On gender identity, amputee wannabes, & our contagious natures

At the close of the second of NPR’s two part look at how parents are addressing their children’s gender-identity issues which aired last week, Robert, the father of Violet, who is “absolutely certain” that she is “genuinely transgender,” explains how he finds himself “almost offended” when people suggest that he and his family have been too quick to embrace a transgender identity:

“It puzzles me because we even have well-intentioned parents who we care about and who know us … say, ‘Well she’s too young to know!’ Well, when did you know you were a girl? When did I know I was a boy? I knew my whole life, I can’t tell you exactly when, but it wasn’t like I was 10 and realized, ‘Oh gee, I must be a boy!’ ” Robert says. “What people fail to realize is they made that decision way earlier than that. It just happened that their gender identity and their anatomy matched.”

The story’s focus is a highly controversial treatment, monthly injections of a medication for preteen kids to postpone puberty and avoid developing the physical attributes of the sex they were born with. The family found a therapist and after a two-month evaluation, a gender identity disorder diagnosis was rendered; on a family vacation, Armand, their son, would “transition” to Violet, their daughter.

When I am asked how old I was when I realized that I was gay, I answer, “five.”  How I knew when I was that young, I do not know, but that’s my honest answer. So my sympathies are with those parents. My sympathies are, however, complicated by the condition known as Body Integrity Identity Disorder. Also called Apotemnophilia, and Amputee Identity Disorder, I first learned of the condition in an 8,800 word Atlantic piece from December 2000, by Carl Elliott, titled A New Way to Be Mad:

I am on the phone with Max Price, a graphic designer in Santa Fe, who has offered to talk to me about apotemnophilia. (He has asked me to change his name and the details of his life and history if I write about him, and I have.) Price is a charming man, articulate and well-read, and despite my initial uneasiness about calling him, I am enjoying our conversation. I had corresponded by e-mail with a number of wannabes, but had not managed to talk to any of them until now. The conversation has taken on an easy intellectual tone, more like a discussion between colleagues than an interview. Price is telling me about his efforts to get doctors to adopt some guidelines for deciding when a person with apotemnophilia should have surgery. I am tossing out ideas, trying out some of my thoughts, and I wonder aloud about a relationship between apotemnophilia and obsessive-compulsive disorder. I ask Price whether he feels that his desire is more like an obsession, a fantasy, or a wish. He says, “Well, it was definitely like an obsession. Until I cut my leg off, of course.”

That brings me up short. I had been unaware that he had actually gone ahead with an amputation. “Ah,” I say. I pause. Should I ask? I decide I should. “May I ask how you did it?” Price laughs. “It was kind of messy,” he says. “I did it with a log splitter.”

Elliott explains the ideas of the philosopher and historian of science, Ian Hacking, who suggests that psychiatrists and other clinicians helped to create “transient mental illnesses” simply by the way they viewed them:

He points out, for example, that the multiple-personality-disorder epidemic rode on the shoulders of a perceived epidemic of child abuse, which began to emerge in the 1960s and which was thought to be part of the cause of multiple-personality disorder. Multiple personalities were a result of childhood trauma; child abuse is a form of trauma; it seemed to make sense that if there were an epidemic of child abuse, we would see more and more multiples.

Crucial to the way this worked is what Hacking calls the “looping effect,” by which he means how a classification affects the thing being classified. Unlike objects, people are conscious of the way they are classified, and they alter their behavior and self-conceptions in response to their classification… In the 1970s, he argues, therapists started asking patients they thought might be multiples if they had been abused as children, and patients in therapy began remembering episodes of abuse (some of which may not have actually occurred). These memories reinforced the diagnosis of multiple-personality disorder, and once they were categorized as multiples, some patients began behaving as multiples are expected to behave. Not intentionally, of course, but the category “multiple-personality disorder” gave them a new way to be mad.

I am simplifying a very complex and subtle argument, but the basic idea should be clear. By regarding a phenomenon as a psychiatric diagnosis—treating it, reifying it in psychiatric diagnostic manuals, developing instruments to measure it, inventing scales to rate its severity, establishing ways to reimburse the costs of its treatment, encouraging pharmaceutical companies to search for effective drugs, directing patients to support groups, writing about possible causes in journals—psychiatrists may be unwittingly colluding with broader cultural forces to contribute to the spread of a mental disorder.

