What's the Problem with Disability Studies and the "Disability Rights" Movement?

self-appointed spokespeople don't own disability issues

I’ve written a lot of pieces critical of specific elements of the disability rights/disability studies movement, but I haven’t put out an overview that summarizes the big picture. (Disability studies is an academic field, and like many in that milieu there’s precious little diversity of opinion within it; disability rights is a catchall term frequently used by activists.) I’ll have to write a book to do it all justice, but here’s a primer. Please note that in almost all cases the people who are responsible for this stuff have good intentions; indeed, that’s part of what makes it all so frustrating and at times tragic.

Disability rights rhetoric implies a community of the disabled that does not exist. A common problem with identity politics is that those who practice it often imply unanimity within broad groups that doesn’t exist. (For example, in my recent book I refer to the common implication that all Black Americans supported defunding the police in 2020 and point to a lot of polling demonstrating that no such thing was true.) There are sometimes commonalities that are shared by a large percentage of a given group, but “people with disabilities” is an unusually broad and varied group even compared to others. This is true because all kinds of people can be afflicted with all kinds of disorders, making it unthinkable that we’d ever see (for example) rigid attachment to a given political party among the disabled. More, the experience of disability is dramatically different depending on a given ailment - you can refer to people with psoriasis and with anxiety and with ALS all as “people with disabilities,” but that’s a meaningless exercise; there’s no shared experience there. Finally, many people with disabilities reject being defined that way, which has inherent political and social consequences. All of this diversity undermines any faith we might have in seeing those with disabilities as a coherent political group. Disability activists are forever purporting to speak for all people with disabilities even as many such people completely reject the activist agenda. There is no organizing committee for people who are sick. This has particular consequences given the next point.

Normalizing disability inevitably centers the most normal and sidelines the most severely afflicted. When you insist that there’s nothing wrong with people with disabilities, you are inherently (if usually unwittingly) pushing people who obviously have something wrong with them out of the conversation. This is core to Amy Lutz’s recent book - autism self-advocacy partisans are so insistent that having autism is not in any sense negative that they have to sideline those whose autism is clearly negative, as it is with profoundly autistic people who are nonverbal or self-harming or unable to control their bathroom function or similar. Such people are an uncomfortable reminder of what autism specifically and disability generally can do, so they are marginalized by those who prefer to maintain a false positivity. Worse still, they can’t speak at conferences or make YouTube videos or tweet and otherwise can’t speak for themselves. The prototypical example of this dynamic is the 2022 incident where student activists forced Harvard to cancel a panel on autism because the panel’s description referred to treatment, which the activists rejected based on the logic that there’s nothing wrong with autism. The profoundly autistic could very much benefit from more and more effective treatment, as could their families, but they are definitionally not able to self-advocate in that way - the profoundly autistic don’t go to Harvard, only the least-afflicted do. Their families, meanwhile, are dismissed through reference to standpoint theory, the obviously broken logic of “nothing about us without us.” Anyone who can’t express themselves in a conventional way, whether thanks to cerebral palsy or autism or schizophrenia or any other condition, finds themselves written out of the debate.

Once disability becomes identity, treating disability as something bad becomes forbidden. Contemporary disability mores are deeply influenced by the social model of disability, which holds that disabilities themselves are not inherently or intrinsically bad but rather that society has not set itself up in such a way as to accommodate those with disabilities. It’s certainly true that we should do far more to make the world more accessible, but I don’t think that attitude is productive. I’m perfectly happy to say that being sighted is better than being blind regardless of how society sets itself up, and for the record there are many people with disabilities who find it insulting and callous to be told that there’s nothing wrong with them. Either way, insisting that you simply are your disability sacrifices your autonomy and right to self-define on the altar of an identity that you didn’t choose. Personally, I’m horrified by the thought of being defined by my mental illness, which for obvious reasons is the part of myself I like the least. And impressionable people who absorb this ideology can become less likely to commit to treatment, given that treatment would under that logic suppress their most fundamental selves. The goal with medical conditions should always be to cure them or, if cures are unavailable, to mitigate and minimize their effects through treatment. Illness-as-identity obstructs that basic effort.

