Mad Pride Toronto 2012

You’ll have noticed, if you follow Sä-gə – I’m grateful if you do, but hard-pressed to believe that anyone would – that I’ve been cheating a bit for the last few days.  Whilst I promised, at the beginning of July, to post daily, I didn’t write anything on the thirteenth and fourteenth.  Despite this, posts time-stamped “July 13” and “July 14” exist!  I haven’t established the existence of CTCs – I’ve simply edited “Publish immediately”.  I thought I’d mention this, as it appears that some individuals aren’t aware of this very useful function.  You too can go back in time by visiting yourblog/wp-admin/post-new.php, finding the “Publish” box on the right, and clicking “Edit” just adjacent to “Publish immediately”.

My trickery being confessed, I’d like to discuss some things that occurred earlier this week.  I had the good fortune of finding out about something called Mad Pride Toronto via Facebook just one day after the event series began.  In its own words, Mad Pride Toronto is “an arts, culture, and heritage festival created by psychiatric survivors, consumers, mad people, folks the world has labelled ‘mentally ill’, and those in solidarity with [them].”  The goal of these five days is to, essentially, promote the development of mad communities and aid people in combating discrimination.  I felt, too, that Mad Pride was an invaluable way to gain rather heart-wrenching insight into how the mental healthcare system [pun entirely intended] malfunctions, how prevalent and problematic psychiatrization of the masses truly is, what overly zealous “pilling” can result in, and how this all ties into the healing-curing, compassion-ration debates that seem to arise in every aspect of medicine.  Indeed, as a person just entering the medical field, and as a student researcher immersed in the day-to-day lives of advocates of big pharma, I don’t typically see the care system built around mental health through anything less than rosily tinted glasses.  I don’t mean to say that I am oblivious – I was well aware of some of the problems being faced by those subjected to the output of what is partially my own industry.  However, as a person not particularly well-versed in empathy and one incredibly fascinated by physiological effects, I’ve always relatively enthusiastically advocated the use of even highly experimental drug protocols.  Despite my being hesitant to participate in research initiatives that utilize animal testing, I’ve, in consistently proclaiming that medication, medication, and solely medication is the solution to most problems of mental health (and, more judgmentally, that anyone who says otherwise might wish to consider visiting an institution), been guilty of propagating what I feel to be a similarly despicable form of experimentation.  After this week’s events, while many of my views remain identical, I better understand, from both an academic and a personal perspective, the consequences of my actions; stigmas that I did not know I had have been lifted from me.  It’s difficult for me to convey precisely how much of a wake-up call Mad Pride provided.  In brief: my study subjects, once distant cases dissected and filed away again post-morning-coffee, have become my very real, very badly treated friends.  I remain intrigued by pharmaceuticals; I still brandish my scalpel eagerly, jokingly threatening to vivisect people I don’t get along with.  But now, nearly anything goes for the advancement of science.  That “nearly” wasn’t there before, because I previously didn’t understand the fact that “compassion vs. ration” shouldn’t be a valid fragment.  Overwhelmingly, it is rational to be compassionate.

I would go on, but I feel that I would slip even further from bearably articulate writing.  To summarize, then: the issues discussed this July are those that anyone braving the long and winding pre-med path should make himself or herself aware of, and fast.

Regrettably, I managed to attend only two of the week’s many events – Thursday’s discussion of mad social work, and the book talks occurring on Friday night.  I’ll speak to Thursday’s, predominantly, but address the learning that I extracted from each.  Required remarks: Please note that, in examining these events, I will be using the term “mad” in the same way that it was employed during the discussions.  All names are altered for the sake of others’ privacy.  Please excuse any errors in my transcribed dialogue – I didn’t get the chance to write it down on site, so it is written solely as recalled, which may well make it out-of-order and quite partial.  What I consider to be the central points of both our discussions and my realizations are given in bold face.  Although this is a little unusual to make note of in a disclaimer, I don’t agree with some of these, but felt them integral to portraying the essence of the discussions taking place.

That said, Part Two of the Mad Think Tank Series was titled Mad Social Work?, and was hosted in Ryerson University’s Kerr Hall East in affiliation with the Ryerson Madvocates.  I entered Rm. 216 to find individuals of all ages seated on chairs that had been arranged in a circle; approximately fifty of us were present, to the organizers’ delight (presumably, they had expected about ten to fifteen people).  Those leading the discussion mentioned that the atmosphere would be very “Come as you are, do as you do” – people were permitted to speak whenever and however they wanted as long as they remained respectful of others in the room.  We were going to be talking about a range of topics concerning mental health.  Indeed, we covered psychology, nursing, different ways to think about madness, accountability in research, the current barriers to better healthcare systems, the need for more financial support and housing, psychiatrization of society, and discrimination in advertising, to name a few.  Discussion began with several predetermined questions, the first of which was the below.

