During my graduate studies in social work at Ryerson last year, I did a research project called Centering Sanism – Stories & Visions for Mad Positive Mental Health.   Essentially, this was an academic representation of my real-life process of decolonizing* the way I think about, and practice, my community mental health work.

I have worked as a ‘case manager’ with people diagnosed with ‘serious mental illnesses’ for over 25 years. I am also a family member of loved ones diagnosed with mental illnesses. And I have also struggled with some mental health issues of my own – I have come to endearingly refer to them as my ‘moments of madness’. I could do that, because I am protected from psychiatrization by my various privileges – whiteness, long-term employment, middle-class status, mainstream lifestyle, university education, etc … Over the years, I squirmed my way through the question: What is the difference, really, between myself and the ‘clients’ that I work with? And more importantly, why does this matter?

Going back to university as a mature student let me explore these questions further. I started by considering mental health stigma (our negative thoughts), which feeds mental health discrimination (our negative actions), which then causes mental health oppression (our power over others).   I landed here, at sanism, and the bigger picture of power inequities embedded in psychiatric ways of knowing. Along the way I learned about Mad Studies, which focuses on the person over psychiatric diagnoses, creating possibilities for redressing oppressions and shifting societal thoughts and practices.

Once you adopt an anti-oppression lens for one issue you start noticing everything from a similar lens, or at least I did. In spite of my newfound enthusiasm about Mad Studies, I soon became aware of its limitations. Specifically, I did not find that Mad Studies adequately incorporated the interwoven oppressions that people with mental health struggles experience, such as those based on race, class, gender, sexuality, and so forth. After all, one’s experiences of struggles and support greatly depend on the body that carries these experiences.

At school, I was fortunate to be surrounded by professors and students who influenced my thoughts around critical race theories, decolonization, queer studies, and anti-black racism. My research project rooted itself in Madness and Mad Studies, but I was uncomfortably aware of who was taking up this discourse – mostly white educated folks like myself. So I added to Mad Studies the lens of intersectionality, along with the lens of critical social work, and the lens of anti-oppression. This is when Critical Mad Perspectives was born for me, and together, these multiple lenses helped me to see things very differently.

Looking at my community mental health work from a Critical Mad Perspective let me uncover the layers of inequities and microaggressions that keep certain bodies marginalized by their mental health experiences, and grant certain bodies the freedom to playfully call their mental health struggles ‘moments of madness’.   It opened up possibilities for considering a shift in our community mental health practices that is rooted in ‘Mad-positive’ mental health. This was the basis of the pilot research that I did for my master’s research project.

The participants that I spoke with on this topic were people who identified as ‘peer workers,’ meaning that they held both service provider and service user perspectives. They were eager to share their personal stories and experiences, which informed their own vision for a Mad-positive mental health support system. In a nutshell, research participants saw promise for moving forward in the foundations of community, empathy, and love.

The answer to the question Why Critical Mad Perspectives matter? lies in the overall findings from my research and discussions with participants:

 

• Intersectionality is overlooked in a pathology approach:

 

As long as dominant mental health practices rely on a patholigizing approach that labels and treats mental disorders, important social contexts are missed—contexts that relate to what contributes to mental health distress in the first place. Using a lens of intersectionality helps to contextualize someone’s mental health experiences and understand how power, privilege, and oppression operate upon that person.

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“Mental health doesn’t just happen to people”

“It’s the isms, the discriminations, the multipleisms.”

“Identity is not a chemical imbalance”

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The comments from research participants reinforced the point that mental health issues are not a separate occurrence. Rather, compounding experiences of discrimination are contributors to mental health distress. And intersecting identities make some more vulnerable to pathologization then others.

 

• Madness is a human rights and social justice issue:

 

The human rights code is meant to protect everyone with disabilities from discrimination, while social justice seeks fair and equitable treatment of people within society. While these social guideposts shape our lives and are accepted by most people unquestionably, when it comes to mental health disabilities and Madness, there is great resistance to framing these experiences as human rights and social justice issues.

---

“We are basically the same blood”

“There is this underlying power imbalance”

“Focusing on the brain disease lets everything else off the hook”

---

Participants are telling us to put humanity front and centre, not diagnosis. Intersecting lived experiences of mental health distress invariably relate to power. Therefore, we need responses that address the whole person and their oppressions.

 

• Non-clinical mental health practices matter too:

 

Our current clinical mental health practices stem from psychiatry, which is rooted in modernist constructions of ‘mental illness’ as binary opposite to mental health. When we view mental health experiences exclusively from this clinical, positivist lens, responses are necessarily void of consideration for the complexities of human distress beyond pathology. In other words, there is little space for other ways of knowing in a system that dominates through solutions rooted in diagnosis and medication. Alternatives that do not feed the business of psychiatry will hardly be welcome. Yet research participants were unanimous in naming non-clinical practices as the key to widening our mental health practices and moving forward in ways that have the capacity to make a difference to people marginalized by their mental health experiences.

