🎧You Learn from History | Chapter 21

Sarah Fay

Nov 22, 2023

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The class is in seminar mode with the students seated around a rectangle of tables, facing each other. I sit on two chairs: most of me on one, my broken foot propped on the other.

We’re discussing Randolph Bourne’s essay “The Handicapped.” It’s not an essay many people read these days. Published in 1911, it’s Bourne’s account of growing up with physical disabilities. His face was misshapen due to a doctor’s error at his birth. At four years old, he contracted tuberculosis of the spine that left him with a hunched back. He writes of the obstacles he faced. Obstacles is putting it mildly. At the time, “Ugly Laws,” as they were known, stated that people with physical disabilities (those referred to as “ugly”) were banned from being on city streets. These laws were intended to discriminate against “hideous monstrosities, which are only half human, begging for alms,” but the stigma transcended class.

Such stigma is evident in the fact that Bourne published the essay anonymously. Though I can’t begin to fathom what Bourne experienced, we have that in common. While I was sick (I’m starting to maybe, possibly, perhaps think about those twenty-five years in the past tense), I published an essay about one of my suicidal episodes. It had seemed like a good idea: writing as therapy, helping others by telling my story. But it was the first piece that came up in a Google search of my name, and I was on the job market. I took my name off the essay, which still reads On Suicidal Ideation by Sarah F. It isn’t me. No one needs to know.

One of my students, a sophomore with dark brown hair and brown eyes, asks rhetorically, “Can you believe these laws ever existed?”

When I tell them that Chicago, our dear city, didn’t repeal its ugly laws until 1974, they’re deeply offended.

After class, as I gather my things, the student who wondered why ugly laws ever existed comes to me. She’s on the list I receive from the Center for Students with Disabilities at the start of each quarter. Though I’m not told the specifics of each student’s disability, few have physical disabilities. Most come to me at some point in the quarter to talk about their accommodations and their diagnoses, which come from psychiatry’s Diagnostic and Statistical Manual of Mental Disorders.

The number of students with diagnoses—some registered with the Center for Students with Disabilities, many not—has grown exponentially in the fifteen years I’ve been teaching at universities. It’s rare to get a student with just one diagnosis. Most have two or three or four. The media talks a lot about stigma and how we need to talk about our mental health. But most of the Gen Zs (and millennials) I’ve encountered have no problem vocalizing their struggles, almost always in terms of their diagnoses being their identities.

The student tells me of her diagnoses, plural. She speaks of them easily, matter-of-factly. Her diagnoses qualify her for certain accommodations for submitting assignments late and not having to attend class. She also can’t give the required presentation.

I nod. It’s not my place to tell her that by avoiding the presentation, she won’t face her anxiety and have the chance to heal from it. I don’t mention that attempting to submit the assignments on time—developing routines and schedules—may help her.

Students deserve whatever accommodations they need but not because they see themselves as a diagnosis and therefore limited.

Young people deserve to have what I didn’t: a true understanding of what diagnoses are and what they aren’t. In a clinical setting, the ideal scenario would go something like this:

Look, we don’t know much about the brain or mental illness or mental conditions, but you need help. The diagnoses we have are designations that we clinicians use. That’s it. Historically, they were meant to give hospital psychiatrists a common language when referring to patients—never for patients to use to diagnose themselves or to think of themselves and others. Here’s the diagnosis I’m using, and this is why. Here’s the treatment I’m suggesting, and this is why. What do you think?

A more in-depth version of I don’t know. If a clinician had said this to me, maybe I would have done everything the same way. Or not. Knowing the truth, I might have seen my diagnoses as place markers, designations my clinician uses to recommend treatment and communicate with other clinicians, not my whole identity.

But I’m not her clinician or her parent, and it isn’t my place to say. Instead, I tell her she can absolutely have those accommodations but not because of a diagnosis but because she asked.

What would my conversation with my student have been like if we taught that recovery from all psychiatric disorders is possible? What if we gave students the history of recovery? What if they understood that in the 1980s, just when it seemed that the contemporary Recovery Movement would transform psychiatric practice forever, gearing treatment toward wellness, not a lifetime of illness, it both blossomed and met with near-movement-dissolving obstacles?

By that point, the Recovery Movement had its own national conference. It had gained more respect, leading to invitations to be involved in political events, psychiatric conferences, and lobbying efforts. It received more media attention, including two of the movement's leaders’ appearances on The Oprah Winfrey Show.

But it was also determined to remain outside the establishment. The movement wasn’t, as one of its leaders Judi Chamberlin explained, anti-psychiatry. “Anti-psychiatry” is a theoretical debate waged by intellectuals. The movement believed in self-help, the premise that patients could determine their treatment and lives.

As the Recovery Movement gained momentum, different factions arose, each with its own goals and approaches. Some patient-only advocacy groups sought funding from governmental organizations to provide services that would complement available psychiatric practices. Many didn’t hold the same views as the more vocal members. They believed reform was possible and wanted to work within the system.

