video_ocean_sea_of_madness_speedpaint_by_nitelyhallow-d4lrqneAs a mental health advocate, I feel that it is important to debunk some myths about notions of recovery, and about what someone who is “recovered” should look like. It is essential that I not only speak from the point of view of role model, or of one who has crossed the imaginary finish line into recovery and won the trophy of normalcy and a return to anonymity, but as one who is vulnerable, is messy, is human – someone who is on a nonlinear and meaningful path, regardless of the dubious and oscillating territory where my mind might find itself.

I am someone who has fought harder than I think I realize to reclaim what I deem to be the privilege of normalcy. My past struggles are often invisible. My scars are hidden. My psychiatric status and my medical chart are known to relatively few people I encounter. However, I do sometimes choose to reveal my psychiatric survivor war wounds – for myriad reasons and situations I might encounter in my life. Sometimes it is because I know someone will judge me, and I just want to get rejection over with and use it as method of curating my friend and acquaintance circles. Sometimes, it is to foster intimacy and understanding. Sometimes it is educational. Sometimes it is therapeutic. Sometimes it is political. Sometimes it is because I am tired of pretending that I am someone that I am not; and it is for the sake of fostering a personal sense of authenticity.

Regardless of the reason (and there are often more than one reason on the list overlapping at once) I often feel like I tend to disclose my psychiatric survivor status when I am feeling particularly strong. This is of course quite natural. When I feel like I can handle rejection or confusion or whatever ramifications are likely to emerge – that is when I will smile from a place of poise, and speak my truth.

However, it has become increasingly clear that it is perhaps more important, and definitely more radical – to speak my vulnerability in the moment of feeling it, because that is the only way I can surpass concepts and buzz words and actually trust the world to receive my heart, and to hold it – raw and honest, and bloody and real. Practicing sharing vulnerability when I am strong is a useful thing to do, but I have now begun to see it a practice for my greatest lesson: how to share where I am when I am most frightened, most disoriented, when I feel least “together.”

Today, I have not yet left my bed. It is past noon. Due to burning the candle at both ends, due to ignoring my own sensitive constitution and stubbornly pretending that I have the privileges of the average person, I am now at a place where I am confronting an unraveling of my own mind. I have known these places before: the interrupted sleep, the fleeting auditory sounds that emerge and unsettle me, the mild paranoia – often very related to my early history of judgment and social exclusion, the inability to concentrate, the dissociation, the out of body feelings, and most of all, the fragmenting of the person at the core of me – the person who is steering the ship.

I find in this state, I often feel unsettled and uncharacteristically impulsive and frightened. I usually feel a little panicked, because I have worked hard to build up the idea of who “Laura” is, and because I know that in an instant – one moment of acting “weird” or unusual, and I can put strain on friendships, work relationships, and impair trust in the people I care about. This worry itself comes from the notion that the world I live in is a conditional place – contingent on me passing for “sane.” And I just realized, that most of the time I have such good responses to my disclosures of my psychiatric history and identity, because I don’t appear to represent them – I appear to be, what some people would call “recovered.”

And it is moments like these where I am glad I am still vulnerable. I am grateful that I can put my world to the test – to see if my friends and family and colleagues, most of whom I would deem very progressive individuals – are ready to practice overcoming stigma, discrimination, oppression, and all of the tiny micro-aggressions that people like me have encountered for centuries. Yes, I am vulnerable. Yes, I am in flux. I may appear different in character because of the way my stress response manifests itself. But I am a flexible, malleable and sensitive human being who is strong not in spite of these blips in my ability to “pass” as sane, but because of them – because I can unravel and still trust that the world I have built around me can hold me.

In this moment, I am filled with so much gratitude for my community, for the people who trust in mine and others’ inherent worth and potential. Amidst psychological chaos, there are always those who can see through to the eye of the storm.  So thank you. Accepting the fluidity of the human experience is a radical act – one that will carry us into a new age of compassion, collaboration, and broad-minded, clear vision. It is not in celebrating the “success” or “recovery” stories that are a measure of how far we have come. It is in being able to see those of us who flounder, to look deep inside and know that we are still there. We mad folk are in the midst of a process of psychic excavation, and it is dark and dangerous work. But we could not do it without someone at the top, holding a flashlight and a rope ladder – someone who knows that where we are going is important for all of us – someone who can see us and trust that we will return, even when we are invisible, even when we are echoes in the darkness.

http://theofferingbowl.com/index.php/petitioners/359-laura-burke-2014

The above link is to help me travel to Warrior’s Assembly this summer!

