Schizophrenia, stigma and systems hold so many back, which made it tough to celebrate my hard-won tenure

Three months ago, I was officially notified that I’d received tenure (and promotion to associate professor) in the School of Social Work here at the University of Pittsburgh. Tenure is a big deal for anyone — even against a backdrop of escalating political hostility toward higher ed — but particularly meaningful after a history marked by experiences in which I’d been told, over and over, that I wouldn’t or couldn’t make it.

The first graduate program I joined, in Chicago in 2007, terminated me. The program director explained to me that allowing “someone like me” to continue in higher education would be unethical. Why would that be? Because, as he put it, I had no hope of ever working and repaying student loans, hence it would be unethical of him to allow me to continue taking classes.

This communication immediately followed a graduate faculty meeting in which, for nearly an hour, I sat at an oval table, surrounded by leading social and political philosophers who I had worshiped for years. They discussed my case and opined on the reasons I should be terminated from the program in spite of a 4.0 GPA.

What was the actual underlying reason? A schizophrenia diagnosis.

The fact that, pre-Affordable Care Act, I would immediately lose my student health insurance didn’t cause the program director to waver in his conviction that exclusion was in fact the moral way to proceed.

When I finally approached the school’s Title IX Office a few months later, the case worker I was assigned first asked why I had never filed formal paperwork with the Disability Services Office. They then explained that unless I wanted to rejoin a program I “was not wanted in,” there would be no purpose in filing a grievance. The only way I could hold back a flood of tears was to leave without explaining.

I actually had initiated the disability documentation process a year earlier, and the office’s director, upon hearing that my diagnosis was schizophrenia, informed me that “we don’t have students with diagnoses that severe here” and that I should “reconsider graduate school.” I fled, sobbing, and I could never bring myself to return.

Discrimination in the context of higher education is, of course, the tip of the iceberg when it comes to social and political responses to schizophrenia in the United States. Whereas we have seen substantive improvement in attitudes for diagnoses such as depression and anxiety over the decades, stigmatizing attitudes toward schizophrenia have demonstrably worsened, with increased belief in the “dangerousness” and “unpredictability” of those so labeled. Simultaneously increasing are endorsements of involuntary treatment as a necessary (and perhaps inevitable) systems response. Indeed, pro-coercive policy-making has become a rare point of bipartisan agreement, with deep blue states such as California among the biggest champions of an expanded carceral system of mental health care.

Su ffering in the system

I cannot claim the worst experiences of public mental health. For example, I have never been subject to mental health intervention within a prison or jail. But I’ve had my fair share of more “everyday” experiences of disempowerment, objectification and dehumanization within “service” settings.

Indeed, few experiences have done more to damage my self-esteem than the years I spent immersed in the public mental health system in Chicago. As a service user with schizophrenia, I experienced treatment that has been amply documented in other people’s first-person accounts and testimonies. I was consistently treated as if every claim I made was suspect or delusional. Once, when hospitalized, I explained that I was a doctoral student, and the charge nurse responded, “And I’m the Queen of England.”

In some cases, providers spoke to those accompanying me as if I couldn’t understand the English language at all. For example, once in a county facility, the nurse turned to a friend, saying, “I can’t say this officially, but I’ve seen so many of ‘em and she’s a textbook schizo.” For years, following program termination, I felt that all I was and had once hoped to be had been reduced to an object to be medicated with more antipsychotics, different antipsychotics, long-acting injectables or the so-called drug of last resort, clozapine . Almost by definition, my most central experiences were labeled as delusions, paranoia and hallucinations with little or no (mostly no) meaning — and certainly no social value.

A ‘cosmic joke’ that set up my success

I finally got back into school in the most unlikely and idiosyncratic of ways.

A few times after my termination, I had considered applying to academic programs. When I approached former professors for letters of recommendation, they almost universally demurred.

However, while I was still a philosophy student, I had taken a single graduate psychology course, and the professor, at the time, had remarked that my talents were wasted in the humanities. In summer 2010, wholly unexpected, I received an email from this professor, explaining that one of their accepted psychology Ph.D. students had decided not to start the program, that they were in a bind, and she was wondering if I might want to take the slot.

