The Gentrification of Disability

When I was in my late 20s (early 2007 to mid 2009, maybe) I worked for the local public school district in my hometown. For the bulk of my time there I was in a special program for kids with severe emotional disturbance, which I’ve written about once or twice. But I worked in a number of capacities in those years, and for a little while I helped out in a conventional special ed classroom for the middle school. I guess you’d say I was a paraprofessional, just extra coverage when they needed it.

In that class there were two boys who had autism which resulted in severe academic and social and communicative impairments. One of them was completely nonverbal and had been his entire life. As I understood it, he had never been capable of speaking or reading, could not dress himself, wore sanitary garments, could not go to the bathroom without assistance. He would occasionally screech very loudly, without clear cause. I believe these days he would be referred to as having Level Three autism, as defined by the DSM. He needed a lot of help, and though he was unable to complete what might conventionally be called academic work the school provided him with structure, support, and time during which his mother didn’t have to care for him. I met her on several occasions when she came to pick him up after school. She would sometimes talk about the difficulties of raising a disabled child in language that would be frowned on today, but I admired how frank and honest she was.

She was really not a fan of the autism awareness community of the time. This was well before the “neurodiversity” movement and all of its habits. It was all about awareness, raising awareness, 5ks for awareness, bumper stickers for awareness. That was precisely what angered her the most. She said to me once, “What does awareness do for my kid? How does it help me?” Words to that effect. It was a good question, one I couldn’t answer. Today I don’t hear about awareness so much, but there’s still plenty of the basic disease of awareness thinking - the notion that what people who deal with a particular disability need is a vague positivity, that what every disabled person requires is the laurel of strangers condescendingly wishing them the best. Now, with the rise of neurodiversity and the notion that autism is only different, not worse, we are confronted with similar questions. When a mother struggles every day to care for someone who will likely never be able to care for himself, what value could it hold for her that his condition is called diversity, rather than disorder? What value can it have for him, who cannot speak to comment on the difference?

I thought of that mother when I read about the recent cancelation of an academic panel at Harvard. It seems a panel of experts was slated to speak on the subject of how best to help those with autism. But as they planned to speak about treatment, about treating autism as a hindrance to be managed, the event was decried as “violently ableist” by Harvard activists and swiftly shut down. It’s worth looking at the petition that was organized as part of this effort. One part reads

Autism is a neurodevelopmental and neurobiological disability that is not treatable or curable. It is not an illness or disease and most importantly, it is not inherently negative. Autistic people at Harvard and globally have advocated in the face of ableism to defend ourselves from such hateful, eugenicist logic.

This is, I think, nonsensical. It asserts that autism is a disability, a dis-ability, but also that it’s not an illness, a disease, or inherently negative. But the very concept of disability depends on the notion that disabilities are inherently negative. If they are not in some sense disabling, the term has no meaning. What’s more, the entire moral and legal logic that underpins the concept of reasonable accommodation - the affordances we make for people with disabilities, mandated by the Americans with Disabilities Act - depends on the idea that these things are both unchosen and harmful. If they’re not, then there’s no communal obligation to accommodate them. What would they even need accommodation for?

More, though, I cannot comprehend the arrogance of the woman who led the charge against the panel at Harvard, Kris King, to sit on her perch at the most exclusive university in the world and declare for the entire autistic community what autism is and means. It’s unsurprising that she’s disdainful of the need for treatment, given that she’s so high-functioning that she’s flourishing at an Ivy League university. She will never live the life that mother I knew lived. She will likely never care for someone whose autism has devastated them, robbed them of their ability to have conventional human relationships, to have a career, to be in love. Such debilitated people and their families will never have the cultural influence of a self-promoting Harvard student and so they’re simply read out of the conversation. Meanwhile autism activists and advocates make sweeping pronouncements about the lives of people they don’t know and could never understand.

“Autistic people at Harvard and globally have advocated in the face of ableism to defend ourselves,” she writes. In fact, Ms. King, globally there are millions of people whose autism ensures they can’t advocate at all. Spare a thought for them, while you’re busy framing your diploma.

In the years that followed my brief employment at the school district, the ideology that led to people like King was born. In the early 2010s there was a flurry of interest in autism. Dozens of books and hundreds of essays were written about autism, almost all of which talked about it as a set of valuable personality quirks rather than as a disorder. In article after ponderous article, autism was described as a newer, perhaps better way of thinking, sometimes even a “new evolution” for the human species. Always, always, always, this navel-gazing fixated relentlessly on the highest-functioning people with autism. You could read tens of thousands of words in this genre without ever once being informed about the existence of those whose autism debilitates them. Whenever I read yet another article talking about how some high-achieving computer scientist saw their autism as the key to their success, I would think of those whose autism has prevented them from enjoying all manner of elements of human life. Where were those people in all of that hype? Will Tyler Cowen ever write a book about them? Are they ever going to appear on the cover of Forbes magazine or whatever the fuck? No. They have been replaced; in their stead, we have members of the striving classes whose autism has never prevented them from flourishing at everything they’ve ever tried. And since “autism is not a disorder” has become the enforced opinion, those whose autism plainly is a disorder have to be marginalized - by the very people who complain about the marginalization of the “neurodiverse.” Autism has been gentrified.