Hi, all!  I am hoping to fund some of the costs of travelling to France this July for the only place in the world where Warrior’s Assembly (the next step on my Shambhala path) is being held this summer.  Of course, this costs above and beyond what a part time student union employee makes, and after some contemplation, I decided to put this out there: if anyone would like to donate as little as $10, I could send a cd of my spoken word to them, anywhere in the world!  If you are able to donate any amount, of course I would be sincerely grateful.  To donate, just click on the orange link above to get to my Offering Bowl account.  However, if you are not able to donate, I just wanted to send out a thanks to those who follow my random thoughts on mental health, social justice, and the intersections between them.  Have a beautiful night!  Warmly, Laura

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.  :)

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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  :)

Heartbreaking.jpg~c200One of the most important examinations of oppressive double standards historically embedded in the medical model of psychiatry I’ve read all day  ;) :

“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

Above is the quote I have been contemplating for the last hour. To elaborate, I have been reading Madness and Modernism by Louis A. Sass. Here are some tangents which have emerged from an evening of reading and thinking:

Why is my experience of love or creativity or my choices in music seen to be mine – belonging under the blanket of individual personhood, when if I experience a projected image on the wall that others don’t see, or hear a voice others do not hear, or feel emotions more or less intense than the majority of people in the room – I am suddenly deemed to be at the mercy of my “broken brain?” Sass’s question written above is a compelling one. On the other hand, there are obvious pitfalls to thinking that my suffering or my difference is simply who I am, and that this variation in experience is in fact “me,” or at least these pitfalls are oft reported in many ineffective anti-stigma campaigns, wherein one is encouraged to separate oneself from the source of suffering or stigma, to say “I am not ‘my illness.’” But if one addresses this question with the level of careful analysis it deserves (or at least what is required to move forward and to come to any reasonable conclusions), one might find – as I am finding, that there are a lot of holes in the particular notion that we are in any way, a divided self.

For one, it features a great deal of western philosophic and pedagogical bias. The idea that this form of dualism is helpful likely stems from dominant historical assumptions in the western world, about the role of the rational mind to overcome emotional or irrational turmoil. We divide the person into two parts in this case – if we are “healthy”, we are assumed to be able to dominate the id with our ever-powerful egos.

So then, the divide between brain and self is not unlike this ongoing anxious battle to coax a part of our ‘irrational” selves into submission; only in this new, flashy, “anti-stigma” model, we attempt to say that we are somehow something more than our brains. More than our broken egos (or biological regulatory mechanisms – however you want to look at it). But what then, are we? 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? You can perhaps see why these anti-stigma campaigns aren’t so effective; they are based on some inherent flaws of simplistic dualistic thinking.

So what about alternatives? How about, I don’t know, acknowledging that 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. How about acknowledging that these forms of duality are all western philosophic and religious inventions that in fact do not exist?

Yet, it is important to mention that many forms of dualism are part of how humans often come to experience the world. It is through my study and practice of Buddhist meditation that I have been empowered with some of the tools required to scrutinize the prevailing dominant views of good and evil, bad and good, sick and healthy. Inside this eastern context lies the realization that all human beings have delusions – that some are more in line with the masses, and some are not. One principle delusion that many societies suffer from is this delusion of separateness, or of dualism itself – that there is a self and an other, that we are not in fact interdependent and not constantly changing at such a rate at which we are at no point the same person than we are at any other point in our lives. No, this delusion is that we are discreet, finite beings with firm boundaries between us.

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 (when we are in fact clinging to them to affirm our identities, because we have an inflated and delusional sense that a static self and identity are real things) than to cast them out, call them mad, crazy, deviant, dangerous, defective, essentially affirming our sense of dualism even further, because we are afraid that nothing we have thus deemed bad can be at all a part of “us.”

