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JEMH · Open Volume 10 | Page 1
© 2019 Journal of Ethics in Mental Health (ISSN: 1916-2405)
Peer Reviewed
Turning Mad: A First-Person Account
Mathieu Bouchard
PhD Candidate
Department of Management
HEC Montréal
Université de Montréal, Canada
Abstract
In this commentary, I discuss the ethics of ‘lived experience’ in Mad activism through a personal
exploration of emotion in identity politics. From an autoethnographic standpoint, I reflect on how the
experience of anger has contributed to my identity shift from patient advisor to Mad activist. Building
on these reflections, I highlight some links between systemic injustice, righteous anger, and radical
activism observed across a diversity of spoiled-identity movements. To conclude, I invite the diversity
of Mad folks out there to understand, proudly assert, and channel the raw power of that anger into the
organizing of emancipatory social change.
Keywords:
Righteous anger, Mad Studies, spoiled-identity activism, lived experience, emotion
This paper proceeds in four steps. I begin by sharing some elements of my experience as a
mental inpatient and outpatient. Then, I recount my subsequent stint as patient advisor promoting a
reformist agenda at the clinic where I had previously received treatment. Third, I reflect on how my
moral outrage at the systemic injustice I experienced as I participated in the activities of that clinic’s
research group gave rise to a persistent sense of righteous anger that drove my shift toward Mad
activism. Finally, I highlight that although abundantly described across various spoiled-identity
literatures, the theoretical and practical implications of anger in activism remain largely overlooked
and deserve further exploration.
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Being a mental patient
A few years ago, I was admitted to the psych ward of a mental hospital in Canada. After about
three months as an inmate (split between the mood and the psychotic disorder units), I was discharged
with a brown bag full of pills and offered a 2-year follow-up at the hospital’s first-episode psychosis
outpatient clinic. I realized that, just like in the inpatient ward, at the outpatient clinic drugging was the
main approach to patients’ treatment, whereas social support, talk therapy, or anything other than
drugging, was seen by professionals as peripheral and largely optional. Early on, I felt that what that
clinic had to offer was foreign to my needs.
I needed meaning and purpose, they gave me labels and drugs.
Beginning in the winter of 2012 and over a period of about two years, I was prescribed at least
fifteen different drugs: anxiolytics, antidepressants, antipsychotics, and anticholinergics to mitigate the
tremor caused by the antipsychotics. Although I repeatedly expressed concerns about the effects of
these drugs on my health, I was asked to blindly comply with this mind-blowing polypharmacological
treatment based on the arguments that ‘my’ psychiatrist knew best and that I lacked insight.
1
Despite
my continued experience of various ‘side effects,’ the deleterious impact of the drugs on my health
were systematically downplayed – I was offered simplistic and misleading responses to my sensible
questioning of this all-drug approach. In one instance, my psychiatrist said that I should read the long
list of possible undesired effects that feature on a bottle of Aspirin and implied that, much like with
Aspirin, most of the side effects listed on a box of antipsychotics in reality rarely occurred. Anyone
who has ingested antipsychotic drugs at some point in their lives will know how disingenuous this
argument is.
About six months into my treatment at that facility, as the drug cocktail I was ingesting on a
daily basis was not working as hoped, I was declared ‘treatment resistant’. This notion of treatment
1
The way we usually say “my” psychiatrist always seemed odd to me. I feel that it misrepresents the
pervasive sense I experienced throughout my treatment that the psychiatrist assigned to my treatment
did not work for me. Rather, the implicit understanding seemed to be that I had to submit to her
authority, fit within her templates, and comply with her guidelines. Thus, she did seem to consider me
as “her” patient, but I never felt that she was “my” psychiatrist. Having said that, I will stick with the
use of “my” psychiatrist to keep a smooth reading.
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resistance, I realized, is remarkably biased. If you get better it’s because the drugs work, and if you
don’t it shows you’re ‘treatment resistant’. Either the drugs get the credit or the patient gets the blame.
The answer to treatment resistance, of course, was to increase doses, to add more drugs to the
cocktail, or to switch one drug for another. It seems that the less the drugs work, the more they give
you.
Around the spring of 2014, I was beginning to feel much better and barely checked any
‘symptoms’ on my psychiatrist’s checklist. By that time, and because of my continued insistence, the
number of drugs and the doses I was prescribed had been significantly reduced. Since the early
moments of my crisis, I had been engaging intensively in talk therapy and community-based peer
support, in which I had much more confidence than the drugs. This helped find meaning to my internal
struggles and make tough decisions regarding work and relationships, decisions I had not had the
courage to make until that point. For that, I felt proud and gave myself much of the credit for my
improved condition. In my view, I was feeling better despite the drugs, not thanks to them.
