Diagnoses like “Gender Dysphoria” May Not Be Medically Real — But They Sure Are Politically So
In Skrmetti, the court’s legal logic hinges upon a medical disorder, which has never been proven to exist— an “open secret” that applies to all psychiatric diagnoses.
Opinion, by Sandy Ernest Allen
A few years ago, I realized my life and work were at odds in a way that increasingly concerned me, like I was a train noticing my two tracks steadily diverging. In order to receive the life-saving healthcare I needed — like a Testosterone prescription, and top surgery, and most recently, a hysterectomy — I had to wilfully obtain a diagnosis I know to be medically … not necessarily real.
As a journalist, I focus on mental health care. My first long feature about “mental health care” was this one in 2015, about a woman with myriad psychiatric challenges, who’d been shot in her bedroom by SFPD deputies who’d been summoned there by a social worker. But for years I’d already been working on what would become my first book, about our mental health care system’s past and present, focused around the diagnosis “schizophrenia.”
I sometimes say my first book was like a baton I had been handed in a relay race; My late Uncle Bob had begun the project, years back, during the decades he lived alone in his California desert home. He sent the original manuscript to me back in 2009, a project I eventually took on. During the early summer of 2015, I got a book deal, one so seemingly life-changing, I put in my notice at my job.
But I gave myself a few months, not two weeks, because, first I had to wrap up editing many other stories and also writing a few, including the aforementioned, about the woman who’d been shot in San Francisco, the case of which was then heading to the supreme court … I began wondering, more and more, what was the deal with all of psychiatry? Because back then, to my tremendous dread: I was still confused.
Uncle Bob had first been psychiatrically hospitalized in his hometown of Berkeley, CA when he was a teenger (this during the late sixties and early seventies). His psychiatric ‘label’ was “paranoid schizophrenic,” as he’d spelled out across his own autobiography’s cover. He’d typed his life story in all caps, no paragraphs, quite misspelled, hardly punctuated except with colons. He’d mailed me the sixty cigarette-stinking pages just as I’d started grad school.
My own attitudes about Bob and “crazy” people like him prior were, in hindsight, stuff I’d picked up from my family and culture; it’s clear now that, previously, I just wasn’t very informed. (I’d comment, it’s pretty normal for the public without direct connections to these topics to hold such prejudiced, misinformed views as I did before.)
Back when I was first writing about Uncle Bob, I was fully closeted, even to myself, and didn’t think of myself as being like him; however in hindsight it’s clear how much as a trans person, an outsider, I was like him. I probably resisted seeing our affinity however, resistant as I was through my teens and twenties of being seen as “weird” or as “crazy.”
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An error I often observe — amongst my fellow media professionals and in discussions of mental health: No person is actually objective (as regards “mental health” or “gender,” for example). Put simply: Cis people often think they are objective or unbiased when it comes to trans people — but they aren’t. Cis people are simply, according to this repressive binary’s rules, more powerful than us.
Debates within mainstream psychiatry frequently focus on who gets to assign pathology-laden labels to whom. These are the same conversations that we have about trans identity, about who can correctly be called trans, and what it means to shift from centering the opinions of a therapist or doctor to affirming the ability of a trans person to know themselves.
There’s history to this. Before we were trans in today’s parlance, trans people were trapped in psychiatry’s big purple book of diagnoses, the DSM—and to the extent we must obtain gender dysphoria diagnoses to obtain care, we still are. This is because we don’t conform to society’s norms, and mainstream psychiatry’s all-powerful book defines which nonconformity is "pathological" at a given time.
It’s long been an ‘open secret’ that what goes in the DSM is decided not in medical laboratories but via a political consensus of American Psychiatry Association members, the professional organization that publishes the book. This became very clear to those of us observing it when, for example, Dr. Thomas Insel, then head of the NIMH, basically conceded the APA diagnoses aren’t medically validated enough to base research on — a full 12 years ago. However “objective” such doctors might believe themselves to be, no human is objective — as that famous instance from half a century ago of (white, male) homosexual psychiatrists removing themselves from their own big book of supposed pathologies really gave away.
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I am no stranger to being on the receiving end of mental health care, to an extent that I, for practical reasons at the time, totally ellided when writing my book about Uncle Bob. My first book was about Bob, not about me, my two editors and I reasoned.
My initial interest in writing Bob’s story hadn’t even been “mental health” — it had been “truth,” because I was a nerdy nonfiction MFA student. My peers and I often sat around classrooms and afterwards bars, debating the limits of our own genre. I knew that in Uncle Bob’s rather fantastic manuscript, I had a perplexing entry as pertained to these truth debates. I had therefore begun trying to develop Bob’s materials into some form more readers might be willing to listen to. The project eventually grew a second font (what I think of as “my font”; the book’s literally written in two fonts). In a typewriter-y one, I “cover” my uncle’s origins story, sometimes interrupting from him in all caps. In my own font, I added a layer of context and commentary about our family but also about psychiatry and our society itself.