So our notion of good and bad, of dualism, IS the inherent problem – not who fits arbitrarily into the good and bad camps as being defined in one way or another as they go in and out of fashion. It is only in realizing that we are not fundamentally separate from anyone else on this planet (an admittedly difficult thing to do) will we then have enough empathy to save us from an endless cycles of mutual oppression and harm, or not much better – a hyperactive game of feminist standpoint bingo, wherein some people just don’t have the right education card to avoid being relegated to the loser/oppressor/evil capitalist sympathizer category, and thus creating more politically correct divisions between in groups and out groups.

As those who have experienced madness, and particularly those who live with experiences that threaten long held “boundaries” of reality like psychosis, we need to shake off this blanket of shame that surrounds some of our most central sources of revolutionary knowledge, and realize that there is in fact a place for us – not as those relegated to the sick and defective category, but as those who remind the rest of the world through the evidence our experience has rendered – that we are in fact not divided into ANY categories inherently, because WE are constantly changing and therefore do not exist. For some non-Buddhists, (and even among Buddhists themselves) this might be threatening, and of course we may be some distance away from transforming society with the empathy and compassion inherent in this notion. 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 therein 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 begin a process that can finally begin to resemble healing. Night folks ☺

 

When I speak to conference rooms full of people on the topic of mental health, the most common themes to pass over my lips are: self-compassion, mindfulness, and the importance of cultivating courage, kindness, and an open mind.  The most prominent concept I speak to is change. What journalists seem to be driven to write after hearing me speak is another story, one wracked with sensationalism, voyeurism, and an incredibly narrow view.  I have yet to read an article about me that does not reference in the title the infamous buzz words attached to my name: my diagnoses. 

A number of years back, I was diagnosed with schizophrenia, the worst of all of my psychiatric name-tags I’ve acquired over the course of my 20s.  I work at a university, I hold a Masters degree, I am a therapist, an artist, I have won awards for mental health advocacy, and none of this is really a big deal – except if you remember that I apparently live with schizophrenia. 

I just preface my resume with the words “I have schizophrenia” and I dispel my reader’s hope that anything I say will be of relevance, or just as inaccurately – they may come to believe that I am some kind of hero.  Of course, neither of these extremes are true.  But people who survive a diagnosis of a major mental illness are often placed in the category of victim, or champion.  And in the mean time, all I am trying to do is to be a human being.

What would be more helpful is to accept people with all of their challenges and vulnerabilities, to not force them to put on some sort of mask in order to prove that they are over their bad days.  Bad days, bad months, bad years – so what?  What are we so afraid of?  I once had a relative say to me that I had reached my quota of bad days years ago.  It is precisely this kind of pressure to be perfect or to be “recovered” that leads people away from the self-compassionate, tolerant view that would allow them to be resilient, full human beings. I do have bad days, but they’re really not that as bad as they used to be.  In fact, everyone has bad days, but if you have a mental illness diagnosis, they are seen as somehow different – they are viewed through a pathological lens. And even though I do still have some bad days, I personally do not think too much about my diagnoses anymore on a regular basis.  However, I know that many people who meet me can’t seem to forget it.  I typically get one of two responses:

“Wow, isn’t she amazing; doing all that with schizophrenia!” or

“There’s no way that woman has schizophrenia.  She’s not representative.  What a fraud.”

As I am aware that both views are rooted in stigma, I try to ignore them.  But this same predicament affects my clients, and many of my friends.  It is certainly a reflection of a larger social injustice issue.  So I am speaking up. I try to be patient with people, but I am still waiting for the day when someone might meet me somewhere in between these extremes, somewhere in the middle, where I wouldn’t have to to play either a victim or a superhero.

From the origins of psychiatry to the present, there have been two distinct paths one could walk toward the understanding and the treatment of mental illness.  These paths are the neuro-biological path, and the environment path, or nature vs. nuture.  Although most scientists of any notoriety would purport that genes, neuro-biologcal structure and environment are all implicated in the development of what we call mental illness, only recently have these paths begun to converge when it comes to treating it.

An important lag in our public perception is found with the understanding of epi-genetics, or the notion that genes are turned on or off by environment (and are even impacted by the environments of our progenitors several generations back).  For some reason, epi-genetics has largely been left out of the public discourse on mental illness.  One possible reason for this is because this wide array of possible influences over our mental states may appear threatening.  Just when we thought we had it figured out, it appears a lot more complicated and at least partially out of our hands.  Thinking we can map the brain and therefore understand and prevent mental illness is perhaps not as direct a goal as we had once hoped.