This is a dynamic I now cannot stop seeing: once a human attribute like autism or mental illness becomes seen as an identity marker that is useful for social positioning among the chattering class, the conversation about that attribute inevitably becomes fixated on those among that chattering class. It becomes impossible to escape their immense social gravity. The culture of that attribute becomes distorted and bent towards the interests and biases of those who enjoy the privilege of holding society’s microphone. Because you must be able to effectively communicate to take part in the conversation, and because all of the usual privileges of class and circumstance influence whose voice sounds the loudest, the discussion becomes just another playground for college-educated urbanites. To speak you must be able to speak, literally, and you must also enjoy the privileges of communicative competence and educated-class signaling mechanisms. So we will always tend toward a conversation that defaults to the interests of the least afflicted. This is inevitable; it’s baked into the system.

We could overcome this problem if the people in the arena were dedicated to fronting (excuse me, “centering”) the interests of the most afflicted. But we can’t have that. We can’t have that because contemporary disability ideology is obsessively fixated on telling people to center themselves. That is perceived to be the entirety of the work: every individual with a disability must demand that the world sees them as “valid,” that they are just as authentically disabled as anyone else, that their ADHD grants them perfectly equal priority in receiving accommodation as someone who’s paralyzed from the neck down. The whole social culture of disability activism and studies is leveraged to support the individual’s demand for attention and proper respect; it cannot countenance the notion that there are those who we should put before ourselves. And the obvious impulse to say that someone who faces total debilitation from their disorder should, in fact, be a higher priority for the medical and therapeutic communities is treated as the height of bigotry.

I am watching, in real time, as the same process of gentrification that overtook autism overtakes mental illness.

I responded with considerable emotion to Daniel Bergner’s recent New York Times Magazine piece on psychotic disorders. I wish I had taken the time to point out that Bergner and people who are pushing that line on psychosis are good people who are no doubt well-intentioned. I personally find them powerfully irresponsible, but I’m sure Bergner and others believe they’re helping to liberate sick people. But the trouble with normalizing illness is that it inevitably cedes control of our narrative about illness to normal people. Do schizophrenics sleep under bridges in Bergner’s world? I don’t know; none are interviewed in his New York Times Magazine piece, chiefly because schizophrenics who sleep under bridges don’t have the wherewithal to speak to the New York Times. This is an ineradicable element of pieces like that, which seem to get published every six months or so: they look at a small self-selected group of people whose psychotic disorders are sufficiently manageable that they can even contemplate “letting the voices speak,” then extrapolate from there. But there are so many people out there who are sufficiently dangerous to themselves and others that simply living with their psychosis would never be possible. In Bergner’s piece, and in the minds of readers who don’t know any better, those people are voiceless - while the voices in the heads of the higher-functioning are given plenty of attention.

Our mental disorders are a part of us, and thus are inevitably a part of our personalities. I have never said that those who suffer from them should try to excise their mental illnesses from their sense of self or treat it as a troubling secret to be hidden from the world. (That would be weird, if I said that.) I have said that it’s unhealthy to define your essence through what are, I remind you, diseases. For one thing, as I recently pointed out this tactic may seem to provide succor when you’re young but will inevitably fail you when you grow older. For another, there’s this awful, prurient tendency now for young people who want to have careers as “creatives” to leverage their mental illness for book deals and YouTube hits, making themselves spectacles and trading dignity for attention. They splash their diagnoses on every part of their self-presentation online, hoping to appear cool and romantically unstable and fuckable in doing so. (“Dude, I’ve always wanted to hook up with like a really crazy girl!”) I find this psychically perverse, but it also means that their direct incentive is to not get better. If your career is being mentally ill, your financial stability depends on not effectively treating that mental illness. This leads to behaviors like the tendency of those claiming to have dissociative identity disorder to multiply their “alters” over time, to keep their therapists interested.