But for my psychiatrist, I was doing better because her drugs had prevailed over my ‘treatment
resistance.’ I found that cheap credit-taking awfully disheartening. And when I asked for assistance to
wean off drugs, she insisted that I was too fragile and would have to stay on a ‘maintenance’ dose of
the various drugs she was pushing for at least two to five years, or else her ‘guidelines’ said that I
would ‘relapse’. At that point, my 2-year follow-up at the clinic was coming to an end. She transferred
me to my family doctor and offered me no assistance whatsoever to wean off drugs.
So, I did that on my own.
Becoming a patient advisor
In the last year or so of my follow-up at the outpatient clinic, I started a PhD in organization
studies and began a collaboration with the research group attached to the clinic. I wanted to study
peer support and patient involvement in psychiatric services through action-research method. They
also agreed that I would collect ethnographic data on the research group’s activities as part of my
thesis. For a while, the clinic’s leaders had been saying that they needed a plan to ‘engage service
users’. I told them I could help them figure that one out. They said good, come on in. Through repeated
frustrations, I progressively realized that the clinic’s interest in user engagement was essentially
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tokenistic: the doctors running the clinic merely wanted to co-opt a few ‘service users’ to give outsiders
the impression that the clinic valued ‘lived experience’ and ‘co-constructed’ service improvements with
patients, trendy terms nowadays. In reality, however, their ‘engagement’ efforts were set up and
managed to prevent patients from gaining a genuine voice or from influencing established research
and clinical practices.
2
This trend toward ‘engaging’ people with ‘lived experience’ in psychiatric services has gained
international prominence in recent decades. Mad researchers have described how ‘user engagement’
is performed by inviting patients to tell their stories in testimonies to fellow patients, their relatives, and
‘mental health’ employees (Costa et al., 2012) or by hiring them as peer workers in existing services
(Fabris, 2013; Voronka, 2017). These analyses show how patient engagement is often implemented
in ways that primarily serve the interests of psychiatric institutions and professionals (e.g. for
legitimation and to attract funding) while offering patients few opportunities to make a meaningful
contribution.
3
What these authors describe is precisely what I experienced at that clinic. Mostly, it was
empty talk and optics management, with no intention to do something real.
At the clinic’s ‘educational’ events, to which the research and clinical staff as well as a few
selected service users and relatives were invited, drug companies usually provided lunchboxes for
everyone. Behind the reception counter, there was a warehouse full of drug samples provided by the
companies’ reps. Pharmas funded the research group’s studies on the efficacy of their products
through ‘unrestricted grants’. The research group’s principal investigators, who were also the clinic’s
director and assistant director, recruited patients as subjects in their drug studies soon after their
admission to the clinic. One study was conducted on the efficacy of an antipsychotic drug which was
systematically offered to patients at their first psychiatrist’s visit after they were admitted. Patients,
including me, were being told this was a better drug because it provoked “little or no weight gain,”
contrary to other newer antipsychotic drugs which cause obesity and diabetes. This was also the
2
For an elaborate and illustrative description of ‘user engagement’ as tokenistic co-optation of patients
in psychiatric services, see Penney and Prescott (2016, pp. 35-45).
3
My view of what constitutes a “meaningful contribution” is based on Sherry Arnstein’s Ladder of Citizen
Participation (1969). This well-known model defines three broad levels – nonparticipation, tokenism, and
citizen power – at which decision-making power in government agency programs is shared (or not)
between the government agents (or in our case, the professionals) administering the program and the
citizens (or in our case, the patients) who are its intended recipients.
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argument used in the consent form that I signed when I was recruited in that study back in 2013, as I
was admitted to the outpatient clinic when I was released from the psych ward.
Later, I became aware that, in parallel with their cumulation of governance, management,
research, and clinical functions, these top psychiatrists were receiving personal financial
compensations from the three companies that commercialize the drug. In articles they publish in
‘scientific’ journals, they disclosed these conflicts of interests as advisory, consulting, and speakership
fees received from these companies. I found this information because, as a doctoral student, I have
access to academic databases that most mental patients either don’t have access to, or don’t look at.
To recruit the number of research subjects they needed to claim statistical validity, they used us, the
clinic’s patients, as a pool of guinea pigs. They didn’t bother to disclose any of their personal conflicts
to us, ‘their’ patients, as they recruited us in their studies and had us sign their consent forms. They
called us their ‘clients’ and, in fact, they used us to test their patrons’ products. We put our health at
risk in their ‘studies’ so that they can collect their consulting fees and publish their corrupt articles –
what kind of deal is that?