“Why are you here?”

“Too many losses and deaths” said a man who identified himself as having DID.  “Especially in the Aboriginal community.  No one hears about it, but it’s just too much,” he continued, raising another area of concern – racism in the system – that would be discussed in Friday morning’s meeting.

“I’m here because I’ve been impacted by my medication, and labelled by my helpers,” another said shakily.  Others still were starting to do peer support, and were interested in pioneering the creation of groups geared at fighting for awareness of the intersection between physical and mental disability.  A survivor diagnosed with schizophrenia – also, incidentally, a former emerg. nurse – was here to describe her experience with the split between living experience and academic discussion of mental health.  Many were looking to connect with the mad community.  A CAMH medical professional – a psychiatrist, from what I recall – wanted to explore better ways of getting funding, advocating, and maintaining research accountability.  Some were just here to find out what mad social work really is.

Quickly, participants pursed interesting side notes.

“Has anyone seen the CAMH ads?”

This was the first question casually posed, and it was greeted with a unified, indignant “Yes!”  Presumably, CAMH had released a set of advertisements that, posted all over Toronto, prompted further discrimination against the mad community.  This introduced a theme that surfaced again and again in discussion: that of “helpers” actually hurting – of psychiatry, medicine, social work, and their practitioners diagnosing easily, labelling avidly, and refusing to listen.

“It’s the psychiatrization of the wider society!” a man sitting next to me exclaimed.  “What’s been done to people in this room is probably being done to everyone.

“It’s true,” a soft-spoken, blue-hatted man on my right laughingly muttered.  “My name is Wesley, but I’ve been called other things.”

This resonated profoundly with me.  As someone who has, throughout my life, been regarded as more than a little odd, I felt that I could at least partially empathize with what it feels like to be labelled – or, less gently, to be slapped with stigma.

“Sometimes, you want to read them a paragraph, but they only have five minutes,” another grunted, speaking to the fact that few professionals can provide what their patients feel is ample time to explore and encourage true health.  He described his experience with clinical depression – with exploring medicinal remedies for seventeen suicide-attempt-ridden years: his psychiatrist’s administering medications that eventually resulted in his becoming critically obese.  “He told me I would die in six months if I didn’t lose it all,” he said.  To aid him in preventing this weight gain, his family doctor recommended an altered diet; with the diet, he was surprised to find that he lost not solely weight, but also his depression.  It turned out that he had, for the entirety of his life, made dreadful errors in his eating habits; they had resulted in his recurring attempts to end his life.  But no one had taken the time to explore nutrition as a potential cause.  “The depression is gone, but I don’t miss it,” he finished gruffly. “It’s been seventeen years now, so I haven’t died six months later.”

“See, that’s why I believe that peer support is the number-one way that people can receive help,” interjected Wesley; the room resounded with agreement.  “I’m a recovering addict and I identify as mad, but I don’t like to consume anymore: I like to give.”  At this point, there was tremendous applause, to which Wesley chuckled a “Thank you!”  He continued: “I try to be a really great worker, but I didn’t go to school.  So it’s very difficult to find work.”

I considered these points, and the people before me.  Mental health professionals cannot be blamed for having limited quantities of time to distribute to their patients, but why has there not been a more publicly emphasized focus on peer support – the kind of work that Wesley was describing?  I’ve spent my life professing the need for medical professionals to be adequately trained prior to being allowed to practise, certainly, but if people so well-meaning and relevantly experienced are willing to commit their time, why may they not be employed in peer support capacities, granted positions that do not necessarily require a firm grasp of how to administer psychological cures?

“I’d really like it if someone went for a walk with me every morning,” a thin lady in the back hesitantly admitted.  You don’t need a degree to do that, right?

I would understand the need to prevent the untrained from functioning in psychiatry – mistakes could be life-threatening – but to inhibit the unaccredited from being there for people living with what they had previously faced?  That’s difficult to justify.  Anyone who has previously had a serious problem will be aware that the kind of work Wesley does saves lives consistently.  It is a tremendously important component of the healing process that is so highly regarded in modern medicine – that is being supported by medical professionals worldwide, being supplemented by the MCAT’s shift towards the behavioural and social sciences.  Work like Wesley’s, because of its relevance to health and safety, deserves the financial rewards and social status granted to other real jobs.

