This article was first published on Mad in America on August 4, 2020, here.
A friend once described me as an “escapee,” someone who never became enmeshed in the mental health system, never became defined by it, despite being diagnosed and treated. A large part of my ability to escape can be ascribed to my privilege: it is easy for middle-class White males with private insurance to just walk away. In the language of literary criticism, I am more properly a liminal figure, someone who exists at the edges of the world in question, both somewhat inside and outside, never of. For a time, I did define myself in the language of a mental health diagnosis, but no longer. It was a passage in my life.
That is relevant self-disclosure. The purpose of this essay is to present a way of thinking about a culture, the mental health culture, the culture of “the mentally ill,” one that I came to work in due to my own lived experience. However, it is one that my liminality did not let me fully understand until I worked closely with those fully immersed in it.
A few terms should be defined, and in defining them, the culture can begin to be revealed, part of the story told. Mental health refers almost exclusively to mental health problems or their possibility. Rarely are “normal” people ever described as “the mentally healthy.” The mental health system indicates everything from highly paid and institutionally powerful psychiatrists and top-level administrators to volunteer members of self-help groups. Mental illness and the mentally ill are also popular terms that are used frequently within mental illness culture. They describe features considered totalizing by those within the culture and outside of it, features completely defining one’s being through the use of diagnostic labeling.
Consumer is a more recent term, adopted in the 1980s by mental health self-advocates and activists. It was meant to indicate that those within the system should be considered consumers of the services they receive, the same as any other person making a market-based choice. This term remains, but it has taken on a similar connotation as the mentally ill, and it is only partially true: few choices exist for those who receive services in the publicly-funded mental health system, and, unlike those making other consumer choices, “consumers” within the mental health system are constantly under the threat of involuntary commitment to a residential treatment facility. Consumer was never used, in my experience, to describe people who use private insurance to access mental health services, the people to whom it most logically applies.
The degree to which one becomes subject to the mental health system is determined by level of functioning, as indicated by the Global Assessment of Functioning (GAF) score, which along with diagnosis and one’s severity of illness as determined by a qualified mental health professional (QMHP), helps decide one’s place in the mental illness caste system. I use caste here instead of class, because, while one can change one’s position within the system, the initial placement there is thought to be due to factors inherent to the person, such as genetically predetermined mental illness, and because it is hierarchical and exclusionary.
The position of a diagnosis in the caste system is a result of how far the thoughts or behaviors associated with the diagnosis fall from “normal,” or behavior expected by mostly White, mostly middle-class, dominantly male QMHPs. Depression, even though it is connected with many deaths by suicide every year, is considered inherently less severe, unless one has recently attempted suicide. Bipolar disorder is considered more severe, as the behaviors of those so labeled are demonstrably different than “normal,” borderline personality disorder more severe still, and schizophrenia is considered the most severe of mental illnesses, with its associations with delusion, talking back to voices others do not hear, and paranoia.
Thus, people with schizophrenia diagnoses are placed lowest in the mental illness caste system, and people with depression or obsessive-compulsive disorder the highest; people with schizophrenia diagnoses are thought to be least likely to re-enter the dominant culture, and those with depression diagnoses often never leave it.
The mental health system workforce has its own class system, mostly separate from but interacting with the illness culture caste system. Those who work most closely and directly with the people who are lowest in illness caste are lowest in workforce class and sometimes ill themselves: attendant care workers, van drivers, peer support workers. Because the workforce class system values education, especially an education within the field, next in line are case managers (who have degrees which often need not be mental-health specific), licensed social workers, therapists and psychologists, and, at the top, psychiatrists and administrators.
James Banks would call this a microculture; common parlance would call it a subculture. However defined, mental illness culture comes to dominate the lives of those within it, “the mentally ill.” The totalizing nature of the system will be described below, but it has been noted by others, such as Will Hall, who likened it to colonialism, and Sera Davidow, who described it as a form of internalized oppression.