At the time I was reading this, I was working for an Internet company in Manhattan and well aquatinted with memes, and managing a gay online dating service. Some of these passages had a special resonance for me:

Ian Hacking uses the term “semantic contagion” to describe the way in which publicly identifying and describing a condition creates the means by which that condition spreads. He says it is always possible for people to reinterpret their past in light of a new conceptual category. And it is also possible for them to contemplate actions that they may not have contemplated before. When I was living in New Zealand, ten years ago, I had a conversation with Paul Mullen, who was then the chair of psychological medicine at the University of Otago, and who had told me that he was a member of a government committee whose job it was to decide whether pornographic materials should be allowed into the country. I bristled at the idea of censorship, and asked him how he could justify being a part of something like that. He just laughed and said that if I could see what his committee was banning, I would change my mind. His position was that some sexual acts would never even occur to a person in an entire lifetime of thinking about sex if not for seeing them pictured in these books. He went on to describe to me various alarming acts that, it was true, had never occurred to me. Mullen was of the opinion that people were better off never having conceptualized such acts, and in retrospect, I think he may have been right.

This is part of what Hacking is getting at, I think, when he talks about semantic contagion. The idea of having one’s legs amputated might never even enter the minds of some people until it is suggested to them. Yet once it is suggested, and not just suggested but paired with imagery that a person’s past may have primed him or her to appreciate, that act becomes possible. Give the wish for it a name and a treatment, link it to a set of related disorders, give it a medical explanation rooted in childhood memory, and you are on the way to setting up just the kind of conceptual category that makes it a treatable psychiatric disorder. An act has been redescribed to make it thinkable in a way it was not thinkable before. Elective amputation was once self-mutilation; now it is a treatment for a mental disorder. Toss this mixture into the vast fan of the Internet and it will be dispersed at speeds unimagined even a decade ago.

My point in all of this is not to suggest that there exists a right or wrong, a yes or no, a conclusive way to go. Elliot says we have to learn to live with fuzziness:

A look at the history of psychiatry over the past forty years reveals startlingly rapid growth rates for a wide array of disorders—clinical depression, social phobia, obsessive-compulsive disorder, panic disorder, attention-deficit hyperactivity disorder, and body dysmorphic disorder, to mention only a few. In trying to pinpoint the causes for this expansion one could, depending on ideological bent, point to the marketing efforts of the pharmaceutical industry (more mental disorder equals more profits), the greater diagnostic skills of today’s psychiatrists, a growing population of mentally disordered Americans, or a cultural tendency to look to psychiatry for explanations of what used to be called weakness, sin, unhappiness, perversity, crime, or deviance. But the fact is that none of these disorders could have expanded as they have unless they looked a lot like ordinary human variation at their edges. Mild social phobia looks a lot like extreme shyness, attention-deficit disorder can look a lot like garden-variety distractibility, and a lot of obsessive-compulsive behavior, as Peter Kramer told me, “verges on the normal.” The lines between mental dysfunction and ordinary life are not as sharp as some psychiatrists like to pretend.

What I’d like to suggest we need is a compassionate understanding of the struggles that each of us faces, and an openness to continuing to explore all of the avenues we can.

Back in our NPR story, Robert was faced with the task of reintroducing his 11-year-old son, now daughter, Violet, to his extended family. He chose to do it at the funeral of his own father:

All my aunts, seven of them, were sitting in a semi-circle and – I have one aunt who’s kind of the matriarch, she’s clearly in charge. And my aunt asked, she said, Bobby, I thought you had a boy? And I said, well, Tiya(ph), I did have a son, but I found out that I really never did have a son. What I have is two daughters. Armand is transgender, and what that means is that, even know that he has a male body, she’s really a girl. And her name is Violet, and I want you meet her again. And I called Violet over and I said, honey, come here. And she come skipping over and I said do you remember all your tiyas(ph), you know, and I went through. And then she skipped off and I was ready for whatever was going to come. And there was a little bit of a silence. And they were all kind looking at my one aunt who was clearly in charge, and she looked at me and she said, you know, Bobby, I’m really proud of you. She said it couldn’t have been easy. It couldn’t have been easy to accept that. And I’m very proud of you.

You must listen to the story to hear the emotion. The compassion. The love. Any child raised in a family with such love has an advantage when facing life’s challenges. And all of us face challenges even if only of a far more ordinary sort.

RELATED: My take on Part 1 of the NPR series.