Disability is trivialized by these social practices. I’m not picking on this particular person, just using this video as an indicative example. This is, to me, perfectly indicative of what mental health culture has become in our current era. The attitude displayed here is very common in some online spaces dedicated to mental illness. The woman who made this video was no doubt celebrated for it, given that she displays no “stigma” about her undefined, multiple mental illnesses. On the contrary, she seems supremely confident and treats them as objects of fun and humor, exemplifying today’s empowered and unapologetic disability “self-advocate.” Good for her! But now consider someone whose schizophrenia has ruined their life - has brutalized their family, robbed them of all their friends, ruined their career prospects, driven them into addiction, left with disease or dysfunction or a criminal record, and in general cost them the basic elements of a happy adult existence. Would that person not have good reason to find this sort of thing insulting and alienating? How can we build an inclusive mental health culture (if in fact we even want such a thing) by constantly treating the topic with irreverence, and indeed shit-eating jokiness, when those are so far from the experience of so many mentally ill people? For many or most, the experience of mental illness is unrelentingly hard. For many with other kinds of disabilities, their experience is one of constant pain, inconvenience, and discomfort. The social dictate to treat your disability as a positive, no matter how much it has hurt you, is bad enough. This collapse into a cutesy, self-impressed culture of giggling about conditions that have ruined and ended lives? Infuriating.

Stigma is nobody’s biggest problem. I’m frequently accused of drawing all of this from social media, but that’s not remotely the case. I have my own experience with the mental healthcare system, which is ongoing, and see things happening in therapy and support groups and assorted. I read constantly and try to stay abreast of the academic literature and trends in the nonprofit world. And I have a large network of people who get in touch with me and tell me about their own experiences. The monomaniacal focus on stigma is a good example of a problem that’s definitely not just an internet phenomenon. NAMI, the National Alliance on Mental Illness, is an influential and important body that does a lot of good work; I myself have attended their online support groups dozens of times. I’m grateful for them. But like so many in that space, as an institution NAMI has become obsessive about stigma, putting it front and center in their agenda and devoting an immense amount of time and energy into combatting it. And I just don’t think that makes sense. A deeply mentally ill person who lives under a bridge has a lot of very real problems, and stigma is not one of them. People who are confined to wheelchairs face stigma, but stigma is not close to being their biggest challenge. Almost no one who suffers from a serious disability is going to name stigma as the highest hurdle they face. Access to healthcare, housing, and food, achieving basic financial stability, grappling with hopelessness and depression, finding community and love…. All of these things come first. But because of the incentives of identity politics, stigma reigns as the object of fixation. After all, it’s the habit in identity politics to treat all problems as problems of manners and of mind. And fighting stigma is attractive because it’s theoretically easy and free to accomplish - people just need to stop stigmatizing. In fact, people with disabilities have much deeper problems, and orienting the conversation such that stigma sucks up so much attention is good for very few disabled people.

Refusing to frame disability as something negative makes the concept of reasonable accommodation incoherent. Disability activists are rightly aggressive about defending the doctrine of reasonable accommodation, which holds (as is enshrined into law by the Americans with Disabilities Act) that those with disabilities should be afforded reasonable accommodations by public institutions, such as by building ramps that can accommodate wheelchairs or braille signage for the blind. The trouble is that the moral logic that underlies accommodation stems precisely from the notion that disabilities present hindrances or drawbacks, are negative, and we as a society need to work to help those with them to overcome those hindrances and drawbacks. But we’ve already dispensed with that assumption, right? Which prompts a question: if disabilities aren’t bad, what do we need to provide accommodations for? The social model says that disability is simply the product of a society that doesn’t accommodate all people. This has serious moral and political consequences. While I believe in a society that cares for all people and gives them all that they need regardless of their condition, most human beings support social spending and public policy because of a perceived unfairness at play - they’re willing to tolerate tax money going to food stamps because they think people shouldn’t suffer from hunger but also because they can imagine that their financial status is out of their own hands, that they’re the victim of a drawback or hindrance that creates the problem. If you tell people that food stamps are only for people who are different, not for those enduring some sort of vagary of fate, you’ll find it suddenly much harder to get public support. So too with disability. “Disability is bad and unchosen, so we should help people deal with their disabilities” is sound moral logic and good politics and I have no idea why we’d abandon it.

“Accommodation creep” is an inevitable outcome of making disability just another site of identity struggle. As someone who’s written about this stuff for years, I’ve heard from many readers about accommodations that are made for people with dubious disabilities, or which involve obvious bad consequences that may make the effect net-negative, or both. Sometimes this stuff is just ridiculous, such as those who have told me about emotional support tarantulas and snakes. Sometimes, though, it causes very meaningful conflicts of values. Over the years I’ve heard from at least a half-dozen college instructors who were teaching classes where a majority of the students had a diagnosis (mostly ADHD, sometimes a learning disability) that entitled them to special accommodation; sometimes, it’s been as much as three quarters of the students or more. This is perfectly predictable - we’ve trained helicopter parents to ruthlessly pursue whatever advantage they can get for their manically-striving children. But so much accommodation leads to a discomfiting question about when accommodations for some students become an artificial disadvantage for others. If you’re one of a handful of students in an organic chemistry class who don’t get extra time on the test, and the kids who do are your competition for scarce slots in med school, wouldn’t that feel like injustice? The entire system of reasonable accommodation defined by the Americans with Disabilities Act was created in a context in which there was no reason to believe that the number of people requiring accommodations would rise dramatically in the future. But as we’ve relentlessly attacked the stigma that attends disability, the social disincentive has faded away while the identity-formation and personal branding incentives have grown, and so too has the temptation to cynically take advantage of the accommodation system. This can’t help but undermine public confidence in the accommodation mechanisms of the ADA, which already face serious legal challenges.