Ironically, the splintering within the Recovery Movement occurred because more people wanted to join in the fight for better treatment for people with mental illnesses. Family members seeking secure services for their loved ones started their own movement. They eventually founded what would become the National Alliance for Mental Illness (NAMI), one of the most powerful mental health advocacy groups in the country.

But the families didn’t fall in line with the goals and outlook of the Psychiatric Survivors Movement. Families questioned aspects of the mental health system but pleaded for more—or in some cases, any—resources. They doubted that hospitals were beneficial, even in a crisis, and knew that the longer patients remained in inpatient care, the more likely it was they would become “chronic” cases. Heavy doses of psychotropic drugs didn’t help. And consumers needed transition programs that would assist them in moving from inpatient care to living and working in the community again. But they wanted to work with the government and other bureaucratic entities and believed psychiatry could be reformed.

Terminology was a sticking point. Families adopted the term consumer when referring to patients. Survivors and ex-inmates like Judi Chamberlin rejected the label. Although families said that consumer suggests having influence over the mental health system and inverts the typical power imbalance, Judi Chamberlin reminded them that she’s a consumer when shopping for a refrigerator, not when being involuntarily committed.

Members of the Psychiatric Survivors Movement, particularly those who’d experienced horrific abuse while hospitalized and had since fully recovered, didn’t believe those without experience of mental illness could or should set goals and assume leadership roles. According to a 1990 article by Judi Chamberlin, published in the Journal of Mind and Behavior, groups that let in mental health professionals and non-patients pivoted away from the movement’s militant liberation stance and adopted a reform-from-within approach, which went against their goals.

Politically and economically, the 1980s promised to deepen the mental health crisis. Strides made under the Carter administration during the 1970s didn’t last. President Carter’s Mental Health Systems Act, which funded community support systems (MHSA). The MHSA hadn’t answered all the issues like lack of access to services, neglect of those from marginalized groups, the shortage of clinicians, and the burden on families, but it attempted to establish the community mental health centers the country so desperately needed. President Reagan had been in office only seven months before repealing most of it. Although the Patients’ Bill of Rights remained, it remanded funding of mental health services to individual states. That meant the country didn’t have a unified national mental health system. We still don’t have one.

Reagan also “cleaned up” the disability benefits (SSDI) program to get rid of the “freeloaders,” making it difficult for those with mental illnesses to stay on disability. It isn’t possible to conjure up mania or depression to prove to a disability claims reviewer that you’re disabled enough to warrant assistance.

Reagan’s attitude toward people with mental illnesses receiving disability services added to a growing list of stigmas. Those in the Recovery Movement used the terms mentalism and sane chauvinism to describe the public’s negative assumptions: that we’re incompetent, violent, irrational, hopeless, and, now, trying to game the system.

Despite Reagan’s evisceration of mental health funding and support, recovery and the idea that those with lived experience of mental illness had much to contribute to the mental health system started to gain traction. One of the first peer advocacy groups, On Our Own (which took its name from Judi Chamberlin’s book) received federal and state funds, including a grant from the National Institute of Mental Health (NIMH), to turn the Conference on Human Rights and Against Psychiatric Oppression into the more inclusive Alternatives Conference. It continues to promote “alternative understandings to traditional biomedical models of mental illness, including trauma-informed paradigms that view distress as a response to marginalization and violence.” It champions peer support as the key to reforming our mental health system and has united consumers and family members with the goal of giving patients not maintenance but recovery.

The Recovery Movement experienced an important but not well-publicized windfall in 1987. The same year I was admitted to my first intensive outpatient program and my psychologist told my mother and me that I’d never recover and would likely die as a result of complications from anorexia, Courtenay Harding published the landmark Vermont longitudinal study of people with schizophrenia. Harding was a registered nurse studying research psychology at the University of Vermont. She was tasked with following up with patients who’d been diagnosed with schizophrenia in the 1950s. A long-term psychiatric study of its kind had never been done. Schizophrenia was thought of as chronic or deteriorating at best and hopeless and incapacitating at worst. But Harding found that one-half to two-thirds had “achieved considerable improvement or recovered.”

If that was true of schizophrenia, what of other supposed chronic, hopeless disorders? Harding would later point out the grave effect of calling any mental illness deteriorating or chronic or lifelong. She writes: “These perceptions about schizophrenia have pervaded and guided clinical judgments, treatment programming, policy formulation, and decisions about priority for funding.” We don’t recover without being given the means to do so, yet some of us, as Harding showed, somehow manage it anyway. There’s no reason it has to be this way nearly half a century later. As Harding wrote, “These perceptions have also stripped hopes of recovery from patients and their families.”

If my students knew about these moments within the Recovery Movement’s history, that conversation would have been based on using accommodations to further her potential, not reinforce her limitations. If someone needs accommodations, they should be provided, not used to stigmatize or self-stigmatize.

I’m biased, but we should teach it in schools—all of it: the fact that diagnoses are tools used by physicians, not identities to assume; about the seminal figures who have fought for the rights of people with mental illnesses; and that the possibility of recovery.