---

“There’s lots of different ways that emotional pain, can transpire”

“That is their answer—let’s sedate people”

“It’s not in their interest to divert to non-clinical practices”

---

De-centering clinical practices means looking beyond one narrow dominant approach that relies predominantly on medicating emotional distress. Participants’ comments raised the question – Where is the space for other methods? By challenging the business of psychiatry, we are making space for non-clinical practices and Madness, in all its critical forms.

This research continues to be front-of-mind for me, even now that I am finished my studies and back to work as a community mental health worker. I am looking for ways that the theory of Critical Mad Perspectives can influence my practice as a social worker, and beyond.

While Critical Mad Perspectives is helping me to dig deeper for the whole person buried beneath confining psychiatric labels, this theory opens up many possibilities for thinking differently about mental health issues and the people affected by them.

In practice, this means moving towards a Mad-positive support system that recognizes oppression in all its forms as a contributor to mental health distress, and that is directed by people’s lived and contextual experiences.

In education, this means ensuring critical mental health discourse at all school levels to challenge the dominant biomedical teachings around mental health, and to foster complex, creative responses for making our society more genuinely inclusive and just.

In research, this means pushing the boundaries of acceptable knowledge to overcome historically imbedded power and rights issues, and influence policy and systemic-level change.

All of this speaks to the possibilities for Critical Mad Perspectives to shift the conversation about Madness and its interlocking layers of oppression. This theoretical framework provides us with a multi-layered lens to examine social issues of all sorts, and to use this as a tool for community building and solidarity in fighting injustices on many levels. Mostly, it is about hope – that by widening our understandings in critically important ways, we will soon target the real sources of mental health stigma, discrimination, and oppression.

 

Written by Lois Didyk

 

* decolonizing refers to the process of undoing colonialism, thereby challenging the establishment and maintenance of dominant ways

Lois Didyk is a recent graduate from the Master of Social Work program at Ryerson, and can be reached at ldidyk@ryerson.ca.

I first was introduced to Ukrainian-Canadian artist William Kurelek in 2012, when the extended version of the original documentary William Kurelek’s The Maze (7) was screened in a church near my house as part of the “Rendez-vous with Madness Film Festival.” The original 1970 film was based on 1953 psychiatric art that William Kurelek had painted while a patient in Maudsley Hospital, London. This bleak self-portrait that revealed “the darker side of human nature” (1) led me to explore his later work in the Art Gallery of Ontario (AGO) when I happened to be there as a performer in a sound poetry group.

William Kurelek’s The Maze – Official Trailer from Nick Young on Vimeo.

“The Maze is a painting of the inside of my skull”, William Kurelek

I remember studying a large tableau of Kurelek’s entitled “Don Valley on a Grey Day” (1972) and “Self-Portrait” (1957) which showed a shift from the “portals to his suffering” (4) of his asylum days to his “new post-conversion path” (4). This painting, which glared back at me in AGO’s Thomson Collection (6), shows “a confident and optimistic self” with “narratives [which] are more orderly rather than free-flowing, painted as photographs and postcards neatly stacked to a bulletin board.” (4)

I recall being fascinated by the way Kurelek would sign his name in the bottom right corner of his artwork. It looked to me like the etchings on an asylum wall. I later learned that “when urged by [his employer and art dealer Avrom] Isaacs to provide signatures on his work, Kurelek did so with a cross above his initials to indicate that his art was strictly at the service of God.” (4)

Youth and “Devouring monsters”

A child during the Great Depression, William Kurelek’s family moved from Alberta to a new farm in Manitoba. William recalls having trouble with “hallucinations” and “visions of devouring monsters” as a young boy (5). He also had a strained relationship with his father and was bullied by older boys at school (3). Perhaps William’s intense work ethic came from his parents’ farm in Manitoba where he had “to get up at 6 am to fetch the cows for milking” (3). Known to be the “dreamer” (5) among his numerous brothers and sisters, William regretted never being able to please his father. Scorned for his lack of athleticism and mechanical aptitude (5), William found some confidence at a young age through his ability to draw (3). While feeling isolated and confused about his identity, a young William Kurelek found himself working at a lumberjack camp in the bush in 1947, where he sought “peace of mind and strength of body” (5).

In 1949, William graduated from University of Manitoba with a Bachelor of Arts (Latin, English, History Major) (2). Instead of following the path his father envisioned for him, William was set on becoming an artist and enrolled at the Ontario College of Art in Toronto, where his studies were curtailed by a decision to move to England in 1952. While in England, William’s “mental health deteriorated” (1) to a point where he felt inclined to commit himself to psychiatric care.

