The following is a speech I gave at the Ontario Shores Academic Research Day in Whitby, Ontario this past Friday. It includes an adaptation from my last blog, so I apologize for the repetition. 🙂
I am delighted to have been asked to speak today to a crowd of mental health champions and enthusiasts. This is something that I used to have the privilege of doing somewhat often, but of late, I have been trying my hand on the ground a little more. And, I have found, that doing something about the problems and inequities you see in the world, is admittedly a lot harder than talking about them.
See, I started out in this first voice speaker’s role feeling grateful to be able to tell my story. It was essentially a mix of a desire to educate, and to receive some validation for what encounters with the mental health system can be like. But you and I both know that we’ve heard this type of story before. We all know how it ends. I stand here and tell you how I got better and then we all feel validated. Now this isn’t a bad thing. I just think that I have more to offer than that. I think that probably every mental health consumer to ever speak on this stage and stages across the country – has more to offer than that. And yet this is the capacity in which I am here – the token first voice speaker, here to support the evidence that the system works. Now, I am beginning to feel uncomfortable with this role – and with the hierarchical systems of knowledge through which we determine what is helpful. One of the mental health topics I never see discussed, but which I have wanted to address for a long time, is power.
I have begun to notice among my mental health consumer friends, that there is either a palpable frustration with the power imbalances between them and the clinicians that serve them; or perhaps worse – they are unaware, and they have incorporated this low status, take what they can get, do whatever their doctor wants kind of submission, to the detriment of their own self-determination. Everybody knows that a compliant patient is everybody’s favourite. I was one for a long time. I’m still reasonable and pleasant, by the way, but not compliant.
This very state of compliance left me vulnerable to accept whatever authority figures told me about my experiences. But they were MY experiences – not there’s. Why was the goal to have me comply with their idea of what I was going through? How does that set the stage for me to be able to feel empowered in my own recovery? Through playing this role of teacher’s pet, I didn’t learn to envision my own future. I learned to be a sheep, to be afraid of risk, and to deny my own frustrations with my situation. I’ve thought a lot about this. And I’ve studied how mental illness has been presented in academia, in research. Most people wouldn’t notice the rampant assumptions made about what mental illness is like, what is means, and what kind of life a person affected by it can hope to live. And these assumptions aren’t made by us, the consumers. They are usually made by those who have power.
And research is changing. It is moving forward. Consumers are being consulted these days. But we are rarely the ones coming up with the research questions. I would love to see a research paper on power roles in psychiatry and how they impact recovery from mental disorder. Don’t get me wrong – I don’t see any fundamental problem with established helping, perse, but one problem I do see with the present wave of psychiatry, is that the gaze is rarely turned in on itself. Maybe it’s not about what techniques we use. Maybe it’s about what assumptions we carry with us, when we enter into that treatment room. Maybe it’s about assuming that the person in front of us is complex and capable, and even more radical, perhaps – our equal.
I always remember the way a psychiatric nurse of mine in hospital treated me as if there was nothing inherently wrong with me, as if I was her equal. She even introduced different ways of looking at the type of experience I was living – ones that suited me, and that she definitely didn’t get out of any psychiatric nursing textbook. I thought, at that time, that she was naïve, and just really nice – that she didn’t know what a messed up person I was, because everyone else seemed to think I was pretty messed up, and everything I read led me to the conclusion that I had lost all power and control – that I was now a second class citizen, a crazy person with a degenerative brain disorder.
Since then, I have learned to hold psychiatry with a grain of salt – I question the gods of research and the assumptions upon which their conclusions rest. This I do because some of the things I have learned about myself through this medical lens, are demoralizing. This, on top of everything else, is why I will always have a difficult time fitting in inside these institutions where I have chosen to serve – probably because I question some of these elephants in the room – like power.
So at a research day like this one, I’m not sure which role to play. I am more than a success story, I am more than a survivor, a consumer, I am more than a researcher, than a therapist, than a program coordinator, than an artist. You are all more than clinicians, and researchers, more than spokespeople for the pharmaceutical industry, or for the psychiatric industry. Of course you are. But we all live and work inside particular roles within this infrastructure – where everybody knows the rules of the hierarchy, and very few people question them. And many, many people who live and work in this world of mental health care, are frustrated. This is usually blamed on a lack of funding, but I don’t think this is the only cause of frustration. I think that the power differential between clinician and client is stressful for everyone. It makes helping relationships into something else – into sources of stress and attempts at control and coercion. But what if we really acknowledged the inherent imbalance of power in these relationships? It is at least a good start to be aware of them, and to know that empowerment is what allows people to move forward. So, if we as clinicians hold the power, we must be willing to share it, to let it go, in order to really help the people we are attempting to help.
