Perhaps one of the greatest ways to oppress a people is to convince them that they don’t exist. In America, this is what many people who have experienced psychosis face in standard treatment. In the absence of a sense of a supportive and functioning community, many who have experienced psychosis don’t feel we belong to a rich, interesting, and meaningful culture. The bulk of treatment, money and current policy is focused on incarceration, forced medication and facilitating marginalization into socially controlled environments. All this for the sake of suppressing rather than accepting associated experiences. I am writing to contend that ultimately suppression alone is a treatment concept that just doesn’t work! And so in America’s history, those who have experienced psychosis join many marginalized groups who are cast as a threat to the status quo.
Perhaps those educated in an Abnormal Psychology class don’t realize that dividing psychosis up into a variety of medical illnesses translates into denying sufferers a voice in clinical settings. In twenty years work as a provider in mental health I have seen providers, even highly trained ones, believe that letting a person talk about delusions or hallucinations will only reinforce them. Even the best practice CBT for psychosis does not encourage the clinician to explore the meaning. Thus, groups are often run according to the norms of the provider culture, and those who experience psychosis are expected suppress their experiences, even when in crisis.
Divided We Fall:
Sadly, when psychosis is not treated like a culture, many end up with few options. Treatment successes may sashay around with the Normals bearing painful and unspoken secrets; the privileged may end up insulated and hermetic in a back room; the abandoned, enduring impoverished circumstances on the street; and the majority, going from the hospital to oppressive institutional circumstances, with stints on the street or in jail. Those of us lucky enough to work through it, may experience degrees of tormented injustice on the job. All the while the concept of a sub-culture has been denied by the construction of tall differentiated towers of illness that often grow taller and more isolated in the current system of care. Most provider-folks would not want to be faced with the limited life they envision for their clients.
The concept of illness is so embedded in our system of care that we don’t often consider that we are treating peoples as though they are not just irreparably sick or ill, but uniquely so. We don’t think that when we go to work we are systematically attacking a history, and imposing eugenic concepts. And people in America are so quick to attach eugenics with people who enter psychosis, that many of us deemed ill learn to believe that we deserve no companionship.
As a person who has walked on both corridors of the clinic, there is little doubt in my mind that this is the way trauma and noncompliance is addressed in this country. “You don’t mess with the Medical Model!” I have heard declared by many a people who work alongside me in the field of mental health. Most of us who have culturally offended the doctor in social services and need our paycheck oblige. Once cornered by a supervising psychiatrist and told that people who had been in institutions should wear a brand so employers would know never to hire them, I chose to keep my job and speak in defiant code that he would not care to decipher. This is a small example of many that reflects the nature of American clinical stink.
I’d argue that most “mental illness” constructs get to the point where they develop strategies that involve empowerment through forming sub groups that work together. Addictions treatment have a twelve step support network; bipolar support groups exist funded through the DBSA; eating disorder treatment persists; people appreciate a therapist who specializes in grief, sexual trauma, chronic pain; OCD; such groups are often built into a private practice. Veterans build support group networks; adult children of alcoholics do as well; even those with chronic personality disorders have started to work together, led in groups by Marsha Linehan. More and more, people with lived experience are starting to defy the life sentence of misery with subcultural movements.
My Early Expereience:
Linehan was not yet popularized when I had my second run in with the mental health system, plodding in out of the ghetto, still anorectic scrawny, onto a voluntary ward in black converses, two toned fluorescent green shorts, and black Marlboro shirt with slicked back hair, creating Marxist interpretations of the Rorschach on command with a habitual, yo , remark. I came out of that private hospital with a heavy psychotropic regimen, a permanent Schizotypal brand and went back at it working my way through school now sedated and addicted to diet soda. Maybe it was just that I didn’t quite fit the mold of that anorectic subgroup that drained my parents’ bank account after all. It had been a sub group that had helped to some extent. I learned how to kiss. At least as a male anorexic, I had a voice and decent living conditions.
In reflection, it was definitely my race, gender, and class privilege that helped me belong to a career in which I could impose a professional facade on the vulnerable and play a demeaning well. All I really had to do was change up my clothes and continue my work ethic. That was kind of hypocritical for a Marxian, but I was working my way through a Master’s program and too busy to reflect on whom I was or what I was becoming. I put my blinders on and did do exactly what my psycho-dynamic therapist said. It was credentials and constant streams of neuro-cocktails that kept me at bay.
Back in the days I was trained to use the word SCUTS (short for Schizophrenia, Chronic Undifferentiated Type—provider-cool lingo,) I had no idea what it was like to suddenly and permanently become a eugenic failure and to have the experts who write the books fully dehumanize you. When it happened to me, seven years into my career, the treatment of the experts like my psycho-dynamic therapist kept on making things worse until I was confined to an old back ward in which the temperature was kept below freezing and in which there was ice on the inside of my window. At least as a skinny man with a personality disorder, I may have got to study a work book with two therapists dinging on a bell.