“I can sympathize, Wesley,” another woman noted.  “I do far more in my personal life in terms of social work than I do in my professional life.”

“See, but there’s even an economic argument for social work!” a student a few years my senior – a health policy major – added.  “I don’t know too much about social work, but I know that people helping each other promotes health, but also really saves money.”

“Yeah, but put ‘peer’ in your name and your income drops by half,” someone said sadly.

“There’s another side to this!”

The psychiatrist from the not-so-positively reviewed CAMH had spoken.

“I work at CAMH—” she began.

“But you’re not a shrink!” a man blurted out, cackling.

“I have several degrees,” the psychiatrist said slightly coldly.

“Oh,” ashamedly, turning away.  “I’m sorry, really.  Got a little ahead of myself.  Not right of me,” he mumbled.

The psychiatrist continued, not before giving him a small smile.  “Sometimes, I choose to avoid disclosing my credentialized education,” she said insistently.  “I find that it can prevent me from providing the help that I want to offer.”  A few heads turned in her direction.

I see her point now more than ever.  On Friday, post-book-discussions, it was not uncommon to hear such things as “Stop all the medications and all the psychiatrists!  Pursue something that works” and “We eat it like dessert, the thought that doctors, medicine, and pharma are well-intentioned.  They’re not!  They are not our friends”being cried out.  I’d considered psychiatry earlier in life, and am sympathetic to the discipline’s intentions despite vivid tales of corruption.  I still believe in medicine.  I don’t and most probably won’t ever wear “Occupy psychiatry!” tees.  Good psychiatry, medicine – and, I think, pharma – must be at the core of the care system.  The issue is not in the drugs and the research, but in the careless use of the drugs and the research.

“There are some good psychiatrists,” Wesley conceded helpfully.

In the spirit of returning the room to the programme, the organizers posed a second question.

“What is mad social work, or less specifically, mad helping?” they asked.

The question seemed so broad.

“Let’s define mad!” someone cried out.  The crowd laughed.

“I have ADHD and anxiety, am I mad?”an art therapist sitting across from me asked uncertainly.  “Do you want to be?” one of the organizers laughed.

“Let’s put it this way,” someone said more seriously.  “‘Mad’ is anyone that’s willing to bring forth personal humanity and compassion for the purpose of making someone else feel more normative.  Anyone that’s willing to help.”

“Well, okay, what is helping?” one of the organizers questioned further.

“I think we need to redefine help,” a woman said.  “It’s whatever  you need to be well.”

“So I can be my own helper,” someone clarified.

“Well, I think that’s the idea missing in mental healthcare,” a woman in a brown cardigan contributed, and explained that psychiatrists are typically placed on pedestals that prevent patients from feeling comfortable enough to truly interact with them.  “Yeah, definitely.  Healing can’t properly occur without equal standings, without removing the power dynamics,” a man in the very back of the room exclaimed eagerly.

“This injures the workers too, though!” someone retorted a little angrily.  “There’s this idea that ‘You can get help from me, but I don’t need it from anyone else’; what do you think that does to us?”

“Oh, I’m sorry if no one has heard, but Lyle Sandlin recently committed suicide,” a small woman in plaid pants said hesitantly, hugging her knees to her chest.

The entirety of the room went quiet, and several heads were bowed.

“Wonderful man,” someone choked out.

“There’s been a lot said since his death,” the woman in plaid continued, fiddling with her sleeves.  Someone else added: “People keep asking – ‘How can you be a listener for so many and still not reach out for help yourself?'”

“Well, that almost comes back to accountability in research,” her neighbor responded.  “He’s distinguishing between his profession and his life pretty much the same way I do.  I’m a PhD student, and I always have to think about what I’m doing today, and say to myself ‘Today, I am a worker, and not a survivor.’  But are these intersectionalities [sic] really to be separated?”

“So, what would a good mad helper do?” one of the organizers asked

“A mad helper would provide a space for growth, and would not hinder recovery,” the woman in the brown cardigan said easily.  “It’s about giving people the opportunity to fail.”

“To fail?” the organizer demanded, pausing mid-typing.

“To fail.  To use crisis as an opportunity for growth,” she clarified, this time getting a nod of understanding.  “It’s teaching others how to negotiate with psychiatrists through seizing our own experience.”