Now, what do I know? I am just a newbie: a beginning therapist, a first time program coordinator, an advocate, and a person who creates written and performance work about my experiences as a psychiatric survivor. I have been labeled with pretty much every category of mental health diagnosis in the DSM, and I have come to recover from my experiences by claiming none of them. Although I still participate in my own treatment, I choose to interpret my experiences with far more nuance and sophistication than could be achieved by trying to squeeze myself into the narrow boxes provided by the DSM. If people could actually breathe inside these boxes, if they weren’t inherent obstacles to recovery, you’d see more people wearing them with pride. But we don’t, do we? We see some people who will talk publicly through the lens of the labels they have been given, but that is perhaps because they would not be invited to the table to speak at all, if they did not speak the language of psychiatry, if they did not knowingly or unknowingly relinquish parts of their own experience in the service of legitimizing the paradigms of this industry with their consumer presence. Although I may depart from and even question some of these norms and unspoken rules of first voice speeches, I hope that I can be somewhat helpful, and if nothing else, at least start a conversation.
I am here today to talk about a few things: firstly, what components constitute and promote recovery from mental disorder, from my humble experiences and point of view. I have chosen to speak to this, using a framework provided from a mentor and friend of mine: neuroscientist, psychiatric nurse specialist, award-winning researcher and author, David Whitehorn. In David’s book, Navigating Mental Disorder and Recovery, he lists qualities that are in my mind essential in promoting recovery. The second part of my speech will describe my perspective on some deeper philosophic origins of mental health stigma, and how we might begin to approach this daunting issue.
The first quality David lists in the final chapter of Navigating Mental Disorder and Recovery, is agency. Now, agency, or the capacity to effect change in one’s own life, is something most of us would agree is an important thing, and if we imagine having agency stripped away – if we aren’t able to determine the course of our own lives, well, we can see how we might lose hope of being able to make a difference in the greater world, or for example, in our own recovery process, and the two are of course interrelated. Such is the conundrum of treating persons with severe symptoms of mental disorder.
In many instances, people will be forced into not leaving the hospital, into taking a medication not of their choosing, into not being able to see certain people, or to function in many of the capacities they might like to. How in these circumstances, can we promote agency – since many of us would agree that it is important in maintaining self-worth, and a self-determined vision of our future?
Some people end up rejecting psychiatry altogether, not because it is entirely unhelpful to them, but because those working in it often ignore some of the fundamental principles which might change someone’s view of their stay in a psychiatric institution from one of unjust imprisonment perhaps, to that of a difficult but transformative part of their recovery journey. One of these fundamental principles, is agency. To promote it, we as clinicians have to respect the choices of the people we serve. We have to give them the information necessary to make informed choices, so that there is always some degree of personal input in their own treatment plans.
I was in a day treatment program at a hospital in Montreal once, and I will never forget the psychiatrist who trusted me enough to let me make collaborative decisions with him about what medications I should take. He also had enough respect for me, to let me choose to perform in a play in the evenings, while I was being treated. I remember this whole experience as positive, not because I got some miracle drug, or because someone departed some profound information about self-care that I had never heard before – my situation improved and I came away with a positive view of my treatment, because I was treated with my personal agency in mind. When my clinicians assumed that not only could I recover, but that there was nothing scary or problematic or inherently bad about the state I was in when I arrived there – that it was simply one point along my human journey – I was able to relax. I felt there was nothing to rebel against, nothing to deny, because there was nothing wrong with my experience of mental disorder, in the first place.
Another quality David lists in his book, is hope. And of course, we all want this. We all are working together to promote this. But some of the problems we encounter when trying to instill hope come from promoting goals that are measured by very specific results.
For example, at one point, I had the hope that my negative symptoms and cognitive deficits would go away by the end of that year, and that by then I would be able to think and feel and write the same way that I had before I experienced psychosis. Of course, that was almost 9 years ago, and I still don’t write and think and feel the way I used to. But at that time, I was dangerously close to taking my own life because my hope was so specific, and unrealistically fixed, and was so dependent upon these conditions. And life is never predictable enough that it will always meet the conditions we invent for it to live up to. I survived, not necessarily because I experienced a decrease in symptoms, but because I opened up the space in front of me, because I adopted a more flexible vision of what recovery might look like.