Now he’s committed

As a patient in Maudsley Hospital, William “described his problem as depression and depersonalization. He was at this time an extremely introverted, isolated personality, obsessed with his own problems and almost incapable of relating to others.” (5) “In the small high-ceilinged room that served as bedroom and studio, its tall, narrow window overlooking the lawns and trees behind Maudsley, Bill began work on […] strangely diverse pieces.” (5) “In October 1953, Dr. Davies wrote to the senior physician of Netherne, requesting admission on a long-term basis for a highly talented artist. […] Bill was described as having a schizoid or introverted personality.” (5)

While at Netherne, Bill’s depression spiraled into a suicide attempt. “Bill’s gesture, on August 11, 1954, involved eight sleeping tablets, a new razor blade, and two months of planning.” (5) “He was found in a cupboard. His stomach was pumped, and his numerous shallow cuts were cleaned, he woke up in a locked ward.” (5) “I Spit on Life (c 1953-1954) painted not long before he attempted suicide in 1954, is quite possibly Kurelek’s bleakest analysis of how his past had affected him”. (4)

According to Edward Adamson, a British art therapy pioneer and staff member at Netherne, “it was through paint that William found his own way back to health.” (4) “Later that year, Kurelek […] underwent a series of 14 electroconvulsive therapy (ECT) sessions” (4). “Electro-shock”, was (and still is to this day) deemed to be beneficial for patients suffering from severe depression. “In the fifties, Netherne averaged one hundred treatments per week.” (5) “In clinical observation, ECT reduced short-term memory, usually leaving long-term memory untouched.” (5) “The first treatment, unmodified [by the muscle relaxant scoline], sprained [William’s] back” (5)

In 1955, William Kurelek was discharged from Netherne (2). This “outsider” (2) and “non-conformist” (4), with a hazy memory from his multiple shock treatments, was more determined than ever to pursue art as a career path and promptly found work as a framer and “trompe-l’oeil” (fool-the-eye) still life artist in the British art scene (5).

Eschatological & prolific work

In February of 1957, William Kurelek would formally join the Roman Catholic Church (5). This conversion gave him the faith to carry on. (1) His later work was often “eschatological” (4), in other words, forecasting apocalypse or planetary doom, and definitely shifted toward themes of “greater moral and religious meaning” (2). His religious search had begun while at Maudsley, where he met a motherly therapist who had battled her own depression with faith. (3) “Whatever it provided to him spiritually, Kurelek’s conversion connected him to a very different religious tradition than that of his [Ukrainian peasant] ancestors.” (4)

In 1959, Kurelek would take his newfound faith and framing experience back to Toronto. He had studied the style of master painters Pieter Brueghel, Hieronymus Bosch, Van Gogh while a mental patient in Europe. In June of that year, he took a sea vessel called the Ivernia back to his homeland. (5) When he arrived in Toronto, William “registered for teacher training at the Ontario College of Education. He was devastated to be rejected on the fourth day as psychologically unfit for the profession.” (5) However, he was given opportunity to work as a framer at The Isaacs Gallery in Toronto with his extensive framing experience garnered abroad and his keen and detailed “trompe-l’oeil” artist skillset.   “In a closet under the stairwell [in the Isaacs Gallery workshop] Bill kept a bedroll and would take a nap in the middle of the night when he was framing or painting.” (4)

In 1960, Kurelek would have his first of many art shows at The Isaacs Gallery. “[His] first exhibition with Isaacs […] consisted of some twenty paintings” including his 1957 self-portrait. (5) “The first Kurelek exhibition drew the biggest crowd the four-year-old gallery had ever had.” (5) “Prices ranged from $160 to $500, and paintings sold briskly”. (5) “The artist enjoyed framing. He usually framed his own work, often in colourful Ukrainian designs and old barnwood. He would continue to frame for Isaacs until 1970, and to use Isaacs’ facilities for framing his paintings, keeping track of the materials used and reimbursing his dealer.” (5)

In 1962, William Kurelek met Jean Andrews in Toronto and they married shortly after that same year in the “Church of Our Lady of Perpetual Help, at Mt. Pleasant and St. Clair Avenue.” (5) “A week’s honeymoon was spent in Quebec City, Montreal, and New York, much of it in art galleries.” (5) “Jean was open and calm as he was shy and intense […] she would give him the help he needed when his depression threatened to return.” (3) The couple would have four children.