It was the sort of thing that virtually never happens in doctoral admissions, and my initial reaction was to see it as a kind of cosmic joke. My therapist, however — one of the few people I’ve worked with in the system who truly dedicated herself to empowering her clients, myself included — told me I most certainly should do it.

And so, mostly due to almost-unheard-of luck, I ended up pursuing a Ph.D. in psychology. From that point on, my driving motivation has been the pursuit of research, technical assistance and policy intervention designed to bridge huge gaps in perspectives and priorities between the service users impacted by policies, and the administrators, clinical leadership, researchers and policy-makers in positions of power.

I spent years in a variety of roles in and out of public mental health, logged over a hundred academic publications plus public-facing guidance materials and reports and landed major research grants. Nonetheless, tenure — after so many years spent believing such an accomplishment was impossible — registered as a surprise.

Perhaps inevitably, my feelings were mixed. On the one hand, I felt relief and a sense of greatly expanded freedom to speak out about the discrimination I (and many others) experience.

But I also felt guilt, because such a success stands so obviously in contrast to the hundreds or thousands of brilliant individuals with significant disabilities who have been locked out of academia entirely, for all the wrong reasons. Guilt, too, because whatever social status I now have, it is certainly not the status afforded to people with schizophrenia as a group.

For most people diagnosed with schizophrenia, the more normative outcomes are institutionalization, incarceration, unemployment and poverty. And why these outcomes?

For one, we continue to implement policies which, at best, support survival, but hardly enable flourishing. Finding oneself forced to subsist on Supplemental Security Income, set at 80% of the federal poverty limit, is hardly flourishing. Living in a segregated nursing home, single-residency unit or, for far too many, on the streets, is certainly not flourishing either. And these policies persist in no small part due to the ongoing exclusion of those directly impacted from leadership roles and meaningful inclusion in key decision-making processes.

Local supports lacking

Here in Allegheny County, we see only the most bare-bones forms of inclusion and integration of those directly impacted by schizophrenia and other serious mental illnesses [SMI], whether in county and city policy contexts, civic life more broadly, or the training and education of counselors, social workers and other system providers. Locally, the stories I hear from service recipients are often gut-wrenching: stories of restraints, seclusion and involuntary injections in area hospitals, discharge without linkage to adequate services and supports, and entrenched poverty.

The county’s handling of individuals with SMI facing minor criminal charges, as documented in investigative reporting , should shock the conscience of all who live and work here. So should Allegheny County’s report on the outcomes of individuals involuntarily hospitalized here. These reports describe treatment and outcomes that we should collectively view as unconscionable. The services we do offer all too often reduce complex, meaning-laden experiences to meaningless symptoms of disorder or illness, alienating those seeking services rather than engaging them in healing and care. And they (we) generally have no seat at the table.

Rather than celebrating my own isolated, individual success, I want to close with a call to action — necessarily also a call to inclusion — directed at local government administrators, housing, social welfare and health system leadership, and universities and training programs engaged in the education of future providers. At some point, we must all stop, take stock and understand that local conditions are unacceptable. The policies, practices and outcomes referenced above are unacceptable. Failure to visibly include and center those directly impacted is unacceptable.

We all bear responsibility for the way things are — and an ethical obligation to change it.

Nev Jones is faculty at the School of Social Work at the University of Pittsburgh and will be an associate professor with tenure in fall 2024. Jones and can be reached at nevjones@pitt.edu.

Read more essays on the Pittsburgh experience:

Pittsburgh apologizes for the inconvenience

Family health scares and a historic tragedy spur me to champion Pittsburgh, not leave it

Pittsburgh’s decaying ‘Death Stairs’ are an indictment and an inspiration

My American Dream ended on a deflated air mattress in a run-down Squirrel Hill apartment

Mulling an environmental disaster in a Colorado bar surfaced my deep (and complicated) Pa. roots

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