Before that treatment episode, I studied business economics and worked several years as an
investment analyst. With that background, assessing business models became a second nature. As
with everything else, I became interested in the clinic’s business model. Early on, I noticed the
apparent misalignment between the clinic’s services and its clientele’s needs. Although I did not have
access to its accounting books, the clinic gave all signs of being quite reliant on the industry, given
the multiple research and clinical activities there that were funded with pharma money and/or related
in one way or another to drug products. There didn’t seem to be an activity there in which drug
companies were not involved. Looking at the big picture of what was happening there, it seemed clear
to me that the doctors running that clinic were serving the industry rather than the clientele.
When I realized that, I felt deeply betrayed.
Turning Mad
The moral outrage that was flowing in my veins as I contemplated what I now saw as a drug-
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money gimmick fed a righteous anger that I channeled into Mad activism.
4
For about two years, I
collaborated with the clinic’s research group. I relentlessly invited them to make their practices more
inclusive and to encourage peer support. In research meetings, I would attempt to bring in the
excluded voice of patients and to question service providers’ one-sided working assumptions. A few
family members also sought to get involved in the clinic’s research activities. I was most often the only
person with known ‘lived experience’ sitting at the table and participating in the research group’s
discussions and activities. I repeatedly argued that the citizenship model of participation I was
promoting required the nurturing of a mutual trust that was incompatible with the continuation of the
clinic’s drug-money gimmick.
5
Along the way, I started a “no free lunch” initiative, bringing my own lunches at research events
and inviting staff members to do as much and reject pharma lunchboxes. About five of them joined
my initiative, and the pharma lunchboxes suddenly became less tasty for those who didn’t. I also
insisted for transparent disclosure of which companies paid for lunchboxes at events. A few staff
members supported my request, which forced the doctors who run the clinic to reluctantly do so. Time
and again, I advocated for greater integrity and transparency at the clinic. Most often, my views were
ignored, minimized, invalidated, silenced. They always resorted to some innovative arguments to
finesse away these issues, to awkwardly pretend that they didn’t quite know what I was talking about,
or to hint that I was exaggerating, making stuff up. It was often suggested that I was the problem: my
attitude was oppositional, antagonistic, slanderous. Some of them sought to invalidate my
disagreements by floating around that I was possibly manic.
As I grew the sense that my efforts to promote reform in the clinic’s practices were futile and
came to see their ‘user engagement’ agenda as empty talk, my belief in patient involvement
progressively disintegrated. When they began to intimidate me so that I shut up on the clinic’s drug-
4
I use the term “Mad activism” in a broad sense that includes a diversity of radical approaches pursued
by people who have experienced emotional/perceptive distress and related treatments, denounce
psychiatry as oppressive, and/or seek to develop by-and-for alternatives to ‘mental health’ (see
Starkman, 2013). For more, see the Glossary section of Mad Matters (LeFrançois, Menzies, &
Reaume, 2013, p. 337) which provides useful definitions of terms such as ‘Mad nationalism’, ‘Mad
ontology’, ‘Mad pride’, ‘Mad Studies’ and ‘Madness’ that are well aligned with my understanding and
use of the term “Mad activism”.
5
Unfortunately, these practices of close proximity with the industry seem to be largely accepted by
regulators and entrenched into medical institutions.
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money gimmick, I promised them that the more they tried to silence me, the louder I would speak out,
which I did. I filed formal complaints to the relevant oversight bodies to denounce their corrupt
activities. At that point, my time collaborating with mental health professionals was over. As my political
horizon shifted, I began reflecting on how we, ex-mental patients, psychiatric survivors, and all kinds
of Mad folks, need to collectively organize in order to render psychiatry obsolete.
Harnessing this righteous anger rooted in my moral outrage, I dropped the patient advisor’s
reformist agenda and shifted toward a Mad political identity oriented toward a political horizon of
radical social change. This identity shift (see Britt & Heise, 2000) allowed me to convert my isolated
experience of shame and fear into a collectivized sense of belonging in the vibrant anger and assertive
pride that I discovered in the Mad movement. Turning Mad legitimated the full expression of my anger
and freed me from the ‘mental health’ epistemic hegemony.