In 1965, the Kureleks would move to the Beaches. (5) “Bill lived in the middle of one of Canada’s largest cities, yet remained rural by attitude and inclination. His East-end neighborhood bordered on Lake Ontario. A ten-minute walk would bring him to the beach, and a shorter one to a deeply wooded ravine.” (5) “Working in a very small studio in the basement of his Balsam Avenue home in Toronto, he painted on a flat table surface, never an easel.” (4) “The Cuban Missile Crisis of 1962 led to a rash of private [bomb] shelters in the Toronto area […]” (5)

This Cold War paranoia affected William deeply, to a point where he became obsessed with building a bomb shelter (with amenities) in the small basement of their home. “From the late sixties on, Isaacs frequently expressed his concern that Bill was painting too quickly […] Bill continued to work fifteen and eighteen-hour days”. (5) In 1969, William Kurelek was invited to a Cornell University seminar to speak about mental illness. (2) “[William] was [also] invited everywhere as museums across Canada, the United States, and England showed his work.” (3)

Neither weak nor lazy

“Perhaps his most marked quality: extraordinary self-discipline. Often cloistering himself away for days at a time to complete a series, Kurelek thrived under the constraints of time and space, working all hours of the day and night, and often fasting for the duration in hermetic isolation.” (4) “Henry Slaby, Kurelek’s accountant in the 1970s, asked the artist why he worked so hard: ‘He said he felt an inner urge-something pushed him to produce, and he felt fulfillment in it.’” (5)

“Through Dr. James Maas [of Cornell University], Bill would participate in an award-winning documentary film on his life, and the publication of his autobiography. […] Maas made it possible for him to comment on his slides to an audience of some twelve thousand students in a university concert hall.” (5) “Bill’s research methods […] were heavily dependent on photography. Something between one-third and one-half of the Council’s grant of nearly five thousand dollars went into cameras, film, and the cost of filming his drawings. He carried two relatively sophisticated cameras and sometimes advanced using both at once, like a Western gunslinger.” (5) “He photographed from the windows of hotel rooms, and from taxis and speeding trains.” (5)

In 1976, one year before dying of cancer, Bill received the Order of Canada. He had made more than 2000 paintings in just 25 years. (4) Bill reconciled with his father while dying in the hospital and “wanted to show him photographs he’d taken of his Ukrainian trip.” (3) “His editor, Mary Cutler of Tundra Books in Montreal, said of him: […] ‘He liked to paint in series, and he would retreat to a hotel room or to his farm for 10 days at a time, attend mass, each morning have a cup of coffee, chew wax and paint for as long as seventeen hours a day.’” (1)

Maze

While Kurelek’s 1953 painting “The Maze” was what first got me interested in the man, I found it particularly compelling that the white rat stuck in a compartment at the center of a bleak psychiatric mind-maze, was able to navigate out and lead a fulfilling life, while leaving a significant mark in the Toronto art scene, to a point where psychiatric patients, like myself, can enjoy his “Self-Portrait” (1957) on an outing to the AGO or be inspired by his eccentric genius when they stop in and browse material at their local library branch.

Written by Toshio U-P

Works Cited

1) “William Kurelek-Painter•illustrator•author”, Canada House Gallery, Trafalgar Square London, 11 January to 8 February 1978, An exhibition organized by the High Commission London in collaboration with the Isaacs Gallery, Toronto and William Collins Publishers, London, Catalogue published 1978, Printed by Merlin Colour Printers Limited.

2) Website: William Kurelek ǀ The Messenger

Address: kurelek.ca/biography

3) “Breaking Free-The story of William Kurelek”, May Ebbitt Cutler with Art by William Kurelek, Tundra Books, Toronto, 2002, p.12, p.16, p.20, p.30

4) “William Kurelek ǀ The Messenger”, Essays by Tobu bruce [et al.], Library and Archives Canada, Catalogue of an exhibitionheld at Winnipeg gallery, Art Gallery of Hamilton and Art Gallery of Greater Victoria, 2011-2012. p.106, p.50, p.52, p.48, p.49, p.56, p.104, p.180, p.136, p.138, p.13

5) “Kurelek-A Biography”, Patricia Morley, Macmillan of Canada, Toronto, 1986, p.21, 18, p.52, p.4, p.88, p.92, p.101-102, p.103, p.85, p.109-110, p.116, p.145, p.148, p.155, p.156, p.158, p.171, p.174, p.202, p.175, p.233, p.304, p.236, p.242

6) SELF-PORTRAIT (1957)

[William Kurelek]

1957

watercolour, gouache and ink on paper

47.5 x 38.0 cm

The Thomson Collection, Art Gallery of Ontario, Toronto

7) THE MAZE (1953)

[William Kurelek]

1957

91 x 121 cm

Bethlem Royal Hospital, London

8) William Kurelek’s the Maze, Dir. Robert M. Young, Toronto Premiere (Rendezvous with Madness Film Festival), October 19, 2012.