Ramping up the rhetorical and social stakes leaves us incapable of calling bullshit bullshit. As is always the case, the rise of identity politics in disability discourse has created a state of constant emotionalism, threat, and fear. People are afraid to engage because they expect, correctly, that saying anything that contradicts the activist crowd will simply result in them being called bigots. This causes problems all over our debates, but appears most glaring when it comes to the stupidest issues. For example, despite dogged insistence to the contrary, it is not the case that there has been a sudden massive increase in the prevalence of late-onset Tourette’s syndrome among adolescent women with TikTok accounts. There has not been some sort of incredible change to the epidemiology of Tourette’s, and essentially no one really believes that there has been. Instead, a lot of young woman started pretending to have Tourette’s syndrome out of a desire to belong and to differentiate themselves from their peers in the marketplace of attention, and as they were rewarded in that marketplace others responded by doing the same thing. Similarly, there has not been a sudden increase in dissociative identity disorder among very-online adolescent women, given that DID is a controversial diagnosis and the disorder known for its extreme rarity. Pretending to have multiple personalities is fun and edgy so some teenagers have done it a lot recently.

Kids do dumb things and I’m not particularly mad about it. I do, however, think that if it goes unchecked this stuff could have serious negative consequences for how our culture views mental illness. What’s striking is how scared many people seem to be about calling this obvious bullshit out as obvious bullshit. When I talk about this, I press and probe and ask people if any of it passes the smell test. And just about nobody says “Yes, it’s credible that there are more authentic cases of dissociative identity disorder in my TikTok feed than there have been confirmed cases in medical history.” Nobody’s that dumb. But they’re unwilling to just say, yeah, that’s bullshit. They ummm and they uhhhh and they tiptoe around and they dance, and they do so because they’ve absorbed the attitude that criticizing anyone’s specific claims to disability means that you’re somehow callous towards disability in general. They also won’t call bullshit on bullshit because they’re afraid of being tarred with the “ableism” accusation. The whole thing makes it harder for us to think and talk intelligently about how to best accommodate disability in our society. Lutz, for example, has written and spoken with extraordinary care about autism, and has the personal experience of raising a nonverbal adult son with profound autism. She’s endured tons of invective from the activist class for her trouble. That’s fucked up and doesn’t help anyone.

Case Study: Involuntary Commitment

The issue of involuntary commitment - when people with severe mental illnesses are forced into treatment to protect them and others - is a good case study, in part because it’s closest to my lived experience. The argument in favor, as out of fashion as it might be, is simple. Some mentally ill people are in fact more likely to commit violent crimes than others, no matter what activists say, and we have a responsibility to protect others. People with mental illness are also dramatically more likely to commit suicide, and we have a responsibility to protect them. Meanwhile, appeals to the rights and autonomy of those who might be committed ignore a central fact: mental illnesses hijack the rational mind, preventing those who suffer from them from making informed and fully-conscious decisions about care. Psychotic disorders such as schizophrenia, bipolar disorder, and schizoaffective disorder cause delusional behavior and paranoid ideation that prevent clear thinking. Appealing to the autonomy of those suffering in that way makes no sense, as there can be no autonomy without rationality. There can be no right to self-determination when the self is not making determinations. Someone who believes that the CIA has implanted a mind control chip in their teeth is not someone who is in possession of the necessary understanding to make adult decisions, any more than a four-year-old is. This is not a complicated argument.

