Sometimes history manifests an elegant logic: Just as the American government was making good its vow to close all mental hospitals, early eighties youth culture was generating a promising solution to the challenges of mental health treatment.
A combination of factors, including dramatic social spending cuts as well as the good intentions of human rights activists, had lead to the large scale closing of psychiatric facilities that had come to be seen as inhumane. Sadly, nothing adequate was created to replace these institutions, and many mental health consumers, including the young, were left homeless.
[Buy on Amazon] Maps to the other side, by Sascha DuBrul
Diagnosed with Bipolar I after his first psychotic break at the age of eighteen, Sascha Altman DuBrul has been hospitalized a total of five times. In the process of putting the fragments of his life back together DuBrul sought refuge among the punk squatters of the Lower East Side in New York. The bassist for iconic punk band Choking Victim, living in a community where madness wasn’t only normal but a source of pride, Sascha finally found the sense of belonging he’d always craved. But he still felt a profound sense of isolation he felt while struggling with his own psychological issues.
“I desperately feel the need to connect with other folks like myself,” he wrote in his 2002 essay “The Bipolar World,” so I can validate my experiences and not feel so damn alone in the world.”
Seek and ye shall find. His essay struck a chord with many readers, and DuBrul was soon flooded with mail. This is how he met Jacks McNamara; their quickly ensuing friendship was a fruitful one and not just in terms of the profound sense of affirmation each experienced. The two of them soon got to work creating The Icarus Project, which started out as an online forum in which people with mental illness could share their stories and experience the connectedness so vital to their healing. One thing lead to another, and DuBrul is using his experiences to create positive change within the mental health system.
According to DuBrul, a successful program of recovery from a psychotic episode includes the engagement of peer specialists. Simply put, this means allowing patients to connect with those who’ve experienced similar problems. Not only would peer specialists be involved in the healing process, they should be involved in the process of designing recovery programs.
We don’t really want people with psychiatric disorders having input into their own recovery programs, do we?
We’ve recently explored why bringing end-users into your design process is a good idea. But what happens when we extend this idea to psychiatric care? We don’t really want people with psychiatric disorders having input into their own recovery programs, do we? How could we trust them to make rational decisions about their own care? And how could we expect others with psychiatric disorders to help them?
As DuBrul puts it: “A key part of being a peer specialist is that you’re identifying as someone who’s mentally ill, a member of a socially devalued group–stigmatized, dehumanized, objectified.”
Partly due to the prevalence of prejudice against people suffering from mental illness, the use of peer specialists has been a hard sell, but in recent years evidence is mounting in favour of peer support. DuBrul credits his own recovery with having had the opportunity to share and seek solutions with someone who’d undergone similar struggles.
Partly due to the prevalence of prejudice against the mentally ill, the use of peer specialists is still a hard sell.
“I think the roots of my affinity for this work,” says DuBrul, “come from having been witnessed by another person who understood me. It’s not just me–a lot of people in our society are incredibly alienated and lonely. The experience of somebody else being able to see you and get you–that’s a deep, deep feeling.”
DuBrul sees himself as part of a larger movement rooted in the social justice struggles of the ’60s and ’70s and is connected to a global network of activists and artists determined to change the language and culture of mental health. He cites dozens of other peer-developed projects that have laid the groundwork for the work he’s doing now.
Since last summer DuBrul has been helping to further develop the role of the peer specialist, or “wounded healer,” within the New York State Psychiatric Institute’s facility near the Hudson River in the Washington Heights neighborhood of New York City. His job is to work with trained psychiatric clinicians to help design, implement, and teach a new model of care for young people who’ve just experienced their first psychotic episodes.
DuBrul isn’t out to unilaterally replace the conventional medical model (as challenging as his interactions with the system have been, he recognizes the important benefits of clinical care), but he is seeking to provide an effective complement to standard psychiatric treatment.
The traditional model the clinician-patient relationship is hierarchical, which poses problems.
Why is such a complement necessary? For starters, in the traditional model the clinician-patient relationship is hierarchical, which poses problems.
“Clinicians focus on assessment and diagnosis,” DuBrul explains, “and there’s no expectation of reciprocity. Peer specialists are guided by the principle of mutuality. The peer specialist is really in a place of co-learning. It’s a different framework. Few people expect a clinician to share personal experiences, but sharing personal experiences is actually a critical piece of the peer specialist’s role.”
So what do clinicians and peer specialists have in common that helps them work together to design treatment programs? According to DuBrul, both exhibit, in the words of humanist psychologist Carl Rogers, an “unconditional positive regard” for clients: That is, they do their utmost to express warmth and acceptance no matter what the client does or says–a treatment model often held responsible for major leaps forward in client-centered therapy.
As for working with clinicians, DuBrul endorses the “polyphony” model of family therapy, exercising mutual respect despite differences of opinion.
“Different ideas can complement each other,” he says. “Also, you have to have trust between clinicians and peer specialists, so part of the program needs to include the building of trust.”
The psychiatric community tends to lean toward purely scientific (e.g. “chemical imbalance”) explanations for psychological impairments, and so its solutions are designed as scientific responses (e.g. psychotropic drugs). Treatments informed by this way of thinking often ignore the deep human need for reciprocity.
The way of thinking that advocates peer-to-peer assistance is very much of the postmodern–and, yes, punk–view that questions the right of authorities to assume total control of our lives.
The way of thinking that advocates peer-to-peer assistance is very much of the postmodern–and, yes, punk–view that questions the right of authorities to assume total control of our lives. The new way of thinking postulates that you’re the best judge of what’s good for you, and the second best judge is someone who’s walked a mile in your shoes.
A part of the problem is the framing of alternate mental states as purely negative anomalies to be “normalized” at all costs. But it may be better to think of such states as opportunities for growth and insight: “You can see a breakdown becoming a breakthrough,” DuBrul points out.
The program he’s now co-designing is intended to aid young people who’ve been diagnosed with first episode psychosis. He and his colleagues are setting up a network of teams throughout the country to help psychiatric patients devise life plans to implement after their release.
The program DuBrul is now co-designing is intended to aid young people who’ve been diagnosed with first episode psychosis.
“Ideally what we’re doing is getting them while they’re young,” says DuBrul, “and treating them in a way that they learn from their experiences, coming out the other side how to live. The current medical model tries to contain the illness, but what would it look like if we could see the illness as an opportunity, as a kind of dangerous gift?”
Punk thinking, par excellence, and DuBrul, who still identifies with the punk community wherein he came of age, waves the flag high.
“It’s incredibly punk,” he says, “to talk openly about being crazy.”