Validation, But At What Cost!
On "born this way" advocacy and the pitfalls of using genetics to justify our right to exist
Studies that claim to show evidence of a gene for things like autism, ADHD, and schizophrenia make the rounds all the time, and a lot of people embrace them as personally validating.
A recent study like this was brought to my attention by slugscriber stona, who asked if I have thoughts, and I definitely do! They are more philosophical thoughts, not so much debunking as asking: what do we sacrifice when we use this kind of science to justify our being? And, because history is our road map to the future: how has this story played out already?
“Gene Mutation Leading to Autism Found to Overstimulate Brain Cells” is the headline on a Rutgers press release about the NIMH-funded study, in which researchers created certain types of human genes from stem cells using CRISPR, and then implanted them into mouse brains, where they observed more electrical activity in these “mutated” genes than in ones that were not altered in this way.
They referred to it as “an enhancement, not a deficit”, and proposed that this could be the cause of autism. In press releases, scientists usually provide an explanation for why they are pursuing a particular research question, and in this case:
“So much of the underlying mechanisms in autism are unknown, which hinders the development of effective therapeutics,” Pang said.
I wrote last week that we need to be careful about using biology to justify difference, and I’ve argued before that we should stop looking for ADHD genes, because governments and institutions do not fund genetic research like this for nothing.
The point of this work is not personal validation for autistic people — it’s the development of very profitable treatments and genetic interventions that can alter human beings for the benefit of the capitalist state.
Whether marginalized people should turn to science to defend our identities and achieve civil rights is a conversation that has been going on for a long time, and we do have some recent history for guidance.
In 1991, a study on hypothalamus size differences between heterosexual and homosexual men was published by neuroscientist Simon LeVay, himself a gay man who was determined to find scientific evidence that would justify his sexuality. His study claimed to show that the hypothalamus of gay men was smaller than straight men, and it made for great headlines at a time when pop culture was going absolutely apeshit over the new Human Genome Project.
LeVay, along with many major gay and lesbian nonprofits and advocacy groups, thought the best way to fight homophobia and secure gay rights was to scientifically prove that homosexuality is not a choice.
As Joanna Wuest recounts in her political history of the “born this way” narrative, this was a defense against the conservative fear that being gay was contagious and could rub off onto children (which we see repeating verbatim in the current trans panic). Immutability — the idea of a fixed, innate, unchanging sexual orientation — was also seen as an effective legal tactic for winning anti-discrimination battles, cases in which LeVay served as an expert witness.
In a 1993 interview, he brushed off criticisms that his work could lead to eugenicist interventions and cures for queerness, confident that in 20 years, the much-hyped Human Genome Project would explain most of our DNA. (It did not.)
He said:
“Basically, are gay people worth having? Or are they a menace and a pest and lets get rid of them? If you can persuade society that they are just as healthy and desirable members of society as everyone else, then I think all these other issues fall aside.”
This framing sounds similar to the “enhancement, not a deficit” line, and it nods toward a trend I’ve seen on the internet lately (and frankly, find alarming): claims that autistic people have a superior type of brain and are the “next stage” in human evolution.
While I understand the allure of a superpower narrative when you’re grappling with a lifetime of shame, I disagree with any argument based in a framework of deservingness or superiority. These are arguments about worth, and as we know, worth in this society is contingent on economic productivity. But what about the disabled people who don’t have profitable superpowers, and can’t be assimilated into the workforce?
Radical queers in the 90’s dissented to the liberal gay gene craze by asking similar questions about bisexuals and trans people, who did not so easily fit into a neat binary that could be readily absorbed into polite society with bioessentialist science.
Wuest writes:
These groups urged the movement to consider how heterosexism and gender normativity were the real culprits of their shared oppression, and that the immutability frame threatened to assimilate some at the expense of the larger whole that they were at that moment attempting to stitch together.
She examines a 2005 pamphlet disseminated by ACT UP, which read:
“The question of whether we were born gay should have no meaning: we are entitled to be who we are, regardless. We deserve to be out and given legal protection no matter how we walk, talk, look or what we do sexually…We need no permission to be who we are.”