Of course we need to be vigilant about protecting the rights of people who are not an immediate danger to themselves or others. But we’ve had 60 years of developments that make involuntary treatment harder - the Community Mental Healthcare Act, Medicaid, O’Connor v Donaldson, the ADA, the Civil Rights of Institutionalized Persons Act, as well as a great deal of institutional policy and case law have made it harder to get psychotic patients into treatment and even harder to keep them there once they’re in. Anti-psychiatric sentiment is remarkably prevalent and powerful in American life, and it dovetails with activist politics that centers the independence of the individual patient above all other things, including above their immediate health and life. (Thus the phrase “dying with your rights on,” originally coined in the 1970s in reference to a anorexic woman who won her freedom from involuntary treatment to great fanfare and then promptly starved to death.) The notion that we’re constantly throwing people into involuntary treatment without review is not consonant with the facts, despite the claims of a particularly animated set of angry patients. Jordan Neely lived a miserable existence and then died a violent death, and yet when I argued that he could have been saved by involuntary treatment, I received an immense amount of angry pushback.

How does disability activist rhetoric make the debate about involuntary commitment worse?

• Insisting on the preeminence of individual autonomy when it doesn’t make sense. Because they’re porting ideas and vocabulary from our debates about race and gender, disability activists are constantly motivated by the idea that the fundamental problem is oppression of and disrespect towards fundamentally autonomous and rational people. They therefore tend to insist that any given mentally ill person must be an empowered and self-actualizing agent in the world. But people with serious mental illness often simply aren’t. You can’t just borrow the concept of advancing the desires of people of color or women or LQBTQ people and apply it to the grim realities of psychosis. That ignores the very condition that defines them as disabled in the first place.

• Optimism is limitless when the problems are theoretical. The disability activist class is overwhelmingly made up of the highly-educated, upwardly-mobile, internet-savvy and culturally elite. They are also, as I said, necessarily and forever not made up of those with the most severe cognitive, communicative, or behavioral impairments. This means that they struggle to effectively occupy the mindset necessary to really grapple with profound human tragedy, such as those who need to be forced into treatment. Again the example of the Harvard activists who shut down that panel is instructive - it should not surprise us that a bunch of dubiously-afflicted academic 1%ers were incapable of considering, or unwilling to consider, the needs of autistic people who are not like them. So too with involuntary commitment; so many of the nonprofit types are adamantly opposed to the practice because they have no ability to consider a life so badly broken that such drastic action is necessary. Instead they can advance the sunny, false optimism that suggests that everyone can “live with the voices,” while people with severe mental illness endure great risk to their lives and health.

• Standpoint theory breaks down completely here. Standpoint theory, or the idea that only those who occupy a given identity can speak effectively about that identity and related issues, has never made sense to me. It simply is not the case that the people who are most involved in a given issue are the most clear-eyed and sober about it; indeed, it’s often the opposite. (I would not expect a diehard fan of a football team to give me the most unbiased take on that team’s chances.) But when it comes to mental illness, the concept simply collapses. The term “psychotic patients” inherently denotes a group of people who have profound limitations when it comes to understanding their own condition. That’s what makes these conditions so tragic! Psychotic disorders entail irrational beliefs, including the intense paranoia that drives so much unfortunate behavior and which is so often implicated in acts of violence committed by the mentally ill. A major challenge in addressing any kind of mental disorder lies in helping people understand that their intuitions about themselves and their condition are faulty. Insisting that we privilege the perspective of those who are most directly affected by involuntary treatment makes no sense. What’s more, activists never acknowledge that there’s another set of stakeholders who have every right to be involved in the conversation: the members of the public who could potentially be at risk if a patient is not involuntarily treated. Such people don’t occupy a privileged position in social justice discourse, but their interests are perfectly legitimate. And, if we care about building a humane mental health policy, it’s essential that we make them happy; they are the voters that pass the laws. “Nothing about us without us” just makes no sense here.

• When all else fails, just call people ableist. Voluntary commitment is an achingly complex issue, one which requires remarkable nuance and the careful balancing of legitimate interests. It’s uniquely ill suited to yelling and the application of broad epithets. And yet I can tell you that, when I argue that involuntary commitment remains an indispensable medical tool and that demonizing it is misguided, that’s exactly what I get - yelling and epithets. The term “ableist,” which is really just a way to say bigot, is thrown around endlessly. That’s good for nobody.

There are places where I can very happily agree with disability activists, including the two most important: increasing public investment in healthcare to expand access, and continuing to improve accessibility in our public spaces. The tattered quilt of America’s health system desperately needs reform, and those with disabilities are among those who need such reform the most. And there are still an immense number of places in the United States which remain inaccessible to those with disabilities, while the system to enforce the ADA is inefficient and problematic. I would gladly join with disability rights activists to fight for change in both of those domains. But I also think that attitudes towards disability have evolved in a very unhealthy way in the past several decades, this has profound potential consequences for treatment and the law and policy, and I’m sick of being told that it just doesn’t matter. As always, to develop a healthier culture regarding disability, we all have to think carefully, speak freely, and challenge those who demand that only they get to decide what’s right for everyone.