Written by Kevin Healey

For some “mad” is an identity, for some a badge of honor, or a cap-badge worn as an act of resistance. Others would seek to define “Mad” as something more, to define it as a category of person, a group to which some people rightfully belong and others do not. For some it is, like the song: “Me, a name I call my-self,” – sometimes. For some, it’s just a word we use when no other word better fits some quality we are trying to express.

For me, if you want to tell me what I experience, what to call that, who I am and what to call myself, then I struggle to see how you are doing anything different from anyone else who would seek to do the same and impose their terminology on me. I thank you for trying to be of assistance, but I’m well able and quite happy to do that for myself.

Ken Robinson shares as a joke a line by Jeremy Bentham:
“There are two kinds of people in the world: those who like to divide the population in two,
and those who don’t.”

Me? I try to remain in the latter group.

Paolo Freire wrote about how sectarianism becomes a powerful force amongst those who are oppressed – the sects and sub-sects we divide ourselves into fight against each other and in that fight we lose focus of our shared struggle for emancipation. That we do this only aids those who continue to oppress. It is easier to divide and fight amongst ourselves than it is to hold true to common cause. We become alike with ants or rats – climbing up on each-others’ backs to the top – that we might be installed as the new oppressor in the manner of the pigs in Orwell’s Animal Farm, “All animals are equal, some animals are more equal than others.”

Desire to define terms we use and how they must be used comes — maybe — from a good place, seeks clarity, but it too easily, too often ends up sucking like a big sucky-thing. Language is not fixed and if it were then it would fail –- because the world it describes is not fixed but constantly evolving, as we too evolve and grow and too our understanding grows as we act in and engage with the world.

You and I might use the same word, but we will use that same word to mean a whole variety of things. Some of that meaning will be shared, some not. “Mad” to you is not quite the same as “mad” to me.
When we seek to impose our words on others, or when we seek to impose our preferred meaning of particular words on others – telling them how, when, and where they must, and must not use a term, whether they can use it — is that not just what those who we might criticize do to us: tell us what words to use to name ourselves? I choose not to play that game.

It is fascinating for me how the word “diagnosis” has become so important in our society – of course, the common meaning in modern discourse, as you’ll find in any dictionary is that of “medical diagnosis”, or “diagnosis as pertaining to medicine”.

Yet if we look at the etymology (the origins of the word) it means:
“To set apart from, in order to come to know. “

Having been set apart is certainly something we might experience when we are given a diagnosis: set apart from the rest of humanity, we become “the diagnosed” or confined, as Franz Fanon put it, into ‘the zone of nonbeing’, no longer being worthy to be considered as a being, or as human.
No longer seen as human, but required, or at least expected, to conform to a category or fit within the box of the diagnosis we have been given. As is so often the case when we seek to fit people into boxes, many of those we squeeze into such boxes will struggle, and as a result some will find themselves in a state we might call “mad.”

We have become so keen to diagnose ourselves, and each other that it has become a favourite pastime. So much so, that the Internet is replete with handy-dandy apps, tools, and schemes to help us do just that in a few clicks.

Maybe we don’t want to be same as “them” – and for good reasons. Maybe in resisting those identities imposed upon us we need to seek and to create our own identity. And in doing so find like-identity with others. This is a natural process and a good thing when we make our own choices. But there is also a fine line between making our own identity and imposing identities on each other and / or also excluding others from using a descriptor that they feel suits them because we decide it does not fit our idea of how to use the same term they choose for themselves.

When “mad” becomes a term that is defined by a few who occupy self-appointed positions of authority, how is that any different from any other diagnosis imposed upon us by a different few in different self-appointed positions of authority?

I believe each of us has the right to name our own experience in our own terms and to call ourselves whatever the fuck we want…
 And think it would be a better world if we could make space for each other to do that…

If we lay claim to the word “mad” – if we claim authority to define how others must use “mad” then that is problematic for me.

What power relation, then, and with whom, are we exercising when we claim authority to know how the word “mad” must be used by others? If we are merely claiming power of how that word applies to us then there is no harm – but is that all?

So, if I’m suggesting it’s problematic to seek to define how others use “mad”, at least about themselves — and I am — then what might we do?

Mad is the word

If ever there was a word that defies definition then surely “mad,” and not “grease”, is “the word”.

Suspending ideas about madness

If on the one hand, seeking to define how others use a word is tricky, then, on the other, explaining what we mean when we use a term is a good thing.
In versions of practicing dialogue that I learned, doing this is part of what is sometimes called “suspending judgment”. That is not to mean — or at least only to mean — withholding, not-judging just yet, but meaning to hold-up our judgments, assumptions, and mental models that they might be seen, by all, including ourselves.
So in that spirit, here is what I mean, at least what I mean right now, today, as I write this, when I use the word “mad”. You’ll have your own meaning some might be similar.