And in the meantime, when it comes to treatment, we risk getting knocked over by the massive pendulum swinging between the worlds of psychotropic medication, and psychotherapeutic and psychosocial efforts.  At this point, most practitioners only practice delivering care from one end of this spectrum or the other.  Our opportunities to visit a practitioner trained in dispensing and monitoring medication AND administering psychotherapy are few and far between. We are indeed more likely to come across individuals with strong biases in either direction, thereby potentially leading people in need of complex care interventions, toward lopsided and incomplete recovery outcomes.  And as most schools of thought uphold the covert ideal that IT is the preeminent path toward mental wellness, even when we have care teams composed of professionals with varied training, they often fall short of being able to cooperate and collaborate to the best of their abilities.

Why in the midst of this massive mental health crisis are we still fighting over our own piece of the pie?  Well, for many of us, our livelihood depends on it.  We are set up to prove through evidenced-based studies that what we are doing is valuable, and essential.  And those of us whose practice is better suited to qualitative analysis, or who are not represented in the current discourse on recovery-oriented interventions –  well, I’m afraid that for now, we’re mostly out of luck.

Even with several studies on the remarkably small difference between antidepressants and placebo for moderate depression, not to mention the question of long-term impact and the possible contribution to chronicity of depressive states, we still dole out pills faster than we can read the literature on them.  But it’s not only pharmaceutical money that drives the system.  Several reputable meta-analyses reveal that only a small percentage of therapeutic impact of Cognitive Behavioural Therapy(CBT) and other psychotherapies (15% of the total impact) is due to specific technique, while readiness of a client for change, their other supports, empathy from and rapport with the therapist, account for the majority of therapeutic change.  Yet, CBT techniques are seen as the gold standard, and today’s therapists are counseled to uphold firm boundaries, focus principally on technique, and hope for the best, leaving their basic human impulse to connect at the door.

It is clear to me that when massive amounts of funding are involved, when you have professionals with varying expertise pitted against each other for research money, when the popular discourse on mental health is years behind the research, you have a recipe for a less than ideal situation.

What can we do?  Educate ourselves.  Dare to be critical of the care we receive and the rationale behind it.  Stand up to the system that tells us there are only one or two options for any mental health problem.  Treatment plans should be client-centered, involve a choice of interventions, and clients should be trusted to take a principal collaborative role with providers.  When there is a medication with fewer side effects you have researched and would like to try, advocate for yourself.  When you come across a therapist with poor bedside manner and you know that empathy and rapport create the foundations for a healing relationship, ask for someone else.  Trust yourself if you come across an alternative treatment that seems to work for you.  It’s time to remember who is serving whom, and take some of the power out of the hands of clinicians and researchers, and place it in the hands of service users and advocates.  It’s time to realize that although most clinicians have our best interests in mind, their systems of learning are as human and as fallible as the people who create them.  As long as mental health care is fighting for the same small scraps of government funding, we are bound to place jobs, survival, and ideology over individualized care.   In my opinion, although I hope for the best, I think we just might be decades (or a massive federal government shift) away from anything we might dare to call “best practice.”

It all started quite innocently.  My room mate came home from her work at a café and mentioned that well known Hollywood actress, Christina Ricci, had dropped into the shop – for a second time in the past couple of weeks.  This wasn’t so surprising to me, as I know that the actress is in the city shooting a film, and famous people shoot movies in Halifax quite often.  I also know many of my actor friends who auditioned to play supporting roles in the same film, and I would like to think that I am somehow above being star-struck.  After all, I don’t watch Hollywood movies so much anymore, nor do I usually follow Hollywood media culture, but I do know who Christina Ricci is, and she fascinates me.  Why?  A few reasons.  One: she’s my age.  Two: she possesses an intensity and a courage in the roles she plays that I admire, and three: we both struggled with anorexia at the same time – she in the public eye; myself, only in front of the relatively few people who cared that I existed in my insular, small town fishbowl.  I am morbidly fascinated by this poor young woman’s relationship with her weight.  Years ago, I looked to her as a role model – the subtly defiant Wednesday Adams who seemed far too sardonic and oblivious to things as insignificant as her appearance, to fall into the same traps as me. 

