Why Lived Experience and Curiosity Deserve Your Respect:

Sometimes I think therapy practitioners and mental health administrators don’t really think about what they are doing when they adhere to industry standards in trying to promote mental health for those marginalized in the mental health system. Whether working in the mental health system, administering mental health programs, or working out of their own psychotherapy office, practitioners are presumed via education and experience to know how to help. Many of us learn how to tout what the research says about the problems we encounter.

There is a presumption in mental health that help must be scientifically proven to be valid. At least there should be journal articles and laboratory results that validate what you have to say as a therapist. Many of us have participants who will ask for what the research says. Many of us feel compelled to keep current and familiarize ourselves with the latest trends. When we are faced with things we don’t understand perhaps we read up on it and seek training.

Thank goodness we also are all trained to think that it is appropriate to be curious and let the participant teach us things when we encounter a cultural issue. However, not often enough is this applied when a practitioner works with people who have experienced psychiatric incarceration in jails and hospitals, deprivation on the streets and shelters, or marginalization in board and care group housing. Here, practitioners with master’s degrees who have not been incarcerated, abandoned and deprived themselves need to do a lot of cultural exploration. Too often, rushing to the books to understand psychiatric oppression is likely to provide one with dehumanizing medical model constructs and eugenic beliefs.

As a practitioner with a twenty-five-year career working with marginalized populations, I am writing to emphasize an emerging trend in counselling theory and practice. In this article, I will argue that counselling theory is increasingly headed in the problem-focused direction. Additionally, I will emphasize the importance of letting this trend be guided more by culture and lived experience and less on evidence-based research.

Basing A Mental Health System on Evidence-Based Practices:

 I was once warned in the county in which I work that I could not tell anyone that I don’t believe in evidence-based practice. Indeed, in Alameda County in California, mental health recovery was once thought to be achieved through a researched method that is imposed in a top-down manner by experts who have established fidelity measures. In other words, evidence-based practice has been researched elsewhere and found to best work in a prescribed manner that must be replicated. All workers learn a practice that is taught to administrators (who must replicate it in the prescribed manner) and then the learning trickles down to the mental health worker who is taught through workshops and on the job training.

Much of the reason I criticize the roll-out of the evidence-based practices in this manner is that I worked in a failed project as an administrator. The Choices project rolled out in exactly this manner. We had three evidence-based practices going at the same time and were supposed to work together seamlessly so we would learn all three practices to a certain extent. I like to think that it did not take a researcher to know that recovery did not trickle down in this manner. But the expensive program did have researchers who helped end our collective misery after six years.

These best practices were the employment-based best practice developed out of Hanover New Hampshire (IPS Model,) the corporate peer counselling model represented by Recovery Innovations out of Phoenix Arizona and the housing-first model out of Seattle Washington, that suggests that if you rescue people from homelessness, mental health problems tend to fix themselves. As a staff, we were told that the established fidelity measures were proven to work across cultures.

Having gone through what I went through on that job, I don’t understand how best practice notions are thought to be able to cross cultural barriers. My biggest take from the terrible associated experiences was that best practices, like movements or revolutions, need to arise out of unique cultures by people who are targeting those cultures.

Evidence-Based Counseling Theories That Cross Cultures:

Back in the olden days, evidence-based research was considered an imperative part of developing counselling theories. In my master’s studies, which ended twenty years ago, the theory seemed to be touted as being functional to cross-cultural divides much as evidence-based practice is today. I learned many good theories as such that were proven to work across cultures, from Freud to Albert Ellis to White and Epstein.

For example, when I was young, structural family therapy could help children of the slums: European, African American, African, Asian, Latino and Indigenous. Across the nation, and the western world, not only slum families but also families with psychosomatic conditions such as anorexia or childhood diabetes could benefit. Anorexia was more often found in the suburban private schools, than in urban areas so the practice was statistically proven to cross cultures.

As a young therapist, I had the occasion to use some of the techniques rest assured they would work across the cultural divides. Of course, back when I was in school and learning from books than with my young twenty-something look and undiagnosed Asperger’s, I wasn’t too good at holding onto clients. But I did apply many of those intense techniques for better or worse because they were battle tested.

But were those techniques truly able to cross all cultural divides? I only needed to consider my own experience with them to know. Those techniques had ripped into my family support and resulted in the emotional cutoff. For example, being bullied into eating by my father may have worked to reveal family dynamics, but it really traumatized me that exacerbated my condition.

My parents were private school teachers and were not used to hearing that they or their kin were remedial in any way. Suddenly, it seemed like in their cultural tradition, it was more customary to throw the misfit off the lifeboat. My family had a member who has given a lobotomy a generation ago and who then disappeared into institutions. Suddenly I might be the next victim?

Perhaps, the structure that was unwittingly imposed on our Quaker boat was viewed as militaristic. The Argentinian, Minuchin, had worked with the Israeli Army. Maybe, in fact, it was a bad cultural fit. While the therapist didn’t initially let my parents throw me off the boat, I failed to gain weight and those ever-mysterious results from the psychological evaluations came back.

In fact, I have been to many therapists of very different orientations both before and after this experience and slowly I learned more about myself during the psychological evaluation of my soul. For example, I eventually learned that I had at least two distinct neurodevelopmental disorders that helped to explain my torment. I did not respond well to other schools of thought that just were pathologizing and added to the negative thinking in my head.