How was I able to adapt, to become more flexible? Partly it was through meditation and mindfulness training, and partly, it was with the guidance of people who related to me unconditionally – as if I were exactly where I needed to be, no matter what specific goals I was able to achieve. And most of these people who treated me unconditionally were not clinicians. Most of them were peers – people who had had to adapt to make it through themselves – to re-envision and re-contextualize their mental illness narratives, to ones of uniqueness, and learning, and even opportunity. Some of the people who carried the most hope, were those who were able to accept their experience, and to reclaim it and define it on their own terms. Most of these people still took meds, and were still “compliant” patients, but they had confidence that came from having opened up their perspective, they could hold multiple narratives about what their experience meant to them. They were able to live with agency, and the lucky ones saw clinicians who made room for these complex and individual narratives, and were not threatened by them.
In the first chapter of David’s book I mentioned previously, he distills definitions of recovery as it is defined in mental health research, across the last several decades.
David is quick to point out that there are no right or wrong definitions of recovery, but that there is some variation in their implications.
The first definition of recovery he mentions is symptom remission. Of course, there are many people who never experience full remission from symptoms, but who go on to lead full and meaningful lives. And, if for the purposes of research, we define recovery as symptom remission, we leave out the nuances of what recovery can mean, and we risk spreading the toxic idea to our clients that without a remission of symptoms, recovery is unattainable. We open up a can of worms by encouraging clients to conflate the absence of symptoms with the ability to move forward in life.
I know that I once felt that I could not move forward UNTIL my symptoms were better. Well, if we as service users are not engaged until symptoms improve, good luck motivating us to try functioning at the levels at which we may be capable along the way.
The logical next step in our history of defining recovery from mental disorder is functional recovery. Although this may be an improvement on the previous model, we can run into problems with defining what is determined to be a healthy level of functioning. And if we make it more specific to each person, it still becomes difficult to determine what social, academic, and occupational roles might be “normal” for specific individuals.
I know that once I finished school last year, I wasn’t working at first. Does that mean I was experiencing a dip in my recovery? Most of the people in the generations under 35 have difficulty finding work that is meaningful and suited to their levels of education. Does that mean that there is something wrong with their mental health? Maybe not. And maybe, we live in a world with too much stigma to accommodate many of us who carry psychiatric histories. I myself encounter stigma at work, even though I now have the requisite education to be there. It is fine to work in peer support if you have some of the heavier DSM diagnoses attached to your name. People even point to you as an example of how far one can come. And as an artist, I am also permitted a space, because artists are often seen as interpreters of reality, and rarely as those who reflect it with metaphorical or literal accuracy.
But in my work that uses my Master’s level education, there are some around me who are uncomfortable with the way I straddle multiple roles and identities within the mental health system. A year ago, before graduating, I was treated with a good deal of respect, and I actually rarely encountered stigma in my work life. But, at that time, I had yet to move up, albeit incrementally, in the hierarchy of mental health care. As a consumer-advocate, artist, peer support worker – I was fine. No one had to take me seriously in those roles, if they didn’t want to. Now, I am on equal footing with some individuals who may have difficulty with any adjustments in the power differentials between clinician and client. My very presence challenges that. So, my work life can sometimes be lonely, and sometimes demoralizing. If I experience that, even going in with my head down, trying not to make trouble, even with my ok level of adaptability, I would not hesitate to assume that others do as well. Luckily, a student I am working with at Dalhousie University, is planning to conduct research on how to make room for peer support workers, like herself, who go back to school and get clinical training. How does one remain professional, and on point, without completely abandoning the benefits of the mutuality and equality fostered in peer support? I hope she gets funded in her research, because I think it’s important. If anyone here takes an interest in working with this brilliant young woman, I have her info.
So, after having highlighted some pitfalls of symptom reduction and functional recovery models, David introduces the idea of recovery as a process. One exciting aspect of this model, is that it is self-determined. It acknowledges the benefits of the prior models, only using them to define recovery in the ways clients wish them to. And it doesn’t focus so heavily on an endpoint for recovery; this is more realistic, as nothing about life, including mental health, is static.
I know that personally, letting go of the idea of an endpoint, was extremely helpful to me in being able to actively engage with my life, no matter what kind of day or week or year I was having.
David’s fourth model, though, is for me the most important. It is called Recovery as Life, and it challenges the idea that experiencing mental disorder means that something is fundamentally wrong with a person or has gone wrong, in their life. It takes a broader view, is aware of the socially and culturally constructed views of what is normal, and of the bias our society has toward how tragic mental disorder is. It of course can seem pretty bad. It can seem tragic. But we have some power and influence as clinicians to direct the narratives clients adopt about their experiences. Maybe parts of these situations are really difficult. But do they improve by highlighting how tragic and horrible they are? Of course, it is important to empathize with the feelings of the client, but if we further solidify the notion that their experience is really bad, that something is really wrong with them – how likely are they to be hopeful about their own recovery process?