Mad as state of being

To me “mad,” or madness, is not an identity but a state of being, or an attitude. It may also be useful to know that for me identity, too, is something that I experience as a fluid thing — not a fixed or categorical thing. For instance, I am known for my work in hearing voices, and am honored to have received the first Intervoice award for Innovation, but I do not call myself ‘voice-hearer’ any more than I call myself ‘air breather.’

I don’t really mind if you do, I just don’t. I do both these things, but I do lots of other things too.
Likewise, I don’t mind you or anyone else calling me “mad” – it is far better thing to be called than many of the things that I have been called. But, still, it is not often something I call myself.
Equally, I’m happy to use the word “mad” to describe some thing I see as having qualities of “mad” in the same way I might use any other term that comes to mind and that best fits what I’m trying to express.

Naming Rights

I believe we each have the right to name our world, name our own experience in the world and name ourselves by using words of our own choosing.
And, just as I claim that right for myself, I also believe you have the same right.
However, I’ve also learned that when it comes to the words we use to describe others it pays to be respectful and use language that does the least to categorize, pigeonhole, or box people in.
The words we choose to describe others reveal much more about ourselves than they can possibly say about another.

Mad, a name I call myself

I don’t really call myself anything, I just don’t feel a need to, but “mad” is something I could call myself.

Mad as the natural state of the universe

We don’t call it “madness” but it is essentially the same thing on the grandest possible scale: entropy is the natural state of the universe. Since the Big Bang, all energy has been dispersing at an ever-rapid rate. Even after hundreds of years of human efforts to impose order upon that, make useful gains to harness it, still: entropy rules, ok?

And there is something very odd, very moralistic, in an understanding that energy must be useful, that unless used for gainful human purpose it is wasted, when energy just is.

What is madness but the human form of entropy? The chaos, creativity, entropy, resistance, refusal to conform and comply that is judged by society as not useful; the wild and the wildness within us that we fear most?

Entropy and madness are both necessary – without some chaos nothing can change. And there is plenty in this world that needs to change so we best get used to some madness.
Madness is the beginning of a journey it’s not supposed to be the end result.
-Jeanette Winterson

Madness and illness

For me there is no mystery in why people find themselves experiencing what often gets called “mental illness” – none whatsoever.

Life can be overwhelming. People will and do get overwhelmed by life events, we can and do become disconnected from each other and we can and do become disempowered. This is not in itself an illness, though it can lead to us becoming very ill indeed: as social animals, isolation does make humans ill.

However it manifests, a person’s struggle always makes sense within sufficient context. If it doesn’t make sense to me yet then that is because I have not yet drawn the boundaries of that context sufficiently-wide to enable me to see ways in which it can make sense.

The ways we diagnose, categorize, and describe people as “ill” are largely social constructs. As an example, the list of “symptoms” of “psychosis” are things that require some judgment of societal acceptability: that line of what is acceptable/not acceptable is drawn in accordance with social attitudes, mores, and habits.

Societies have, for centuries had, ways to compartmentalize and cast to the periphery those people deemed to be “too different”.

We fear the unknown, and “madness” is the very manifestation and emergence of the unknown from within us. The acceptability (or not) of the apparent chaos within a person or surrounding a person is largely a social judgement – where the dividing line sits is determined socially. On one side of that line and you might be seen as odd, eccentric, strange, talented, a great artist; while on the other side you will be seen as too weird, too different, others will be afraid and want to contain you so they can feel comfortable again.

“Mad” as resistance, rebellion

“Mad” is sometimes used as a term to signify resistance to that crap. Especially when that crap involves a person being deemed so different that they must be “ill” then “Mad” might be a term a person might use to reclaim rights and self-determination.

Mad as right to be, right to be different, is something we might use in defiance, to resist ideas imposed on us: such as, that we struggle because of ‘illness’ or because we have some ‘biological deficit’, or ‘brain disorder’ when really it’s just that people are different, so how about you fuck off and let me be.

In that, for me “Mad“ is a way to declare “I can think and speak for myself, thank you very much.”
Certainly, that is in large part what MADx is about – co-creating spaces in which we can come together to find our voice, use our voice, witness each other and be with each other doing just that.
Likewise, for me the term “survivor” means…

I’m still here
– you fuckers!

“Mad” can also be celebratory – of what it takes to fight our way through all the layers of crap so we can find a place we are good with and good with ourselves in that space.
Mad as celebration

For me the best, most generative, most inclusive way to use the term ‘mad’ is as a defiant, celebratory, unapologetic “Mad” — as joining together in a sense of pride both individual and collective – “this is me, hear me roar!”

In the way that Ernest Becker said of reality:
“Reality is just a word and should only be used with quotation marks around it”
I often think of Mad in a similar way…

So here’s to the “mad” ones, eh?