In America in particular, we have a bit of an upside-down situation wherein many degree-having supposed experts are largely unaware as to the broader reality. Our mental health care premise is one in which diagnostic categories are topics of great debate, and the treatments that come along with them can be even more hotly debated. According to our paternalist paradigm various professionals have often been trained to ignore their patients’ reports, to whatever degree, while being faced with often fast-moving, even dangerous or potentially deadly situations in which they often must make tough calls. The overall situation, in my long observation, produces lots of hurt feelings on all sides, patients and professionals and their families; while the public otherwise remains largely oblivious about all of this.
Conversely, in my long years now of studying this space, it’s some activist former psychiatric patients (read: “crazy” people) who tend to understand the full picture, as exemplified by the very existence of the publication Mad in America (which was started by a pharmaceutical journalist, who wrote this now-classic muckraking work amongst others, and is spearheaded nowadays mostly by individuals “with lived experience” as one might hear it phrased, in this scene). To give another example, Uncle Bob it turned out really knew his stuff, which I learned after I fact checked all his claims to death, as I discussed at length in my book.
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Some years ago, I might have been too timid to so clearly state the big issue regarding our psychiatric paradigm. I’d have worried about offending or alienating those who take psych meds for example or who for their jobs depend upon the continuation of our current mental health norms. But Uncle Bob took psych meds until his dying day, for many nuanced reasons my book unpacks. He also spoke highly of at least one of his psychiatrists, for example. All such is not uncommon amongst even those “Mad Pride” types I’ve known and interviewed.
Many Americans take psych meds — many trans and queer folk included; some of you reading might even adore your meds and/or your psychiatrists or therapists and such. Conversely, others amongst you might find yourselves much more wary of seeking traditional such interventions — perhaps because of previous bad experiences in such treatment settings, maybe even as kids. In general: trans people must “prove” our “sanity” — to obtain the surgery and hormones we find life-saving (or insurance coverage for such). Those cis readers unfamiliar for example maybe don’t realize we must get two letters of support from “mental health” professionals oftentimes — even trans adults like myself who’ve lived openly for years in our gender. I went through just recently trying to get a hysterectomy (and my coverage was initially rejected, by United Health, in December).
Meaning trans people, regardless of our other psychiatric experiences, however positive or negative or mixed bag, we must interface with “mental health” professionals in order to obtain the life-saving trans healthcare we need — gatekeeping that harms many wary of psychiatry itself. I also work with two talented “mental health” type professionals myself these days. In general: I respect all individuals’ choices. These days, I also understand, and fully respect — as someone who’s now reliant on Testosterone nowadays— the feeling of fearing some bullshit eugenicists in power taking away my life-saving pharmaceutical.
Underscoring: I am not arguing we should take away anyone’s life-saving medications or other treatments — ever. No radical mental health activist I’ve known is arguing to take away anyone’s meds, nor even ECT/shock — arguably the most controversial psychiatric treatment still in use. Radical psychiatric patient activists (and their professional allies like me) are typically just concerned with whose decision it is when it comes to which chemicals and such go into our bodies and minds. Nonetheless, American psychiatry’s book remains very powerful, authoritative in our country especially, in our schools, in our doctors’ offices and our therapists’ ones — and in our courtrooms.
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I have long been diagnosed with anxiety and CPTSD, amongst other mental health-influenced conditions. Which is unsurprising given my being a survivor of childhood domestic abuse, for example. Also worth disclosing to you all here: In 2021, some three years after AKOMP first published, I had my own severe, life-altering psychiatric emergency — one I will be discussing in my in-progress sequel to the first book.
In brief, this crisis and its aftermath cemented my already strongly held beliefs that these are universal considerations. By which I mean, in practical terms: The form our mental health care takes matters — especially for those experiencing severe totally disabling emergencies.
What sorts of options does the supposedly “sane” tax-paying public fund for such emergencies? Bullets and jails? ERs? Or something better, something more humane? Something more science-backed and also commonsense? To echo a rhetorical question a Voice Hearer activist I greatly admire often asks: ”What would you want, if you were having the worst day of your life?”
I’m a proud trans, queer, Mad reporter who covers “mental health care.” I try to do so in a way that’s science-backed and also humane. I try to admit my own biases — including to myself. I hope my (in some cases literal former) colleagues in the mainstream press, those cis folks stubbornly focused on writing on trans children in particular, can learn to do the same. Because their delusion, however self-protective, is killing my community — especially vulnerable kids.
Trans rights are human rights. Mad Pride is another way of saying the same thing. These are conversions about the unchecked rot that is eugenics. These are conversations about bodily autonomy. These are conversations about the great diversity of humanity itself, including within. And yes, we’re talking about “truth” itself. These conversations do matter given for example the Supreme Court hinging their entire ruinous decision in Skrmetti to the psychiatric diagnosis of “gender dysphoria — again prerequisite for us trans folks to access care. Hence me, those years ago, I went and I willingly got one, in order to get top surgery and then T and then, most recently, a long-delayed hysterectomy.
But really we’re talking about power: Who gets to define you? Doctors? Governments? Industry-funded lobbying groups? Or do you as an individual get listened to, regarding your own truths? Do you get to follow that inner light, the one only you have experienced and feel inside? As for that truth, I often don’t know what to call that, other than “divine.”
Sandy Ernest Allen is an author, essayist and journalist whose work focuses on mental health and gender from a human rights perspective.