But after curiously looking at recent pictures of her online, what I found threw me for a loop.  As I found myself scanning these recent pictures of her modest frame, I stumbled upon a tweet from a teenaged girl: “I want to look like Christina Ricci, 95 pounds of pure muscle.”  In the same breath, I found an article extoling the discipline Ricci possesses in her exercise and diet routine, and a quote from the actress stating that no matter what she does, she will never look like the average person in a bikini.  Now, think about that.  Of course she won’t.  Everyone’s bodies are on a vast continuum, and she will probably not often in her life, fall into the average category.  But what did she really mean by this comment (if it is indeed her comment)?  Well, I have a hunch that my recovered anorexic brain knows exactly what she meant.  She meant that no matter how hard she tries, she will never look as good as everyone else in Hollywood, that she will never be “enough.”  It broke my heart to read these comments, and more importantly, it broke my confidence.  This is the sequence of events that followed:

I nervously went to the bathroom to weigh myself, sighed, and went to the mirror.  Sighed again.  I have gained weight in grad school – normally not such a big deal to me – but today, the gulf between me today and the slightly more fit me that started 3 years ago seemed enormous.  And 15 or so lbs is not an f-ing big deal.  But I suddenly wanted to look at pictures of when I was 95 lbs, or 85lbs, or 78lbs, my lowest as a teenager- to remind myself of how unhealthy I looked.  And I remembered that I don’t have them.  There is a reason for this.  The reason is not because I looked sick, or because the images contain some sort of anorexia-relapse trigger.  The reason is because they freak me out: I simply was not even present in these photos.  My eyes were vacant.  I had checked out.  In these photos, I was not really looking at the person behind the camera, but at the future reflection of how “not enough” the picture would prove me to be.  And many women can spot this look – the shot where you’re trying to capture the best angle, your good side, where you’re terrified of what the picture will reveal, and are using sexuality and coy bravado to mask the feeling that you are NOTHING without them. 

My first instinct was to look into the future to where I could lose some of this excess, grad school weight.  And then I paused.  I am now in a role of peer mental health coordinator – a position where I will be working closely with many young people whose very culture dictates that they give a shit about how much they weigh.  They are already in the thick of it.  If I lose weight in front of their eyes, particularly if I dip below what I have come to see as my own average, what message am I sending?  I am not meant to be 95 lbs.  Not at all.  And I do not have the excuse of having Hollywood producers breathing down my neck.  All of us are role models.  All of us are examples for each other.  Social learning allows for a spread of both revolutionary ideas, and of subtle, silent oppression.  Every woman who ever lost weight told me they did it the healthy way, that they did it for their health, and for themselves.  Bullshit.  We do it because “health” has become synonymous with an impossible standard of physical fitness, with the Victorian belief that self-control makes us somehow stronger and higher status human beings.  There are sooo many problems with this notion.  One: it is often centered around doing what is socially desirable, and with the homogenous, tall, thin, large-breasted, big-eyed, toned bodies looking back at us from the check-out counter, alongside the high calorie, high fat, guilt-inducing snack foods.  In this social system, we are set up for failure.  Well, I have literally just decided that I would rather fail.  I would much rather fail at being a thin person who naturally isn’t so much, than be one of those who convinces themselves that their countless hours at the gym makes them a better person, that it gives them more control.  Well, what are you controlling, I ask?  Or rather, who’s standard of beauty is controlling you?  Don’t get me wrong, as described above, I have by no means overcome the societal systems I live inside.  I am not trying to say that I am somehow stronger for being able to sometimes not give a shit.  Some days, I do care.  Some days, I feel like my hairy legs and my fleshy body make me an avid feminist, and sometimes, I wonder if people might like me more, if I might have more social and work success if I looked more like the ideal.  This is a question I want to raise to everyone out there: Roughly what is the percentage of self-care that you practice that actually involves self-compassion, and what is the percentage that seems more like a punishment in disguise.  I’m not knocking being healthy.  I’m not saying that in order to be role models, we all have to be perfect according to some other standard of being unaffected by culture or personal mental health issues. I’m just trying to lead myself and others to question the sneaky ulterior motive of the notion of watching your weight in the service of “your health”.

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