Kevin Healey © November 2016

 

Kevin Healey “Mad, innit?”

 

 

References

 

• Grease [Video file]. (n.d.). Retrieved from https://www.youtube.com/watch?v=x18pVYUHJwA
• Fanon, F. (2008). Black Skin White Masks.  New York: Grove Press. Translation by Richard Philcox
• Foucault, M. (1995). Discipline and punish: the birth of the prison. New York: Vintage Books.
• R. (2016). Here comes MADx …by night. Retrieved December 19, 2016, from https://the-rebellion.ca/2016/07/13/here-comes-madx-by-night/
• Bring on the learning revolution! (n.d.). Retrieved December 19, 2016, from https://www.ted.com/talks/sir_ken_robinson_bring_on_the_revolution

• Winterson, J. (2011). Why be happy when you could be normal? Toronto: Alfred A. Knopf Canada.  

  
  

Images

Original design by Kevin Healey

 

 

 

 

 

Photo: By Photograph by Oren Jack Turner, Princeton, N.J. Original image cleaned/leveled and cropped by User:Jaakobou. [Public domain], via Wikimedia Commons
Design Layout, misquote by Dave Umbongo

 

 

 

Photo: Unknown, from: http://www.nndb.com/people/323/000095038/

Layout: Dave Umbongo

–Our Vision–

Mad Pride Toronto is a grassroots peer movement that

● Celebrates and empowers all types of ‘madness’ and ‘neuro-diversity’

● Challenges diagnoses, interpersonal, and social stigma of mental ‘illnesses’ and ‘disorders’

● Is anti-oppression and welcomes all individuals and entities to participate

● Provides a supportive network for neuro-divergent and marginalized people

OUR MISSION is to create an inclusive and supportive space where consumer/survivors/ex-patients, allies, peer workers, community members, students, and citizens can find and build strength, creativity, and community. Together we collectively connect people and communities to advocate for human rights and the appropriate treatment of those diagnosed or labeled as mentally “ill”

As Mad Pride Toronto’s publication,

Mad Times Magazine is committed to celebrating ‘madness’ in all its forms and expressions. Through critical discourse, art, and community collaboration, we question accepted methods of diagnosis and treatment. Our work aims to transcend stigma by understanding how society creates and labels mental ‘ill­­­­­nesses’ and ‘disabilities.’ Mad Pride Toronto, and by proxy Mad Times, challenge oppressive beliefs through open, inclusive group structures, which empower and engage personal opinions and views. There is no strict definition or format of Mad Pride and Mad Times; we engage with diverse communities and individuals to better understand our group and ourselves.
We aim to deconstruct social barriers caused by stigma. This is realized by community education, advocacy, and by sharing personal experiences and wisdom. We also acknowledge that certain societal pressures and issues can cause psychological distress; we aim to identify these social issues by providing an open forum and collaborative medium for the broader community. The term ‘Mad Pride’ intends to invoke a celebration and awareness of ‘mad’ ideas, studies, and values—especially those concerning individuality, the existence of neuro-diversity, and the upholding of integrity and basic human rights.

A Movement

Mad Times is free of vertical and horizontal hierarchies and refuses any strict format. Rather, it is a free form, grassroots publication where the contributors themselves choose different modes of expression. We do not focus on clinical diagnoses or labels: we understand there to be neuro-diversity among individuals’ perceptions and subjectivities. We welcome and encourage the participation of all allies – sane, absurd, and otherwise. Mad Pride and Mad Times are inclusive and engage in intersectionality. The group is founded on a radical inclusivity which is the foundation of our ever-shifting and ongoing activism and discussions.

Advocacy & Collaboration

By working in solidarity with other ally groups, we advocate for the rightful treatment of people who identify as ‘mad,’ have been neglected by institutions, and other marginalized individuals. We understand that ‘mad’ issues are related and not exclusive of other socio-economic or socio-political factors and are therefore connected to multiple institutions of oppression. By working with other ally groups we find commonalities and support each other’s efforts. Through our work with different groups we nurture and build community and a space for free-form expression and collaboration. From petitions and academic discourses, to protests and street marches, Mad Pride and Mad Times are on all fronts of social activism.

Understanding Our World and Ourselves

It is our right to be as we are and use our respective subjectivities to understand ourselves and the world around us. We question and challenge psychiatric, as well as anti-psychiatric, perceptions and treatments of mental ‘illnesses’ and seek freedom for intra-personal understanding and self-fulfillment. We believe that we have the right to seek the types of lives that are right for us, and interpret our conditions as we experience them. While we ask to be free to interpret and understand ourselves, we do not wish to claim that our beliefs are laws or dogma–through constructive dialogue with different individuals and opinions, we create an inclusive conversation that does not alienate nor condemn any ‘opposing’ beliefs or their respective parties. Paradox is understood as creative and necessary for ongoing discussion. We seek greater understanding of the influence of power and subtle control over both subjectivity and groups of subjects. Character is destiny.