Aside from caste, mental illness culture promotes identification with a diagnosis. Receiving mental health services becomes a full-time occupation, especially for those deemed “severely and persistently mentally ill” (SPMI) and for those determined disabled by the Social Security Administration. In day-to-day life, consumers travel from individual therapy sessions to psychosocial rehabilitation groups to appointments with supported employment specialists to “med checks” with a psychiatrist. They often live within settings in which their friends and neighbors are all consumers, and their social contacts consist only of consumers and mental health workers.
NG is a case in point. I will use initials only, which have been changed in order to comply with federal privacy standards, even though doing so follows the norms of the case study, a form many within the mental health activist community might call oppressive.
I first encountered NG while training Certified Peer Specialists–mental health consumers trained to work with others within the system–for Wichita State University’s Community Engagement Institute, at that time known as the Center for Community Support and Research. NG had failed his initial certification exam, entitling him to tutoring sessions in order to improve his prospects on future attempts. When I was tutoring him, NG was both a consumer at the community mental health center (CMHC) in a small town in Kansas and also a part-time attendant care worker there.
NG was a large man but not physically imposing. He had a round face, and his rustic clothing suggested he came from farm stock. At the time, he was shaky and slow to respond. As we discussed his tutoring needs, NG revealed that he had received special education services while in high school and that he preferred learning orally. At lunch, I inquired about how he had come to live in that small town, and why he was interested in this work. (In peer support work, sharing stories is a foundational principle.)
NG had worked in manufacturing in another small town prior to his self-described “psychotic break.” He had been married, and his wife, as was unfortunately common in that town at the time, became involved in abusing and distributing methamphetamine. NG did not approve of this, and they broke up. The divorce was acrimonious, and his now ex-wife enlisted others in the drug scene to spread the rumor that there was a contract out on NG’s life.
NG was a simple man; nothing in his experience had prepared him for this situation. He became paranoid as the rumor spread, and one night he began hearing threatening voices. Terrified, he tried to get away from the voices, driving his pickup on the Interstate at over ninety miles an hour as he fled.
The arresting officer, hearing what sounded to him an implausible story, sent NG for a psychiatric evaluation. NG was charged with criminal reckless driving, but the paranoia at the heart of his flight resulted in a diagnosis of schizophrenia. He pled no contest to the charges and served out his sentence in the prison section of a residential psychiatric facility.
A largely unmentioned aspect of the public mental health system in Kansas is that certain communities, typically those with supported housing blocks or a large number of Section 8 apartments, become dumping grounds for people released from residential facilities and who have no other place to go or who are unwilling to return to their communities of origin. This is how NG ended up in a supported housing unit.
There, it became NG’s “main job,” according to his treating psychiatrist, he told me, to “stay on meds and stay out of the hospital.” For a time, NG’s days consisted of individual and group psychotherapy, psychosocial education classes on such things as cooking and anger management, and monthly medication appointments with his psychiatrist.
All of NG’s neighbors in the supported housing block were also mental health consumers, as were all of his friends. He saw them at home, at “group,” and while waiting for individual appointments. NG, like almost all of his consumer peers, was placed on Social Security Disability and received high doses of psychoactive medications, in his case intramuscular haloperidol, an outmoded antipsychotic preferred by his psychiatrist. The haloperidol had given NG tardive dyskinesia, a potentially irreversible Parkinsonian syndrome, explaining the shakiness I had observed.
Because NG identified with his diagnosis and was fully acculturated as a mentally ill person, he accepted the idea that he would always have to be medicated and that he was supposed to be compliant with his psychiatrist’s orders, no matter the side effects or the personal cost to him.
The mental health center at which NG found himself is thought of as progressive, and its staff strive to make its consumers as independent as possible. NG’s situation improved, and he was encouraged to work. Like most men raised in the Great Plains, he had been taught to place a high value on work, and so he readily agreed when his case manager suggested it.
His identity as a mentally ill person, however, would not let him see work outside of the mental health system as realistic; it was a system that he understood, felt safe within, and that had come to define his life. Even though part of his old identity, the desire to work, remained, this desire had become subsumed into, and limited by, his new identity.