This critique was accompanied by an extended bullet-point tour through the history of race science, noting along the way how laws such as the eugenic-based Virginia's Racial Integrity Act of 1924 were the ancestors of modern day racist and sexist biodeterministic theories manifested in books like Richard Herrnstein and Charles Murray’s infamous The Bell Curve and then-President of Harvard University Larry Summers’s hypothesis that there were fewer women employed in the STEM fields due to genetic inferiority. The point of this exercise, the authors explained, was to demonstrate that appeals to genetics were historically the domain of oppressors and that “genes will not save you when someone with power wants to keep you down or to eliminate you.”
For ACT UP and many other radical queers, asking for assimilation via genetic deterministic narratives was not an option; rather, they took a self-determination line on both political organizing as well as their sense of identity.
It’s not that “born this way” wasn’t successful — it did help change laws about marriage, discrimination, conversion therapy, and military inclusion. Widespread acceptance of gays and lesbians happened shockingly fast in the US, and we’re seeing a similar defense about the immutability of the “trans brain” being deployed in our current culture war.
Wuest notes that claiming things like sexuality and gender are fixed makes any kind of uncertainty or fluidity suspect. Nevertheless, the emergence of a born this way politic in trans discourse shows how “the paradigm is relatively adept at absorbing new categories” and can be “a highly effective tool for…very liberal assimilationist politics”.
But, considering that hate crimes against LGBTQ people are on the rise, has bioessentialism really persuaded everyone that we deserve to exist? Couldn’t hinging our rights on our DNA also embolden those who prefer to see us as biologically defective?
Here my mind goes to a speech in Trans Liberation by Leslie Feinberg, the late activist and revolutionary communist who wrote the book Stone Butch Blues. Feinberg was also skeptical of studies that claimed to have found differences between gay and straight brains, arguing that the validity of this science was beside the point:
I feel it’s possible to say that at this moment in time, our destinies are determined by the constant interaction between the ship we are fitted with, the direction we set for ourselves, and the forces in society that affect our course - including the gale winds of bigotry, the undertow of discrimination, and the deeply carved channels of poverty and inequality.
The “nature versus nurture” debate has meaning for each of us here because we are constantly being asked in life: Why are you the way you are? When did you first know you were different? Do you think that while you were in the womb your tiny fist inadvertently clenched an essential gene too hard? Or was your mother domineering?
And my answer is: Who cares! As long as my right to explore the full measure of my own potential is being trampled by discriminatory laws, as long as I am being socially and economically marginalized, as long as I am being scapegoated for the crimes committed by this economic system, my right to exist needs no explanation or justification of any kind.
I get the impulse to explain yourself — it’s a pretty common defense mechanism when you’ve experienced maltreatment, and it’s also just a regular part of identity formation. To ask, “why am I like this?” is to be human. But introspection can become a trap, leading to an individual, reductive understanding of ourselves and our health.
When I first came out as queer and then as autistic, I spent a lot of time reading about neuroscience and genes, oversharing about my experiences on the internet, and engaging in heated, pedantic discourse about categories and labels and gatekeeping.
As I gained more understanding about who I was, got more comfortable being that person, and found a community that understood me, I stopped needing to define and defend every little molecular detail about why I was.
How does quantifying my neurotransmitter receptors help people know me? How does understanding the Neurologin-3 R451C gene mutation help me live my life, or change anything about the world around me?
I realized that my identity was not some kind of formula I could solve or research paper I could publish. At some point, I had to stop thinking about my own brain and focus on things bigger than me, like politics and art. I needed to turn my curiosity and my thirst for answers outward, because I couldn’t find purpose inside my own head.
Ironically, though they make it possible for us to experience it, there’s no meaning in our neurons. You don’t need to have scientific proof that you deserve respect and rights. Your DNA is not irrelevant, but it’s also not determinate, and to quote ACT UP: genes will not save us.
I’m on a once-a-week schedule for the winter but I’m trying out a new two-birds-one-post format where I put extras behind the paywall. There was a bunch of stuff I discovered in my research for this piece that I couldn’t fit, some of it more detailed critique of the science that was interesting but not the angle I wanted to take here, so I’m putting an assortment of related notes, quotes, and links below, plus a short list of books for further reading.
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