FEMINIST ACTIVISM AND THE HEALTH INDUSTRIES WSDB 398 GA - May 6-10, 2019 - Simone de Beauvoir SUMMER Institute

 
FEMINIST ACTIVISM AND THE HEALTH INDUSTRIES WSDB 398 GA - May 6-10, 2019 - Simone de Beauvoir SUMMER Institute
FEMINIST ACTIVISM
            AND THE HEALTH INDUSTRIES
                           WSDB 398 GA

May 6-10, 2019

Simone de Beauvoir
SUMMER Institute
Simone de Beauvoir SUMMER Institute

                       SPECIAL THANKS

The 2019 Simone de Beauvoir SUMMER Institute would not be possible if it was not for
the generous artistic, administrative and financial support of our sponsors. We are
extremely grateful to Concordia’s Faculty of Arts and Science, the Simone de
Beauvoir Institute, as well as the Réseau québécois en études féministes.

                                Our thanks to Rachel Thomas

                                Artwork associated to the 2019 Simone de Beauvoir
                                SUMMER Institute has been graciously offered by
                                Rachel Thomas. Rachel is a Ph.D. candidate in
                                Interdisciplinary Humanities at Concordia University.
                                Her current body of research looks at the social
                                implications of polycystic ovarian syndrome on women
                                and synthesizes data findings through research-
                                creation. In particular, she is fascinated by the notion
                                of the ‘monstrous’ female body and how its
                                characteristics have been established by Western
                                social and medical norms. Her design (see artwork,
                                left) is unlike her usual artwork but was meant to clearly
                                show feminist activism working against an all-too-
                                present and powerful “health” industry.

                                          2
Organization Committee

              Geneviève Rail (Concordia University)
              Rachel Thomas (Concordia University)

We appreciate the work done by Linda Bowes and Marlihan Lopez
who helped with the administrative and communication aspects of the
           2019 Simone de Beauvoir SUMMER Institute

            And a Big “Thank You” to Our Volunteers!

   Location of the SUMMER Institute

               Subway (Guy-Concordia)
        1      John Molson Building (MB)
               1450 Guy street
               Montreal, Québec
Simone de Beauvoir SUMMER Institute
              2019 Program

MONDAY, May 6th

8:30am-11am                                                                                                    MB 3.231
                                  REGISTRATION OF SUMMER INSTITUTE PARTICIPANTS
                                (PARTICIPANTS NOT REGISTERED FOR COURSE CREDITS)

9am-10:30am                                                                                                    MB 3.270
                                          MANDATORY ORIENTATION SESSION
                                    FOR UNDERGRADUATE AND GRADUATE STUDENTS
                                          REGISTERED FOR COURSE CREDITS

10:30am-11am                                                                                                   MB 3.245
                                                          Health Break

Session  1                                                                                                     MB 3.270
Monday (11am-12pm)                                                                                        Opening Keynote

                                                 MESSING, Karen (UQAM)
                 “The second body in the workplace: How can we act to reconcile equality and women’s health”

12pm-1pm
                                                          Lunch Break

Session  2                                                                                                     MB 3.270
Monday (1pm-2:30pm)                                                                                                 Panel

Panelists:

WINT, Shirlette (Clinical social worker, psychotherapist, researcher and cultural consultant)
“The body has agency: Taking back that which was lost or never realized”

MILAKU, Hirut (Hirut, Third Eye Collective)
“Unpacking emergency response from 2017:
What were the many barriers faced by infants, pregnant and lactating Black asylum seekers in Quebec?”

                                                                4
MONDAY, May 6th

2:30pm-3pm                                                                                                      MB 3.245
                                                           Health Break

Session  3                                                                                                      MB 3.270
Monday (3pm-5pm)                                                                                Abby Lippman Memorial Session

Panelists:

TAILLEFER, Anne (Independent Researcher, Montreal)
“‘We are ordered to sell them⎯you do as you’re told’: Vaccination, women in healthcare, and medico-pharmaceutical coercion”

RAIL, Geneviève (Concordia University)
“The vaccine industry, the construction of ‘at-risk’ girls, and the manufacturing of mothers’ consent”

RIVA, Catherine (Investigative Journalist, Switzerland)
“Investigating and mapping ghost management at work: The case of HPV vaccines”