What does advocacy mean? Advocacy is about speaking or acting on behalf of a disadvantaged person (or group), defending their wishes or rights, and remaining loyal and accountable to them despite pressures to do otherwise. Advocacy is also about changing systems for the better by influencing policy, practices, or laws in ways that will benefit people in our community and protect their rights. It requires commitment, focus, and skillfulness.

Advocacy is about speaking or acting on behalf of a disadvantaged person (or group)… Advocacy is also about changing systems

If you are a person with “lived experience,” a “peer,” or a “consumer” then please understand that this, in and of itself, is not valid enough

criteria to be a good advocate. While your identity and your experiences (especially as related to mental health) matter, they alone are not sufficient to challenge some of the tricky and complex institutional and governmental powers influencing our understanding of psychiatric disability and the distribution of resources (e.g. housing, services).

If you are a person with “lived experience,” a “peer,” or a “consumer” then please understand that this, in and of itself, is not valid enough criteria to be a good advocate.

I start with this controversial point because over and over again, the most popular advocacy “line” people offer at consults, focus groups, proceedings, etc. for ethical dilemmas and problems with the mental health system is to ask whether “peers were included,” or if, “peers gave feedback.”

Lately, I have challenged this knee-jerk response, because it is predicated on an assumption that if “lived experiencers” were involved in complex systemic issues, they would somehow be offering substantive or innovative feedback for change. Sometimes yes, but often no – not without research into a problem, or speaking with people most impacted, or developing relationships with supportive allies.

In fact, sometimes the very problems occurring in the system are reproduced via individuals who identify as “peers” or people with “lived experience.” Sometimes these peers adopt excessively cheerful or optimistic views of healthcare system delivery as opposed to critiquing it.

They contort themselves to accept clinical or policy justifications and in so doing become extensions of the system through their actions, words, and ability to be socially acceptable and conformist. I have seen examples of peer workers counselling hospital patients on their “best interests” as opposed to listening or following a patient’s instructions and hearing what would allow them to feel they have more control over their lives. There are very few advocacy and human rights campaigns being spearheaded by peer labourers though I think there is powerful potential for organising for change if community capacity were prioritized in this direction.

Thankfully, there are however a number of individuals and small organisations doing collaborative and innovative work to improve the lives of people who are on the margins and addressing advocacy issues related to violence, housing etc. There are smart, organized, coordinated and focused efforts that work to change and improve specific problems thanks to thoughtful planning, thorough research, and earnest selflessness.

We need more strategies like this which are focused on understanding how the system makes economic and policy decisions and directions. It would be great if younger activists and individuals interested in advocacy would create support groups looking at how to better understand the system, what ethical principles we should collectively adopt going forward, and more importantly how to meaningfully evaluate what has worked and not worked in the past for us – by us.

…create support groups looking at how to better understand the system, what ethical principles we should collectively adopt going forward, and more importantly how to meaningfully evaluate what has worked and not worked in the past for us – by us.

I also suggest that our community develop an extremely inquisitive appetite for scrutinizing anything that sounds like “inclusion.” The system knows it is supposed to be “inclusive” – that is not news to people in power, but what kind of inclusion is happening? We consumer/survivors advocated for inclusion years ago, and now we (to some degree) have it, but at what cost, and what kinds of identity and ideas are being included? An advocacy issue that currently needs attention is the Ontario government’s recently passed Bill 41, also known as the Patients First Act on December 7th, 2016.

This Patients First Act aims to ensure patients are at the centre of the health care system. Are there any consumer/survivor groups organising around this? Probably not. Who will monitor advocacy and the new discussions about accountability in a changing landscape within healthcare? The Psychiatric Patient Advocate Office, which is no longer at arm’s length from the Ministry of Health, is going through re-evaluation of its services to better align itself with Ministry initiatives such as the Patients First Act. What will this mean?

If we are to re-invigorate a movement that believes in justice, advocacy, and the protection of rights, we need a new approach that understands that while some gains have been made, there are many other losses we have not even begun to process—let alone respond to intelligently. The landscape of advocacy is changing and the fire of the past has dwindled.

We have fewer advocates. This is true amongst different groups and social movements looking for change.

The pendulum has definitely swung in disturbing directions, but it will swing back. In the meantime, we must be more aware of the losses of certain rights and be more resolute in our efforts to critique “inclusion,” especially the ways it has been used by neoliberal agendas that expend with both advocacy and individuals who cannot thrive in capitalism.

Written by Lucy Costa