How Evidence-Based Counseling Theories Helped Me:

Twelve years later, I engaged in a rebellious political battle in a drug zone as a social worker. I found myself a ward of the state, confined for three months to a state hospital. I could only reflect on the way I had a series of powerful therapists use their culture to impose reality on me. I’d had to undergo quite a journey to realize that a history of having reality imposed on me resulted in degradation and a loss of sense of self. When, I was moved from the observation ward to the chronic unit, for example, I was essentially being trained for a life of degradation and abuse. I was forced to learn subservient behaviour to get off the unit, behaviour that makes it hard to be around the privileged culture of therapists.

I feel that imposing a behavioural change that isn’t wanted or isn’t possible for the subject results in subjugation and resentment.

Of course, there are many therapeutic traditions that function contrary to the view I assert above. In Uncommon Therapy, when Jay Healy explores the work of Milt Erickson, an alternate view is clearly explored. In such a model an exceedingly powerful therapist has figured everything out and knows how to trick the participant into behavioural change. Several theories work to impose a behavioural change in like manners.

Just because I have experienced a sense of feeling culturally dominated by powerful theories, doesn’t mean that other people may not benefit from them. And, so, particularly with culturally diverse people, I identify my own experience and how many therapies did not work for me. And then with a sense of curiosity and inquiry, I explore what the client’s experience has been and their view of their needs. I am not averse to an occasional paradoxical technique.

The Development of Problem-Focused Treatments:

 Since therapists have a shared history of studying western therapy movements, I think that therapy movements (or theories) are also important to explore culturally. In fact, as I have practised crossing cultural divides among marginalized individuals, I have often found that I must reflect on social circumstances about what made the therapeutic movements work to make what I know useful!

Ten years later when I dove back into the study of theory to pass my licensing requirements, I recall arguing to one of the few licensing teachers I trusted that I felt it was good that therapy theory was moving in the direction of what I called problem-focused treatments.

By then, I stopped treating counselling theory as a proven fact. I considered: firstly, who the theorist was culturally, and who their subjects were; and secondly, who I was, and who my client was cultural. Before I applied the techniques, I was thinking about how to transmit them. I figured some would fit in some contexts, but not in others. I put people first. I had learned that working eclectically with theories that matched the situation led to more success.

At the time I was leading DBT groups for individuals who suffered from complex trauma. There was a specialized treatment for addictions: AA and motivational interviewing. And there were also emerging treatments for trauma, like EMDR, Internal Family Systems, Emotional Freedom Techniques. I studied WRAP to help consumers across diagnostic divides work together to avoid public warehousing and watched it become an evidence-based practice. I figured there was a similar need to teach other therapists how to work with things like psychosis.

By then, I started to see many DSM diagnoses more as oppressed cultures that required specialized theoretical focus. I felt that different problems could be deconstructed and redefined in solvable components. This would help therapists and clients alike work together to better understand what was going on.

So, in my mind, problem-focused therapy is the new direction in which psychotherapy needs to head. The trick is to turn problems (or social phenomenon’s) into cultures, reconstruct those cultures into solvable definitions and bring people together across DSM cultural divides to work on them. Ten years ago, I could see this was being done for many problems already, just not for psychosis.

Respecting Lived Experience and Culture:

 Back when I was award in a state hospital, I was diagnosed with “schizophrenia” and given a poor prognosis. As a young social worker who had worked with “schizophrenic” clients for seven years, I could not accept the diagnosis. Misguided individuals tried to impose that diagnosis on me, but what I was going through had nothing to do with the “schizophrenia” I had observed and studied up to that point. It clearly had nothing to do with what they thought “schizophrenia” was either.

I experienced so little empathy and such hard conditions, I did not realize that anybody else could possibly have endured what I believe happened to me. I did not imagine at that time that many people across diagnostic categories really could relate to what I was going through. I never knew that one day I would see how it all went together.

For the last ten years, I have held specialized group therapy for psychosis and I have redefined what psychosis is through sharing my story and hearing the stories of others from my culture. This work has not been based on clinical trials, but a rather anthropological observation. I may be able to research journal articles and run experiments that prove what I am saying. Maybe one day I will. But what has helped me most throughout this time was my lived experience with myself and my ability to cross cultural barriers.

Many major figures in mental health have admitted that they used lived experience to develop their work. Consider evidence-based movement leaders such as Bill W., Bob Smith, Albert Ellis, Marsha Linehan, Mary Ellen Copeland, Bessel van der Kolk, Francine Shapiro, Marius Romme and Sandra Escher! I bet that others who have contributed significantly to the development of best practices have started with their own lived experience.

As a person who spends all my work day at practice, it feels odd that my work is often discounted. I did run a successful research grant to prove the validity of my approach but many of the marginalized participants I worked with were unwilling to fill out surveys. Perhaps it is a lot to ask marginalized people to partake in an experiment. I would have objected to it when I was not well.

I believe that my lived experience and curiosity has created something of value. I think these elements are more important in the development of counselling theory that the research which somehow doesn’t trickle down to serve marginalized people. I think it is time counselling theory and therapy practitioners who work with marginalized people to look to them for help in what they are doing. Really, this is already happening for many of us who effectively work with the disenfranchised. It’s just slow to see institutional change.