If we tell them that they have to get better, that better is normal and normal is it, then how likely are they to accept what they have been through, to accept their present state of mental health, and be able to work from there?
When I was ill 9 years ago, when I was the most impaired, I felt so bad and broken and like everything was wrong with me and the trajectory of my life. This was not supposed to happen. So, when I came across points of view which were deterministic and fatalistic, when I heard that this was really bad, my hallucinations got way more scary, and my anxiety went through the roof. My suicidal ideation reached dangerous proportions. As much as validation is useful, I think it is important to measure this with an unconditional view that the person in front of us is not broken, that those who suffer may require help and to learn to adapt, but that our lives are no less meaningful, our voices are no less important or valid than those who do not experience these levels of suffering in this particular way.
Society determines what is acceptable. We as clinicians have to believe that the people in front of us are fundamentally whole. They may present as distressed or confused, but if we can’t see their fundamental okness and humanity, how can they? I’m not talking about lip service or superficial bedside manner. I’m talking about changing the point of view we have about people who suffer. This is how we change stigma. Several research studies show that service providers are more responsible for stigma against people with mental disorder than any other group. This has to change.
Now, here is where my talk gets a little heady. What follows is a brief but in depth look at some possible roots of stigma, and how we might all benefit from working with these, in whatever way makes sense for us. So this next section of my talk, was spawned by this paragraph I read in a book by Louis Sass:
“Implicit in a great deal of biological psychiatry is an asymmetry of explanatory principles. Normal (or healthy) forms of consciousness are assumed to be, to a great extent, under one’s intentional control and, in addition, to operate according to rational principles and to be oriented toward the objective world. While these normal mental processes are certainly assumed to be correlated with physical events occurring in the brain, seldom are they viewed as being mere causal by-products of such events, since the meaningfulness and directedness they exhibit seem intrinsic to the psyche, to the realm of meaning rather than of physical event. But abnormal modes of consciousness, at least those characterizing the insane, have often been seen very differently: as involving a ‘fall into determinism’, a lapse from dualism whereby the malfunctioning physical processes (in brain and nervous system) disrupt the mental or psychic stream, depriving it of its intrinsic rationality and meaningfulness.”
– Louis Sass
So, here are some thoughts, after contemplating the previous paragraph:
Why is my experience of love or my choices in music seen to be mine – belonging under the blanket of individual personhood, when if I hear a voice others do not hear, or feel emotions more or less intense than the majority of people in the room – am I suddenly deemed to be at the mercy of my “broken brain?” Sass’s question is a compelling one. On the one hand, there are pitfalls to thinking that my suffering or my difference is simply who I am, that this experience is in fact “me.” These pitfalls are often highlighted in anti-stigma campaigns, wherein a person is encouraged to separate themselves from the source of their suffering, to say “I am not ‘my illness.’” But I myself see holes in the notion that we are a divided self.
For one, it features a great deal of western philosophic and pedagogical bias. This form of dualism may stem from dominant historical assumptions about the role of the rational mind to overcome emotional turmoil. We divide the person into two parts in this case – believe it or not, Freud still carries an influence, because we still promote a variant of the idea that if we are “healthy”, we are then able to dominate our emotions with our capacity to self-regulate.
In this more current bio-medical “anti-stigma” model, we rely on biology, and say that we are not our brains gone haywire, that we are something more. Sounds ok. But wait, if we are not our brains when they don’t do what we want, then our brains musn’t be involved when we do things like ace an exam, or learn a new skill? Even mirror neurons in empathy research are all the rage. So, are we what we think only sometimes, when it looks good to us based on the opinions of others and doesn’t elicit oppressive or stigmatizing responses from the masses? Is this rational/brain piece exactly who WE are when it is convenient and when it provides congruency with society (at times, not necessarily a healthy society) and when it falls out of congruence, it is somehow NOT US?
Maybe minds are simply involved in the operation of our brains, but aren’t our brains themselves. Maybe we are holistic complex beings with minds and aliveness who interface with the world, and brains that reflect and respond to our environments and our minds and our aliveness and just about everything else we can imagine.
It is important to mention that although I am challenging them, many forms of dualism are part of how humans often come to experience the world. We see things in categories. We see brain, not brain. Mike. Not Mike. It is easier. But it is through my study and practice of Buddhist meditation that I have been empowered to question the prevailing dominant views of good and evil, bad and good, sick and healthy. Inside this eastern context, and in others, lies the realization that all human beings have delusions – some are more common, and some are not. One principle delusion that many societies suffer from collectively is this delusion of separateness, or of dualism itself – that there is a self and an other, that we are finite beings with firm boundaries between us. But when we think about it, we might realize that we are pretty interdependent. I depend upon other people to make my clothes, to build this conference room, on you all to listen and hopefully receive the meaning and intention of the words I am speaking. And this environment and all of these relationships change me. I change and adapt at such a rate at which I am at no point the same person than I was at any other point in my life. Thank heavens for that! But, usually we don’t think about this angle, do we? We believe that we are independent, static and alone.