NG’s first step was to become an attendant care worker, helping others like him with activities of daily living (ADLs), such as cooking, cleaning, and remembering to take medications. This job triggered part of his previous identity, and NG found himself frequently exceeding the weekly paid work limitations set by Social Security for disabled people, so his case manager encouraged him to work less. NG accepted this situation: his new identity would not allow him to consider himself capable of living outside of the system, and his supports, supplemental income, and housing were all tied to continued qualification for disability.
Due to NG’s kind and caring nature, his case manager then suggested that being a peer specialist would be the next, logical step. Doing so would place him higher in the mental health class system and would increase his pay, while still allowing for part-time work and continued qualification for disability. The training was rigorous, though, as the position is complex and requires solid reading and writing skills, as well as sophisticated interpersonal interactions.
NG struggled with the written material, and at the lunch break during our tutoring session, I sought to understand him better so that I could tailor the rest of the day accordingly. What I most wanted to understand was why–or whether–NG wanted to do this job. So I asked him “If not peer support, what would you want to do for work?” His answer surprised me. He said “I want to work with horses.” NG had worked at a stable at some point in his past but had been let go because of a misunderstanding with the stable’s owner. His temperament seemed very well suited to equestrian work, as did his gentle manner. In order to both model peer support and to find out more, I asked him what was preventing him from working with horses. Physical labor, especially work outside in the sun, it turned out, was now impossible for him because of medication side-effects.
The barriers to NG achieving what he really wanted in life, then, were twofold: first was his assimilation into the culture of the mentally ill. Within this identity, his main purpose was to remain compliant to those higher in the workforce class in order to stay out of residential treatment. His identity indicated that full time work was impossible for people like him under threat of losing access to health care, primary income, and housing. It told him that his social world should properly consist of others like himself, mental health consumers, and of mental health workers. If he moved outside of the system, NG would lose all of his supports: fiscal, psychological, relational. He would lose his new identity.
The other barrier NG faced was discrimination against people with psychiatric diagnoses. Recall that the caste system for the mentally ill is based on diagnosis and severity: a person with a depression diagnosis would be expected to return to work or to never leave it, to live a “normal” life as a member of the dominant culture. A person with schizophrenia, no matter how “high-functioning,” would not. For NG, with a schizophrenia diagnosis, employment as a part-time peer specialist would show him as rising as high in caste as he was expected to be able to rise, no matter how capable of full-time work he had proven himself.
Theorists such as Davidow, Hall, and Banks characterize mental illness culture in a way that might make it an example of the deficit paradigm. They contend that the behaviors and inner states that result in psychiatric diagnoses are the result of trauma and/or neurodiversity; the mental illness culture as outlined above would therefore be caused by systemic oppression that should be fought against as a matter of civil rights and within that same tradition.
This view can be traced to the consumer/survivor/ex-patient (c/s/x) movement that was inspired by liberation movements for women, Black, Latinx, and LGBT+ people over the past 60 years. (For a more complete view, see Judi Chamberlin’s book On Our Own). If these theorists are correct, the “recovery” model I taught for seven years is inappropriate, as there is nothing from which to recover, only differences to be accommodated and adaptations to be understood.
True to my liminal relationship with mental illness culture, I vacillate between views embracing neurodiversity and the recovery model. This ambivalence becomes acute when reflecting on the differences between NG’s experience and my own. Clearly, processes of acculturation into and identification with mental illness culture do happen, often as a result of the threats and expectations of the system. This was NG’s experience.
Discrimination against those with mental health diagnoses is also very real outside of the system, and, in my observation, as a result of mental illness caste inside of the system. If recovery is necessary, perhaps it is recovery from the ways in which mental illness culture leads one to abandon one’s hopes and aspirations of a better, more fulfilling life, a life that should properly be defined by the person, not by the mental health system or by the dominant culture.
Lael Ewy (he/him/his) is a teacher, peer supporter, and writer living in Wichita, Kansas with his brilliant wife and cheese-obsessed cat. His work has appeared in New Orleans Review and Denver Quarterly, among others. His chapbook, Of Grace’s Resounding Caws, was published last year by Knotted Road Press. When not reading and writing, he works on old Volvos, sometimes successfully.
