding! Look, I’m writing a cheque! Everyone, throw money at this!” In other news, The BC Society for Male Survivors of Sexual Abuse does great work. People should throw money at them.)

When the system in power knows there are resources it wants and doesn’t have, it finds a way to make them appear. For example, in Canada, the government knows that it doesn’t have enough trained professionals living in its far North, where the population is scarce and not very many people want to live. Doctors and teachers would prefer to live in the southern cities. But because it’s committed to Northern schools and hospitals, they create incentives. For example, the government offers to pay off the student loans of teachers or health professionals who agree to work for a few years in Northern communities.

Part of why trans healthcare resources are so scarce is that for a long time, trans people were considered too small a part of the population to care about. Like, “Trans people exist, but we won’t have to deal with them.” Older estimates said 0.4% of the population was trans, which meant a city of 100,000 people would have 400 trans people. A single family doctor can have 2000 or 3000 clients, so the city could have maybe 1 or 2 doctors who really “got” trans issues, and all the trans people would tell each other to only go see those doctors because all the rest were assholes. And the cracks in the system didn’t really seem serious. A couple hundred dissatisfied people not getting the healthcare they needed? Meh! Hospital administrators had more to worry about!

But the trans population is growing. A recent poll of Generation Z said 2.6% of middle schoolers in Minnesota were some kind of trans. which is 2,600 per 100,000. That’s enough to make hospitals think that maybe the next endocrinologist or OB/GYN they hire should have some training in treating trans people. That’s enough to make a health authority think that maybe the state should open up a new gender confirmation surgery clinic, since demand is rising so much.

Or well, I mean. Hospitals have a lot on their minds. This might not occur to them as their top priority. They’d probably think of it a lot sooner if a bunch of those trans people sent them letters or took out a billboard or showed up by the dozens at a public meeting to say, “Hello, there are a fuckload of us. Budget accordingly. We want to see your projected numbers for the next five years.”

When you’re doing that kind of work, suddenly it hurts your cause to limit your number of concerned parties. Sure, limited focus groups or steering committees can have limited membership, but when you put their ideas into action, to protest something or lobby for political change, you need numbers. If you want to show that you’re a big and important group that systems should definitely pay attention to, you don’t just need every trans or GNC or NB person who’s got free time to devote to your campaign, you also need every cis ally who can pad out numbers or lick envelopes or hand out water bottles or slip you insider information about the agenda at the next board meeting. You need bodies, time, and money, and you get them best by being inclusive about who’s in your party. Heck, if it would benefit your cause to team up with the local breast cancer group because trans women and cis women who have had mastectomies both have an interest in asking a hospital to have a doctor on staff who knows how to put a set of tits together, then there are strong reasons to do it.

Basically: All the time any marginalized group spends fighting over scraps is generally time we could spend demanding that the people handing out the food give us another plate. If you don’t think you’re getting enough, the best answer isn’t to knock it out of somebody’s hands, but to get together to say, “HEY! WE’RE NOT GETTING ENOUGH!”

That kind of work is complicated and difficult! It’s definitely much harder than yelling at someone on Tumblr for not being trans enough. But if you do any level of getting involved with activist groups that fight for real systemic change, whether that’s following your local Pride Centre on Twitter or throwing $5 at a trans advocacy group or writing your elected representative about the need for more trans health resources, you’re pushing forward lasting change that will help everyone.

#staranise original #transmedicalism tw #transphobia tw #homophobia tw #my problems with sj let me show you them

350 notes · View notes