Overcoming stigma as a schizophrenia scholar

Three months ago, I officially 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 in a climate of increasing political hostility toward higher education, but it is especially meaningful for me, as I have a history marked by so many times being told that I “won’t” or “can’t” succeed.

I was fired from the first graduate program I attended in Chicago in 2007. The program director explained that it would be unethical for “someone like me” to continue in higher education. Why? In his words, I had no hope of working and being able to pay off my student loans, and therefore it would be unethical to allow me to continue taking classes.

This contact came on the heels of a graduate faculty meeting, where I had been sitting at an oval table for nearly an hour surrounded by leading social and political philosophers whom I had long admired, as they argued my case and gave their opinions on why I should be removed from the program despite my 4.0 GPA.

What was the actual underlying reason? A diagnosis of schizophrenia.

Before the Affordable Care Act, I would have immediately lost my student health insurance, but that didn’t stop my program director from wavering in his conviction that opting out was the moral course.

When I finally contacted my school’s Title IX office several months later, my caseworker first asked why I hadn’t filed the proper paperwork with the disability services office, then explained that there was no point in filing a complaint unless I wanted to re-enter a program that “didn’t want me in.” The only way to hold back the tears was to walk away without any explanation.

In fact, I had started the process of getting a disability certificate a year before, but when the head of the administrative office heard that I had been diagnosed with schizophrenia, he told me, “We don’t have any students at our school with such a serious diagnosis,” and that I should reconsider going on to graduate school. I ran away in tears, and never came back.

Discrimination in higher education is, of course, only the tip of the iceberg of the social and political response to schizophrenia in the United States. While attitudes toward diagnoses such as depression and anxiety disorders have improved substantially over the decades, stigma toward schizophrenia has clearly worsened, with growing beliefs about the “danger” and “unpredictability” of people so diagnosed. At the same time, support for forced treatment as a necessary (and perhaps unavoidable) institutional response has also grown. Indeed, policymaking in defense of coercion has become a rare point of bipartisan agreement, with heavily Democratic states such as California being some of the biggest supporters of the expansion of the psychiatric prison system.

SuProvision within the system

I am not without my own experiences of the worst of public mental health care – I have never received mental health intervention within a prison or jail, for example – but I have had my fair share of experiences of the more “everyday” disempowerment, objectification and dehumanization within “service” settings.

In fact, few experiences have been more damaging to my self-esteem than my several years immersed in Chicago’s public mental health system. As a service user with schizophrenia, I received treatment that is well documented in other people’s firsthand reports and testimonials. I was consistently treated as if every assertion I made was suspicious or delusional. Once, during a hospital stay, when I explained that I was a doctoral student, the head nurse responded, “And I’m the Queen of England.”

In some cases, medical personnel spoke to attendants as if I did not understand any English at all. For example, a former nurse at a county facility once told a friend, “I can’t say officially, but I’ve seen a lot of patients like that, she’s classic schizophrenic.” For many years after the program, I felt that all I had been and all I had hoped to be had been reduced to a subject to be treated with more antipsychotics, other types of antipsychotics, long-acting injectables, and the so-called drug of last resort, clozapine. Almost by definition, my most central experiences were classified as delusions, paranoia, and hallucinations that had little or no (almost no) meaning, and certainly no social value.

The “space joke” that started my success

I finally found myself going back to school in the most unexpected and unusual way.

After I was laid off, I considered applying to a number of academic programs, and when I approached my former professors to write me letters of recommendation, they almost always turned me down.

However, I had taken just one psychology class in graduate school while still a philosophy student, and my professor at the time told me that my talents were wasted in the humanities. In the summer of 2010, quite unexpectedly, I received an email from this professor explaining that one of their admitted students in a psychology PhD program had decided not to start the program, leaving them in a difficult position, and they wanted to know if I would like to take the spot.

It’s the kind of thing that almost never happens on PhD admissions exams, and my initial reaction was to think it was some kind of cosmic joke, but my therapist, one of the few people I worked with in the system who was serious about empowering clients, including me, said I should definitely do it.

And through an almost unprecedented stroke of good fortune, I ended up completing a PhD in Psychology. From that point on, my driving force has been the pursuit of research, technical assistance and policy interventions aimed at bridging the large gap in perspectives and priorities between the service users affected by policy and the managers, clinical leaders, researchers and policy makers in positions of power.

Although I had worked for many years in a variety of roles both within and outside of public mental health, produced over 100 academic publications, public guidance materials and reports, and secured major research grants, it still came as a surprise to me to achieve tenure after so many years of believing such an achievement was impossible.

Perhaps inevitably, my feelings were mixed: on the one hand, I felt a sense of relief and a sense of significantly greater freedom to speak out about the discrimination that I (and many others) experience.

But I also felt guilty, because my success contrasted sharply with hundreds of thousands of highly accomplished people with severe disabilities who have been completely shut out of academia for all the wrong reasons, and because whatever social status I now enjoy is not one that is available to people with schizophrenia as a group.

For most people diagnosed with schizophrenia, the more standard outcomes are institutionalization, incarceration, unemployment, and poverty. Why do these outcomes occur?

First, we continue to implement policies that, at best, help people survive but hardly enable them to thrive. Being forced to live on Supplemental Security Income set at 80% of the federal poverty limit is not thriving. Living in segregated nursing homes, single-dwelling units, or, for far too many people, on the streets is not thriving. And these policies persist in large part because the people who are directly affected continue to be excluded from leadership roles and meaningfully participating in key decision-making processes.

Lack of local support

Here in Allegheny County, we see only the most basic forms of inclusion and integration for those directly affected by schizophrenia and other serious mental illnesses. [SMI]Whether in the context of county and city policy, in civic life more broadly, or in the training and education of counselors, social workers, and other system providers in my community, the stories I hear from service recipients are often heartbreaking: stories of restraints, seclusion, and forced injections in local hospitals, of being discharged without being connected to appropriate services and supports, and of entrenched poverty.

The county’s response to SMI patients facing minor criminal charges, as documented in investigative journalism, should shock the conscience of everyone who lives and works here. So does Allegheny County’s report on outcomes for patients forcibly hospitalized here. These reports describe treatments and outcomes that we should collectively deem unconscience acceptable. The services we do provide too often trivialize complex, meaningful experiences into meaningless symptoms of disability or illness, alienating rather than engaging those who seek services in treatment and care. And they (we) generally don’t have a seat at the table.

Rather than celebrating my own isolated personal success, I want to conclude with a call to action for local government administration, housing, social care, and health system leaders, the universities and training programs involved in educating future providers, and inevitably, a call for inclusion. At some point, we all need to stop, take stock, and understand that the situation in our communities is unacceptable. The policies, practices, and outcomes described above are unacceptable. Our failure to visibly include and center those directly affected is unacceptable.

We all have a responsibility for the status quo and an ethical obligation to change it.

Nev Jones is a faculty member in the School of Social Work at the University of Pittsburgh and will become a tenured associate professor in fall 2024. Jones can be contacted at nevjones@pitt.edu.

Read more essays about the Pittsburgh experience:

Pittsburgh apologizes for the inconvenience

A family health scare and historical tragedy motivated me to defend Pittsburgh rather than leave it.

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

My American Dream ended on a deflated air mattress in a rundown apartment in Squirrel Hill.

As I sat in a bar in Colorado thinking about environmental disasters, my deep (and complicated) Pennsylvania roots came to the surface.