TUESDAY, May 7th

8:30am-9am                                                                                                      MB 3.231
                                   REGISTRATION OF SUMMER INSTITUTE PARTICIPANTS
                                 (PARTICIPANTS NOT REGISTERED FOR COURSE CREDITS)

Session  4                                                                                                      MB 3.270
Tuesday (9am-10:30am)                                                                                                   Panel

Panelists:

CYR, Céline (Activist and Trainer)
“Gaining Autonomy and Medication (GAM): Empowering medication users in ‘mental health’ and other stakeholders”

ASSAYAG, Lydya (Director, Réseau Québecois d’action pour la santé des femmes)
“The invisible straight jacket”

10:30am-11am                                                                                                    MB 3.245
                                                           Health Break

                                                                 5
TUESDAY, May 7th

Session  5                                                                                                    MB 3.270
Tuesday (11am-12pm)                                                                                            Presentation

Presenter:

DisAbled Women’s Network Canada

12pm-1pm
                                                        Lunch Break

Session  6                                                                                                    MB 3.270
Tuesday (1pm-2:30pm)                                                                                               Keynote

                                          PERRON, Amélie (University of Ottawa)
                    “What can an epistemology of ignorance contribute to our understanding of health care?”

2:30pm-3pm                                                                                                    MB 3.245
                                                        Health Break

Session  7                                                                                                    MB 3.270
Tuesday (3pm-5pm)                                                                                                    Panel

Panelists:

HEY, Maya (Concordia University)
“Fermentation and feminist arguments against healthisms”

O’BRIEN, Emilie (Art conservator, artist-researcher)
“Art, the body and the gift of gratitude”

                                                              6
WEDNESDAY, May 8th

8:30am-9am                                                                                                MB 3.231
                                    REGISTRATION OF SUMMER INSTITUTE PARTICIPANTS
                                  (PARTICIPANTS NOT REGISTERED FOR COURSE CREDITS)

Session   8                                                                                               MB 3.270
Wednesday (9am-10:30am)                                                                                          Panel

Panelists:

GOLDIN-STAHL, Darian (Concordia University)
“Skin, scan, and sign: Injecting subjectivities into the visual culture of medicine”

SIMS, Emily (Concordia University)
“Remembering: Labor, desire, fatigue”

10:30am-11am                                                                                              MB 3.245
                                                             Health Break

Session   9                                                                                               MB 3.270
Wednesday (11am-12pm)                                                                                      Presentation

Presenter:

MANNING, Kimberley (Concordia University)
“Supporting the health and well-being of trans youth: Clinical care in the context of political change”

12pm-1pm
                                                             Lunch Break

Session   10                                                                                              MB 3.270
Wednesday (1pm-2:30pm)                                                                                     Presentation

Presenter:

FISHMAN, JENNIFER (McGill University)
“Gendered and gendering pharmaceuticals”

                                                                   7
WEDNESDAY, May 8th

2:30pm-3pm                                                                                             MB 3.245
                                                          Health Break

Session  11                                                                                            MB 3.270
Wednesday (3pm-5pm)                                                                                          Panel

Panelists:

DOUDENKOVA, Victoria (Université de Montréal)
“Polycystic ovary syndrome as a pre-illness state: Medicalization and implications for autonomy”

RAIL, Geneviève (Concordia University)
“Artivism and the queering of cancer”

BEEMAN, Jennifer (Breast Cancer Action Quebec)
“Why does the environmental health movement bother so many people?”

             Please note the change of location
                    To the Hall Building
                 for Thursday May 9th only

THURSDAY, May 9th

8:30am-9am                                                                                         H553 Corridor
                                  REGISTRATION OF SUMMER INSTITUTE PARTICIPANTS
                                (PARTICIPANTS NOT REGISTERED FOR COURSE CREDITS)

Session  12                                                                                                H553
Thursday (9am-10:30am)                                                                                    Workshop

Workshop leader:

GUBERMAN, Nancy (UQAM)
“Environmental risk factors for diseases that the health industry rarely addresses”

                                                                 8
THURSDAY, May 9th

10:30am-11am                                                                                         H553 Corridor
                                                        Health Break

Session  13                                                                                                   H553
Thursday (11am-12pm)                                                                                      Presentation

Presenters:

BESSAÏH, Nesrine (La CORPS féministe)
LOMBARDI, Diana (La CORPS féministe)
“Putting experiential knowledge at the forefront”

