triumph of the diagnostic?

(at least) two opposing narratives on disability and freedom

the Ed Roberts campus at UC Berkeley includes this bright red celebratory ramp, via

I have just spent weeks teaching my graduate students in architecture about disability in the built environment. We’ve looked at adaptive cardboard furniture and architecture for dementia. We visited the Boston Center for Independent Living. We navigated city crosswalks in the company of Julia LaGrand, a violin conservatory student who’s also blind. We read about DeafSpace, about tactile museum tours. I could have spent weeks more on this unit. The inventiveness in design is endless.

We also read and watched films about Ed Roberts and Judy Heumann — two of many American polio survivors in the mid-20th century who came of age in the civil rights era and took up its causes accordingly. Biology is not destiny, they said. Like race or gender, the body’s markings, its capacities and morphology, are not the totalizing definition of a person. Roberts and Heumann refused to be diminished as merely clinical “cases.” The Independent Living Movement was premised on an idea of liberty that meant not “self-sufficiency,” as Heumann famously said. Instead, it meant “self-determination”—becoming the protagonist of one’s own life, not only the object of others’ decision-making.

For people like Roberts and Heumann, freedom would be realized in a broad left coalition for universal human rights: recognizing full personhood for each human being, irrespective of ability. People with all kinds of disabilities have formed those coalitions not based on specific bodily needs, but on a shared wish to de-medicalize human worth. To be recognized as citizens, and not (or not just) patients, with all the actionable guarantees that citizenship entails. The best examples of design for disability perform this broadening task, making more of the world accessible and flexible where it had been rigid and exclusionary. It’s the oldest and still-challenging democratic project—pluralism, capacious and supple, seeking common goods masked by difference.

assistive device support from cardboard carpentry at the Adaptive Design Association, via

However! This time I ended the unit with the big looming counter-narrative of disability laid out by sociologist Joseph Davis: “All Pathology, All the Time.” In the same decades of increased inclusion in schools, de-stigmatizing difference, better technology, and adaptive fashion, a paradoxical development has closely followed: not de-medicalization but rampant medicalization, a clamor for ever more labels and distinctions, an expansion of the medical purview over more realms of human variation and activity.

We have grown accustomed to hearing that yet another behavior, emotional state, temperament, or bodily experience — some feature of life not previously regarded as a syndrome or disorder or addiction or risk factor — will henceforth be defined and treated as a medical problem. Those unhappy with their shyness or fear of criticism may be diagnosed with social anxiety disorder. Women not sufficiently interested in sex may be diagnosed with female sexual interest/arousal disorder. Kids who do not pay adequate attention to their studies may be diagnosed with attention deficit hyperactivity disorder. (One fifth of America’s twelve-year-old boys have been.)

Why, in an era of rejecting scripted ideas of “normal,” wouldn’t we see at least as much contraction in medical diagnostics as we do expansion? Davis can only find three or four historical examples of de-medicalization in the last half century. The dominant trend is more: more labels, more professionalized treatment, more medical records making variation into pathology.

Demedicalization … might be thought of as the process of raising the diagnostic thresholds for a condition so that it captures only serious and debilitating clinical cases. By this process, what the psychiatrist Peter Kramer once called “diagnostic bracket creep” would be reversed; cases sometimes referred to as “mild disorders” and “subthreshold syndromes” would be eliminated. The domain of pathology would shrink, and far fewer individuals would be subject to medical management.

But this reversal too appears to hardly ever happen. The solution to the “unreal” ADHD epidemic that [DSM-5 director David] Kupfer noted would have been to change the criteria for the diagnosis so that kids with mild “symptoms” are not diagnosed or treated. But instead the DSM-5 lowered the thresholds even further. The unreal epidemic got worse. More youth qualify for the diagnosis, which is now also skyrocketing among adults.

In the long legacy of civil rights that fought hard to shed labels and bring our shared humanity into the foreground, what explains this parallel phenomenon? I was treading lightly in class, knowing that my own students are most likely affected by the dramatic uptick in anxiety and depression among young people. But I felt like I had to raise it: Why is medicalization now so rampant, and what other social factors compound it? We might name profit motives—big pharma, but also identity-tagged social media algorithms that incentivize and distort classic in-group behaviors. We might point to the demotion of the family in civic life, which encourages nervous parents to outsource expertise. We might point to one of Davis’s own explanations in his book—that a purely materialist description of the entire self means that all inconvenient human variations are indeed physical glitches and therefore framed as problems to be solved. If the self is just chemistry, then everyday suffering—understood to be a non-negotiable feature of every mundane human life by all the world’s major wisdom traditions—is reducible to mechanics, just in need of more precise diagnostics.

Perhaps you might say: these numbers reflect a misplaced structural complaint. At long last, a statistically significant number of people are willing and able to say that the status quo arrangements of schools and workplaces are excessively shaped by capital and its demands for productivity, efficiency, turning the person into a cog. I think this is half-true, perhaps? And also complicated by the empirical facts of young people’s real distress. Objective measures like suicide and self-harm are also up, which doesn’t indicate a lot of success so far in the medicalization boom.

To be clear: Human suffering is real. No one should be in the business of grading and adjudicating what’s happening in the interior worlds of others. The question is whether medicine has sequestered for itself, or has been forced to absorb, both biomedical and existential matters. What is the nature of everyday variation and everyday suffering? And what resources might name or mitigate them? What freedom comes from escaping labels, and what freedom comes from grasping for them?

This paradox gets weirder still. There are some big flashy examples of de-medicalization—like that NYT story about folks refusing anti-psychotics in favor of “hearing voices,” and there are critics like Freddie deBoer who reject this kind of de-medicalizing, saying that the problem in the case of serious mental illness is, if anything, under-diagnosis (and the failure of our health care system to properly and thoroughly treat these conditions). There are parents like me, who are aware of how recently the invention of IEPs and accommodations granted our children even the most basic rights to mainstream classrooms—and are therefore a little bewildered at the dramatic rise in disability accommodations claims at the most elite universities in the world. It’s never been less clear what a politics of recognition looks like, much less a true liberation.

Near the end of Robertson Davies’s novel The Manticore, a therapist tells a patient that he has done the good psychological work of figuring out who he is—articulating the family origin story, surfacing his mixed motives. The therapist then charges him with the deeper task: knowing what he is. Disability, as ever, offers a prismatic view of the human person. Its capacities and limitations, its normal curves and the edges of those same curves—they invite us to probe the deepest question of all. What is a human being for?

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Thanks for reading. I’m enjoying Northeastern! And working on a film. An architect, a woodshop, the history of machines, and the art of one-handed tools.

A bunch of other new project updates coming in a month or so. Magazine piece, museum acquisition, new studio! And I’d be happy to hear from you.