My Institutional Mentality:
It’s true, on that sub-freezing back ward, I wanted to have nothing to do with this sub-culture I was locked in with. That roommate who was rumored to have killed someone (all lifers carried this reputation); I didn’t think I could learn anything from that loud snoring fool! I was in a different kind of a learning experience.
Indeed a year and a half later when I was in a two hour commute to work at an Italian Deli, still floridly psychotic, believing that the Italian Mob was taunting me and breaking into my apartment. Yes this sounds delusional and foolish—unless you yourself came home from your twelve hour day to find your apartment ransacked! Yes, Floridly “psychotic” on my bicycle, I’d come across a clearly “psychotic” man biking the opposite direction, towards the local Target, talking back at his voices and I wanted nothing to do with that fool. I didn’t even consider him a potential roommate so that I could have afforded more food.But now, fourteen years later, I do. And the mental health establishment continues to attack efforts to build a culture, like the Hearing Voices Network.
My Recovery Mentality:
Now in the process of trying to market a memoir, I have obtained a practitioner license. I also now have eight years of experience post-license running groups for individuals who have experienced psychosis across diagnostic divides. I have developed a curriculum to help me prepare for (and justify) these groups.
What I have found is that authentic experiences listening to another persons’ experience of psychosis does more to jolt a body into seeing themselves clearer and develop more flexibility in the way they make meaning of their experience. Participants on the outpatient unit I work on, many of who are living out institutionalized conditions that are worse than I went through, are my guides.
I have also just completed a grant that sought to reach in to institutionalized circumstances and start up groups in agencies that can segue people towards Hearing Voices Network support groups. We tended to find that an in-between program was successful in the location in which we worked. Indeed, local economies, cultural histories, and immediate political circumstances need to be taken into consideration, I believe, not ignored.
My work is about teaching people how to effectively go down the rabbit hole with someone who is floridly “psychotic.” It offers a road map along with rationales for why paying more attention to messages and bringing it into the room can actually work. It helps shine a light on things that get carried out that are heroic, that usually would pass by unnoticed in a system of treatment suppression.
I believe we message receivers need to build a sub-culture and home base to support us. However, in many ways a contrarian, I would also suggest that depending on the locale, asking individuals to come to voluntary groups may result in a cultural class-skimming process with people who have been cultured in accordance with the streets or embedded in board and care homes, feeling excluded.
Once supported, individuals with message experience can successfully infiltrate Normal circles and build social rehab successes and then disclose their experiences with psychosis to help the culture out. Over time, I have come to be rather opinionated about ways that us Mad peoples need to learn to work together and be inclusive, not fight against each other like the proverbial crabs in a pot of boiling water. So often and in so many ways sub-cultures in America are infiltrated and turned against each other to help them stay submissive. Indeed this is what a medicalized system does by calling our special skills and journeys an illness.
It is very understandable that a movement with individuals who are wounded come out believing that their route to recovery is the only route. Socially rehabbed individuals may clang around each other trying to promote their work and recovery without observing that they are using their privileges with egos rather than the spirit of collaboration.
Suddenly, recovery starts to feel like a Caucizoidal (or white, of European descent) phenomena. I’ve heard many say this about the recovery movement. Or it could definitely feel male dominated; influenced by heterosexism, class biased, or non-inclusive of those with immigrant status, veteran status, homelessness, substance abuse history and criminal stigma or gang affiliations. In Oakland, basing a movement on research constructed in a European socialized country, may not fit.
Failure to include those who didn’t hear voices or close mindedness to those of us who still take medication are still other ways message receivers may end up fighting each other, in an effort to rush to the top rather than work with each other to get more people into social rehab. These are my views as I still fight feelings of exclusion by gangs of folks within the movement.
Reclaiming Our Roles:
In short, Stigma of all sorts needs to be addressed seamlessly in a multi-cultural healing culture of “psychosis” that that is excluded from the mainstream. If we as a culture continue the process of exclusion, perhaps we haven’t learned our lessons from being excluded. Yes I may be accused of being idealistic here, but so many people who have suffered tyranny on top of tyrannies in their psychosis process have had to face all these issues and some in order to recover.
I believe that those of us who have are in a unique position to be inclusive especially if we help each other with this. May we use our experience to include others, even perpetrators, in a healing process so they too can heal without perpetuating more pain! May we reclaim our role as healers using our experience with trauma in our lives to address trauma that society often denies is real!
In our distant history, message receivers have played important roles in society. It is arguable that before the foundations of the modern world, we were spiritual healers in our community. Many of us face great genocidal dilemmas internally and have faced enormous apocalyptic tragedies, evil, and spiritual guidance. In this era of environmental petulance, spiritual warfare, heightening class divide, and massive denial about who really rules the government, isn’t it time to create a sub culture that can stand on its own two feet and get past the medicalized oppression that has it marginalized and going from the streets to the institutions for so many years?