Anger in spoiled-identity activism
During my period of collaborative work with the clinic, I became friends with a dissenting
practitioner, a guy with a remarkable intellectual curiosity. Every now and then, we would get together
and have long conversations about mental health and beyond. One day, over breakfast, I opened up
to him about the depth of my anger – how anger consumed me in the inside. He invited me to further
channel my anger into theoretical inquiry, to explore what this anger means and how it could be turned
it into a positive force for social change. His tip was just what I needed. From there, I began exploring
the role of anger in activism, in social movements, in Mad Studies. I paid attention to how spoiled-
identity activism drew on anger as a fuel for creative defiance.
6
I found out that anger runs deep in
psychiatric survivor literatures. Four decades ago, the early leader of the ex-patient liberation
movement Judi Chamberlin (1977) forcefully connected the collective anger of ex-mental patients to
their activist drive to replace the mental health system with survivor-controlled alternatives:
In the mental patients’ liberation movement, we have examined the ways in which we
6
The term “spoiled identity” refers to the ostracism experienced by members of social identity groups
bearing a common, ostensible attribute seen as shameful based on dominant social norms of
acceptability, which is brilliantly described in Erving Goffman’s (1963) Stigma: Notes on the
Management of Spoiled Identity.
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were treated when we ‘went crazy.’ . . . We came together to express our anger and
despair at the way we were treated. Out of that process has grown the conviction that
we must set up our own alternatives, because nothing that currently exists or is
proposed, fundamentally alters the unequal power relationships that are at the heart
of the present mental health system. (p. xiii)
The anger felt by mental patients is frequently diagnosed and dismissed as a symptom of ‘mental
illness’ (see Sen & Sexton, 2016, p. 168). The pathologizing of emotion is part of an entrenched pattern
that allows psychiatry to dominate its clientele through the systemic invalidation of their experiences.
Many psychiatric survivors have denounced this invalidation, and some have shown how it is used to
repress the agency of patients and submit them to the authority of therapists. Ji-Eun Lee (2013), for
instance, writes that “anger is often the starting point of recognizing the injustice around us [psychiatric
survivors] and a precondition for taking action” (p. 119). Echoing this ubiquitous patients’ experience
of epistemic invalidation, Maria Liegghio (2013) links her anger at seeing the opinions and desires of
her elderly mother pathologized, dismissed, and seeing her being treated against her will by mental
health professionals to the concept of epistemic violence. Liegghio (2013) defines epistemic violence
as an array of “institutional processes and practices committed against persons or groups . . . that
deny their worldviews, knowledge, and ways of knowing and, consequently, efface their ways of being”
(p. 123).
Mad writers Lee and Liegghio both connect their lived experience of epistemic violence to the
anger that drives the mobilization of activist communities engaged in the pursuit of emancipatory social
change. Social movement theorist William Gamson (1992) argues that as a response to systemic
oppression, activist communities nurture “the righteous anger that puts fire in the belly and iron in the
soul” (p. 32). The role of righteous anger in driving collective action to challenge systemic injustice has
been described in many other spoiled-identity activist literatures as well, including but far from limited
to feminist consciousness-raising and self-help (Hochschild, 1975; Taylor, 2000), HIV/AIDS treatment
activism and queer politics (Gould, 2009), U.S. Afro-American civil rights movements (Morris, 2017),
and indigenous peoples’ decolonization movements (West-Newman, 2004). In these writings, the link
between systemic injustice, righteous anger, and spoiled-identity activism is often presented as self-
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evident and mentioned without further exploration of its theoretical and practical implications.
7
We still need a much deeper and more contextualized understanding of the meanings and
potentialities of anger in spoiled-identity activism. In my experience, anger consumes you in the inside
until you channel it into meaningful political action. When turned into activism, righteous anger can
become a formidable force for individual and collective emancipation. For the diversity of Mad folks
out there, it is critical that we understand our righteous anger and learn to channel its impulse into an
array of emancipatory agendas.
My bet is that, with these preliminary reflections, I am merely scratching the surface of a topic
of great importance to Mad and other spoiled-identity communities. With this brief commentary, I wish
to invite Mad folks to work on this line of inquiry. Let’s organize locally in a variety of ways to explore
the situated meanings of our anger. Let’s proudly assert our shared anger through a diversity of
discourses and actions that legitimate it. Harnessing the sheer power of anger may help us reclaim
the meanings of our experiences, challenge sanist prejudice, and strengthen our much-needed yet
still precarious survivor-controlled settlements.
References
Arnstein, S. R. (1969). A ladder of citizen participation. Journal of the American Institute of Planners,
35(4), 216-224.
Britt, L., & Heise, D. (2000). From shame to pride in identity politics. In S. Stryker, T. J. Owens, & R.