We used to say, “you wouldn’t stigmatize someone with diabetes, would you?” And there was wisdom in that. An obvious corollary is that you wouldn’t make having diabetes core to your identity, either; you wouldn’t try to sell diabetes as the most interesting thing about you. I don’t know why we walked away from that insight. Today we have the usual demand to have it both ways, to be seen as one’s disorder when convenient for differentiating ourselves from the pack and then setting aside that definition when uncomfortable. Again, the truly disabled can’t do this. They do not deftly craft facades from their disorders, lacking the self-control and capacity for social scheming required to do so. They aren’t afforded the possibility of ignoring their condition when convenient. Yet the voice of the ambitious and shameless patient seeking validation and coin for being sick is becoming the voice of mental illness, those unprincipled enough to treat it all as marketing. Mental illness should not be fodder for building your personal brand.

I have never said and would never say that ADHD, anxiety, depression, or any other mental illnesses are anything less than painful, inspiring of compassion, and deserving of free and accessible treatment. I want everyone who suffers under such disorders to receive sympathy and respect and to feel no pressure to justify the intensity or legitimacy of their problems. I don’t think they’re any less real or, yes, valid than any other diagnosis. I have no earthly idea why some people are so eager to join a community of mental illness - I’m guessing they wouldn’t care to be part of the herpes-having community even if so afflicted - but, sure, knock yourselves out. And of course everyone has the right to their own opinions about mental health, whether they suffer from any maladies themselves or not. I am high functioning myself, after all, and I have opinions of my own.

But there is something disordered, and untoward, about a society in which legions of successful people have suddenly discovered their diagnoses and, despite those conditions never having impeded their relentless marches up the ladder of American meritocracy, making the mental illness conversation all about them. There’s something absurd and cruel about people who have attended elite colleges and secured enviable jobs commandeering a conversation that is ethically bound to consider the interests of those who never had that chance. Of course the high-functioning have a right to partake in the discussion. But something is truly lost when the public face of mental illness ceases to be a schizophrenic person struggling to maintain their grasp on self-control and becomes instead a member of the professional class who tells jokes about their Ritalin consumption online and labels themselves #neuroatypical on Tinder. In Marianne Eloise’s mental health memoir, the problem is not that a young woman who clearly enjoys the benefits of significant family wealth tells her story of mental illness. The problem is that she does so with such an immense lack of self-awareness, and worse, that this solipsism is everywhere justified and validated by the new ideology of mental health, which tells every individual suffering from any psychiatric problem, no matter how big or small, that the only thing in the world that matters is their own personal claim to “lived experience.”

And this, finally, is my hell: mental illness will become in time just another status marker for those who have never worked anywhere but behind a laptop, a vector for competition in the great post-collegiate race, something people put down to juice their chances of getting accepted at Cornell. People hate when I talk as though there are personal benefits to identifying with these disorders, but there plainly are, or diagnoses would not decorate so many Instagram bios, would not make it onto so many scholarship applications, appear in so many gauzy celebrity profiles. In a world of repetitive scandals where white academics are caught playacting as people of color, we should be adult enough to recognize that there are perceived social and professional benefits to occupying modern identity categories. These perceived benefits do not, of course, outweigh or even ameliorate the burdens people face as a result of these identities. But they should remind us that, in 2022, there are status games at play whenever identity is discussed. And for this reason, among many others, I find the whole concept of mental-illness-as-identity so toxic, so gross, and so dehumanizing. It reorients our attention from treatment, where it should always remain, and towards vague notions of justice, whatever such a thing could mean in this context. And those who are truly sick? As I will keep on saying, whatever benefits such identification might appear to hold for them now will prove in time to be sad illusions.

There will be many who disagree with my overall point, with my vision of a healthy philosophy for mental illness and disability, with my attitude and language. Which is fine. But the challenge to them remains the same: how do you proceed with your quest to turn mental illness into a positive thing, an honored thing, a “valid” thing, without inevitably privileging the narratives and interests of those whose mental illness is least malign? How do you tell generations of young strivers that having a mental illness is cool and unique, without alienating those who feel neither cool nor unique, but only afflicted? How do you normalize mental illness without further marginalizing those who are least normal? How long do you keep insulting people who have suffered by claiming that their suffering is good, actually? How do you constantly insist that all things are the same thing, that there is some such umbrella as the “neuroatypical” under which all manner of people fall, without trivializing the struggles of the truly disabled by equating them to those living lives that are successful by any measure? How do you keep the schizophrenic and the schizoaffective and the bipolar and the borderline and the violent and the self-harming and the catatonic and the permanently deluded at the forefront of the culture? Because the way things are going, contemporary mental illness discourse threatens to do to the truly incapacitated the very thing it claims to oppose - leaving them voiceless, ignored, unheard, alone.

When I talk about this stuff and I bring up people who are too debilitated to even take part in this conversation, when I question whether we should be so sunny about mental illness given that such people exist, I am frequently told, “well, I’m not talking about them.” To which I say, precisely.