On Friday, author Erick Fabris would support this view.  When he was asked why he chose to interweave segments of his life story into his text, Tranquil Prisons – which is an argument against forced treatment that also details the hospital experience and mental care history – he replied with: “It’s important to hold on to the experience of not only what it was like to be crazy, but also what it was like to be treated so unfairly.  I felt it was necessary to invoke it if I wanted to defend it, to help others understand.”

The art therapist squirmed in her seat.  “I feel like art therapy and psychodrama can truly help,” she said, gesturing expressively.  On Friday, a book talk audience member – a little woman donning bright red lipstick – would support this view.  “These programs gave me so much pleasure,” the rosy-lipped brunette said thoughtfully, “because I was being creative.  I was accomplishing something.”

“I know what would really help,” someone exclaimed loudly.  “Making meds optional!”

Looking back now, I’m reminded of Sarafin, the mad cartoonist who presented at Friday’s book talks.  Her autobiographical web-comic-turned-graphic-novel, Asylum Squad Side Story: The Psychosis Diaries, will be launched today.  She describes herself as “anti-psychiatry”, and doesn’t generally agree with using drugs to treat conditions.

Madness is a way of being!” the person said again, loudly.  The room roared in agreement.

“Well, hold on,” my neighbor, shifting, interrupted shrilly.  “There’s this idea that it’s chic to be called mad.  We’ve been going on and on about how little they do; now, we’re as guilty of discrimination as they are!”  The shouting had stopped long ago.  “We have to create functional models of accountability for ourselves, too!  We can’t defend ourselves by relying on and excusing our own stereotyping.  We’re shaming really strong potential allies.”  She cleared her throat and raised her chin.  “We have to get our shit together!”  Wesley jumped.

“You’re right, Stacy,” someone said.  “So right,” grumbled another.  Sighs and grunts of consent sounded.

“So, our time is almost up.  Where do we go from here?” the organizer interjected softly, smiling.

The question – essentially encompassing and validating all those asked throughout Thursday and Friday – has been drifting around in my head ever since.  Where do all of us go from here?  What is the first goal?  Elimination of discrimination, or more careful mediation of medication?  What can we do to remove stigma and reward peer support?  And in all of this, whom do we turn to?  The policy makers, the public, our peers?

Indeed.  Where do we go from here?

This entry was posted in On Humanity: Events, Policy, Ethics. Bookmark the permalink.

6 Responses to Mad Pride Toronto 2012

  1. I am a member of The Madvocates but was unable to attend the forum due to work! Thank you for posting such a detailed post on some of the discussion! I had heard briefly from my teammates that it went well but your post showed me how well! I’m so glad people were able to connect and that you learned something from it as well!

    • Sophia says:

      Hi! I want to begin by thanking you and the remainder of your team for organizing that discussion! It was an absolutely wonderful thing to witness, and I did indeed learn a lot.

      Where the post is concerned, thanks for the kind words. I’m actually a bit concerned that it didn’t manage to capture the reality of what occurred that day – this forum was truly mind-broadening to an extent that’s difficult to convey in such partial writing. In either case, I tried my best to convey the essence of what occurred.

      • I’m sure being there was a completely different experience!

        Whenever we have spoken with people outside of our group our minds have been opened. Everyone has different experiences and they are all important!

        Hopefully you can attend our smaller sessions when we plan them!

  2. Pingback: Mad Social Work? A Glimpse into Mad Pride Forum « Pride in Madness

  3. Sheila Chiasson says:

    As a member of The Madvocates who was in attendance I appreciate your partial and somewhat edited transcript of the “Mad Social Work?” Think Tank. Reading this has given me an opportunity to reflect on the event, the awesome attendees and a snipit of the dialogue. I was touched by many and feel humbled and grateful to have experienced the energy in the room that day. Soooo, here’s to you and helping me to re-experience the passion I felt that afternoon!

    • Sophia says:

      Hi Sheila! I’ll begin with the same thing I said to prideinmadness: thank you very much for organizing that event! You and your team did a wonderful job, and I’m certain that everyone in the room walked away with the sense that his or her understanding had been greatly enriched.

      Indeed, it’s highly edited and greatly partial. That’s the thing that bothers me most about this post, in fact: its biases. I attempted to mention this within it, but I can’t recall precisely who said what and when; my own viewpoint, of course, greatly influences what I can remember, and how accurately. Regardless of that, I was trying for essence; I’m glad you feel that it was at least somewhat successfully captured.

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