W. White (Eds.), Self, identity, and social movements (pp. 252-268). Minneapolis: University
of Minnesota Press.
Chamberlin, J. (1977). On our own: A compelling case for patient controlled services; A real
alternative to the institutions that destroy the confident independence of so many. London:
7
One notable exception to this lack of theorization is found in Gould (2009), who links the mounting
anger in HIV/AIDS treatment activism in the mid-1980s (after the U.S. Supreme Court ruled in 1986,
in the Bowers v. Hardwick case, in favor of Georgia's anti-sodomy statutes against homosexual sex)
with the queer communities’ expanding political horizons and shifts in tactics, from mainstream
advocacy toward increasingly confrontational and disobedient forms of activism.
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Mind Publications.
Costa, L., Voronka, J., Landry, D., Reid, J., McFarlane, B., Reville, D., & Church, K. (2012).
Recovering our stories: A small act of resistance. Studies in Social Justice, 6(1), 85-101.
Fabris, E. (2013). What could go wrong when psychiatry employs us as “peers”? In B. A.
LeFrançois, R. Menzies, & G. Reaume (Eds.), Mad matters: A critical reader in Canadian
Mad Studies (pp. 130-140). Toronto: Canadian Scholars’ Press Inc.
Gamson, W. A. (1992). Talking politics. New York: Cambridge University Press.
Goffman, E. (1963). Stigma: Notes on the management of spoiled identity. New York: Simon &
Schuster, Touchstone Books.
Gould, D. B. (2009). Moving politics: Emotions and ACT UP’s fight against AIDS. Chicago:
University of Chicago Press.
Hochschild, A. R. (1975). The sociology of feeling and emotion: Selected possibilities. Sociological
Inquiry, 45(2-3), 280-307.
Lee, J.-E. (2013). Mad as hell: The objectifying experience of symbolic violence. In B. A. LeFrançois,
R. Menzies, & G. Reaume (Eds.), Mad matters: A critical reader in Canadian Mad Studies
(pp. 105-121). Toronto: Canadian Scholars’ Press Inc.
LeFrançois, B.A., Menzies, R., & Reaume, G. (Eds.) (2013). Mad matters: A critical reader in
Canadian Mad Studies. Toronto: Canadian Scholars’ Press Inc.
Liegghio, M. (2013). A denial of being: Psychiatrization as epistemic violence. In B. A. LeFrançois,
R. Menzies, & G. Reaume (Eds.), Mad matters: A critical reader in Canadian Mad Studies
(pp. 122-129). Toronto: Canadian Scholars’ Press Inc.
Morris, A. (2017). W. E. B. Du Bois at the center: From science, civil rights movement, to Black Lives
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Penney, D., & Prescott, L. (2016). The co-optation of survivor knowledge: The danger of substituted
values and voice. In J. Russo & A. Sweeney (Eds.), Searching for a rose garden: Challenging
psychiatry, fostering Mad Studies. Monmouth, UK: PCCS Books.
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Sen, D., & Sexton, A. (2016). More voice, less ventriloquism: Building a mental health recovery
archive. In J. Russo & A. Sweeney (Eds.), Searching for a rose garden: Challenging
psychiatry, fostering Mad Studies. Monmouth, UK: PCCS Books.
Starkman, M. (2013). The movement. In B. A. LeFrançois, R. Menzies, & G. Reaume (Eds.), Mad
matters: A critical reader in Canadian Mad Studies (pp. 27-37). Toronto: Canadian Scholars’
Press Inc.
Taylor, V. (2000). Emotions and identity in women’s self-help movements. In S. Stryker, T. J.
Owens, & R. W. White (Eds.), Self, identity, and social movements (pp. 271-300).
Minneapolis: University of Minnesota Press.
Voronka, J. (2017). Turning Mad knowledge into affective labor: The case of the peer support
worker. American Quarterly, 69(2), 333-338.
West-Newman, C. L. (2004). Anger in legacies of empire: Indigenous peoples and settler states.
European Journal of Social Theory, 7(2), 189–208.
Acknowledgements:
I wish to thank Hannah, her mom and her grandparents for their love, Tom for
showing me the way, Lucy, Jiji and the anonymous reviewers for their wise guidance, and Luciano,
Ann and Steve for always pushing me further. I also wish to acknowledge the passing away of Karl
Fontaine, a great poet and disobedient friend who inspired my commitments.
Competing Interests:
none.
Address for Correspondence:
mathieubcd@gmail.com
Publication Date:
July 15, 2019
