Much more will appear in this space about the issues raised in my last piece, ways trans folks can make greater strides in care for ourselves and community, but this random and interesting science story gripped my imagination hard just a few minutes ago and won’t let go.
It’s got everything! Deep and powerful urges to engage in motivated reasoning to support its claims on the one hand, peer reviewed science on the other hand, and such a heavy weight of broader implications. If we made summer blockbuster movies for other skeptics instead of blogging, a flick based on these issues would bank hard.
Robert Krulwich, one of the minds behind NPR’s “Radio Lab”, writes this story about a study, linked to from that page, on “phantom fingers”.
The phenomenon of people experiencing sensation, even complete articulation, of limbs or digits that they have lost, is a well documented, if not fully understood, fact. The personal tragedy of one woman, already likely a victim of thalidomide in utero, gave scientists studying “phantom limbs” reason to postulate an explanation for these sensations that has potentially enormous implications beyond the experience of amputees.
In brief, a girl was born with symptoms of thalidomide poisoning, which in her case meant a right hand without much of a thumb and no index finger at birth. In later misfortune, a car accident forced the amputation of that entire hand.
And this is where it gets interesting. Like many people in her situation, she began to experience phantom limb syndrome. In her case, she experienced sensation in a hand that had all five fingers, which she not only did not have, but had never had before.
Years after, she would then develop another common issue, experiencing severe pain in her phantom fingers, specifically as though two of the fingers were twisting out of shape. The doctor behind this study had previously developed a now famous treatment for this particular phantom pain, which involves the patient placing both hands, the real hand and the phantom hand, in a kind of mirror box, while they put their flesh and bone fingers into the “painful posture”, then slowly resume a comfortable, relaxed shape again. This treatment, in a few weeks of practice, appears to use mirrors to trick the brain into untwisting the imaginary hand, and stop generating pain.
The doctor’s treatment method, this specific patient’s experience of phantom fingers, her mind generating the experience of fingers she had never possessed, all of it lead to this potential explanation:
“Maybe, the doctors write, all of us are born with an innate, hard-wired ‘body-plan’, an inherited map of how we are supposed to look. The map is in us, but experience can muck things up.”
And you know what those lines suddenly put me in mind of?
Think about it. We aren’t in trans 101 territory on this site, where it might still make some kind of sense to repeat the “sex is your body, gender is your mind” line. When I think just about the experiences those I’ve known personally have shared, trying to find language for constantly, and yes, some of them reaching for phantom limb syndrome as a metaphor for their feelings, this feels like an enormous puzzle piece falling into place.
The trans man sex educator I know, who “feels” his cock as surely as his own arm. My partner’s sensation, over twenty years, of tingling and other feelings in their breasts, long before they ever knew they might not be the male they were coercively assigned. Hundreds of lives and stories, all potentially that much more validated by this legitimizing science. It’s a really heady feeling.
Which means it’s never more important to be skeptical, when that powerful “eureka” feeling comes.
First, and for me personally, the most obvious question to raise is this. What about those of us who are ambivalent or opposed to any form of genital reassignment? I can’t say with total certainty that it’s for me. It’s also moot given the prohibitive cost, but if someone were to offer me a full ride, I don’t know that I’d take it. Even though I definitely have experiences with my body that are like this, my conscious mind isn’t fully on board with bringing my flesh into alignment in that way. We know better than to talk about gender as a continuum between male and female anyway, so even if this theory is true, it may not be applicable.
Then there’s another sort of under our noses fact to consider. The woman referred to in the study already DID have a left hand, at birth, which developed along standard lines. Given our brain’s predisposition towards symmetry, one could pretty easily say that her left hand already gave her an effective, lived model of what a whole hand should be.
The study addresses this, however:
“Why, during those 18 years when she didn’t have an index finger — why was there no phantom? The doctors suggest ‘the mere presence of [her actual, impaired] hand was sufficient to inhibit the innate representation of her normal hand.’ In other words, everyday messages from the hand she got repressed the ghost of the hand she was meant to have. Tactile, proprioceptive and visual feedback told her, ‘Sorry, you can’t do that,’ ‘Sorry, no pointing, you don’t have a finger there,’ and all those sorries, arriving constantly, dominated her brain and left no room for the ghost finger to make itself known.”
This too probably makes many of us with experience of dysphoria nod our heads. If you’ve ever felt uncertain or terrified or ashamed that your life didn’t seem to perfectly match up with the Harry Benjamin Syndrome standards, you can’t say honestly that you “always knew” you were “in the wrong body”, you probably know a great deal about how not only society and familial reinforcement, institutional power, but also your own mirror contribute to the complicated mix of coping mechanisms and self abnegation that many of us relate to and struggle, often without end, to come out from under and take one whole breath as our own self.
And yet, to be skeptical once more, how many of us are just falling under the influence of other neurological processes, motivated reasoning and memory editing? In the brain’s constant effort to establish continuity, to “tell a story” of our life that is contiguous and rational, how much of what it “remembers” is simply convenient to the story being told right now?
It’s important to note, as they do already in full disclosure, that they have no evidence for a “hard-wired” body plan, which can produce these phantom sensations. It’s a theory. As a theory, it does work to explain observed phenomena. However, it is not conclusively proven fact.
The doctors at least felt as though they could rule out the likelihood of their patient lying about the sensations. The phantom fingers were still somewhat stunted, almost as though her brain created them halfway between the hand we expect most people to have, and the hand she actually possessed before amputation. If she were lying, why not lie about having a totally “perfect” hand? This feels more like a neurological compromise between whatever mechanism is producing the sensation according to a “body plan”, and the embodied fact of a hand which developed differently from the plan.
I certainly don’t know either way, much like my ambivalence about GRS. I don’t even know why I’m ambivalent, if it’s some genuine attachment to my factory parts, or really just an extension of the emotional and mental coping compromises I’ve made with the reality that I will likely never be able to change my body so profoundly. When simply obtaining money for hormones has sometimes meant taking risks being intimate with strangers, it’s hard to be certain.
I do know we can’t let our desperate need for broader understanding and legitimacy of trans experience in the mainstream, cis normative world override our commitment to what is true. At the same time, without anything yet to strongly suggest this isn’t true, isn’t a truly sound theory, the feeling I get from thinking about dysphoria alongside this study is strangely comforting and exciting at the same time, much like my first dose of estrogen. Maybe it brings us closer to being right on their terms, when the simple fact that we are living it is often not enough to convince people that we are telling the truth about our own life.