No wonder psychosis then, is so threatening to the dominant western establishment; when one’s boundaries with the outside world begin to dissolve, when one become acutely aware of oneness, or impermanence, of the absence of a self, when one is “inconsistent” and not following the social mores or cues of the pack, then the rules of western dualism are broken. And what better way to respond to people who challenge our fundamental beliefs than to cast them out, call them mad, crazy, deviant, dangerous, defective, essentially affirming our sense of dualism, because we are afraid that nothing we have thus deemed bad can be at all a part of “us.” We cling to these notions of self and other, of mentally ill and healthy, to affirm our own identities, because we carry the belief that identity is a real thing, that we are separate, self-made, biologically determined and fixed. This is all an attempt at trying to convince ourselves that suffering is more predictable than perhaps it is, and even, that we can control it so that it does not happen to us.
So our notion of good and bad, of dualism, IS the inherent problem with regard to stigma – not who fits arbitrarily into the good and bad (sick and healthy) camps as being defined in one way or another as we define them in different ways across time. Foucault describes that the concept of mental illness wasn’t really a part of how we interpreted psychological suffering in the west before colonialism and proto-capitalism. He points out that madness was first recorded as such with the funneling of poor people into work houses. Under capitalism, if one could not work in a highly structured, demanding environment, one was categorized as mad or later mentally ill.
Before that, psychological suffering certainly existed, but it makes me wonder about how I would have been treated had I lived in a time before such pivotal points in Western history. Might I have been cared for and included? Might my suffering have been validated or normalized? Might I have even been given special roles to help contribute? Certainly, there are still parts of the world in which recovery rates from mental illness are higher – notably the developing world. And they don’t often have access to our psychiatric drugs. But some of these places – not all, some – have seemingly superior frameworks for integrating people who suffer psychologically. Is there a connection between reducing stigma and recovery from mental illness? I would bet that there is.
I know that in most of our anti-stigma campaigns, the focus is on encouraging people to seek professional help. Well, where I come from, good luck in getting it – especially if you’re broke and you want something other than pills. I honestly feel uncomfortable telling people in my home city to reach out to the public mental health system, because the possibility of getting the help you need (if they call you back) is according to the CMHA, 20%. I don’t know if stigma and lack of respect for persons with mental illness relates at all to so little money being spent on mental health care, and to the quality of the care that is delivered, but regardless, we are where we are. I think we need to broaden our scope of who we envision as helpers – to deinstitutionalize the notion of caring for each other – to empower ourselves to care in the way humans intuitively know how, which we can do far more effectively, IF we don’t see each other as different or separate.
As those who have experienced mental disorder, and particularly those whose experiences threatens long held definitions of reality like psychosis, we need to shake off this blanket of shame that surrounds these unique sources of knowledge, and realize that there is in fact a place for us –as those who may be inconsistent, and selfless and confused. And we need not be divided into ANY categories, because WE are constantly changing and therefore – do not exist as the fixed entities we sometimes think we are. For some non-Buddhists, (and even among Buddhists themselves) this might be threatening, and we may seem some distance away from transforming society through community-based initiatives and other examples in the spirit of interdependence. We do live in a world currently bent toward polemic thinking, resulting in isolation and social fragmentation. But the sooner we take the risk to work with our own minds, to ask hard questions, to pull apart the foundations upon which all of our stigma and assumptions rest, the sooner we will come to a place where someone with exceptional life experiences who reminds us of unity and impermanence – will manifest as the ironic beacons that they are. It starts with our own minds; by loosening the shackles of who we think we are, of who we think others are, we might make some room for these age-old wounds to breathe, and embark upon a process that can finally begin to resemble healing. Night folks 🙂
Seeing myself grow into the limits of my own form is a process that photographs can document. It is my hope that if I make it to 80, I will laugh tenderly at the notion that the body that had served me so 
well and for so long had once been perceived as a prison. It is my aspiration that the person behind my eyes will be so free and authentic that she will be the very picture of inscrutability. After I am gone, all that will be left of her face and body will be photographs. And I hope that her enigmatic gaze will make people wonder – about the mysteries, the wild depths, that lingered for a life time beneath the mischievous glimmer of her eyes.
In Sanity 