12pm-1pm
                                                        Lunch Break

Session  14                                                                                                   H553
Thursday (1pm-2:30pm)                                                                                         Keynote

                             RICHARDSON / KINEWESQUAO, Catherine (Université de Montréal)
                             “Indigenous women’s responses to interpersonal and colonial violence”

2:30pm-3pm                                                                                           H553 Corridor
                                                        Health Break

3pm-4pm                                                                                                       H553
                                          MANDATORY INFORMATION SESSION
                                    FOR UNDERGRADUATE AND GRADUATE STUDENTS
                                          REGISTERED FOR COURSE CREDITS

                                                              9
FRIDAY, May 10th

8:30am-9am                                                                         MB 3.231
                                  REGISTRATION OF SUMMER INSTITUTE PARTICIPANTS
                                (PARTICIPANTS NOT REGISTERED FOR COURSE CREDITS)

Session  15                                                                        MB 3.270
Friday (9am-10:30am)                                                                      Panel

Panelists:

THOMAS, Rachel (Concordia University)
“Musings of a Fat Medusa: An interdisciplinary approach to obesity”

BEAUSOLEIL, Natalie (Memorial University of Newfoundland)
“Fatness, beauty and the arts: My life in health and body activism”

10:30am-11am                                                                       MB 3.245
                                                          Health Break

Session  16                                                                        MB 3.270
Friday (11am-12pm)                                                                  Presentation

Presenters:

MCPHAIL, Deborah (University of Manitoba)
MAZUR, Lindsey (University of Manitoba)
“Conceiving stigma? Fat women’s experiences of conception care”

12pm-1pm
                                                          Lunch Break

                                                               10
FRIDAY, May 10th

Session  17                                                                                                           MB 3.270
Friday (1pm-2:30pm)                                                                                                           Panel

Panelists:

JETTE, Shannon ((University of Maryland)
“Prenatal exercise and embodiment at the ‘postgenomic turn’: Reflections on a feminist transdisciplinary journey”

WARD, Pamela (Memorial University of Newfoundland)
“Bodies in practice: Exploring the experiences of public health nurses in a critical weight bias training program”

2:30pm-3pm                                                                                                            MB 3.245
                                                           Health Break

Session  18                                                                                                           MB 3.270
Friday (3pm-5pm)                                                                                                     Closing Keynote

                                               RICE, Carla (University of Guelph)
                                              FRIEDMAN, May (Ryerson University)
                                               LIND, Emma (Carleton University)

                      “A high risk body for whom? On risk, recognition and reclamation in reproductive care”

5pm-6pm                                                                                                       MB, 3rd Floor
                                                                                                           Deloitte Study Area
                                               RECEPTION FOR ALL STUDENTS,
                                                SPEAKERS AND PARTICIPANTS

                                                 *       *       *        *       *

                                                                11
Simone de Beauvoir SUMMER Institute
              2019 Abstracts
ASSAYAG, Lydya (Director, Réseau Québecois d’action pour la santé des femmes)

The invisible straight jacket

Hysteria rises her ugly head again. Just when we thought that it was something of the past, medicalization of women’s mental
health reaches record levels. Why and how do we face this challenge, again?

BEAUSOLEIL, Natalie (Memorial University of Newfoundland)

Fatness, beauty and the arts: My life in health and body activism

In this presentation I will reflect on my life-long activism in the field of body image, beauty and health. I will describe how my
teaching, research and activism have always been intertwined and how, lately, I have integrated the arts in my scholarship. I draw
and paint to see and understand the world and myself. For instance, in a series of self-portraits, I have used lines and colours to
depict my facial appearance and fat body in joyful acts, which are also fundamentally political. This presentation is mostly
autoethnographic but also includes a brief review of other artists’ works about fat bodies and issues of identity and community, in
the context of dominant regimes of truth and body fascism.

BEEMAN, Jennifer (Breast Cancer Action Quebec)

Why does the environmental health movement bother so many people?

Groups involved in environmental health face fierce criticism from many institutional actors in their fight to identify environmental
factors that cause diseases. Why should environmental factors related to diseases be a source of controversy? What are the critics
saying? What does this reveal about the dominant paradigms used to explain the causes of diseases and what we should be doing
to fight them? We will examine these questions particularly as it relates to breast cancer and cancers more generally in this
presentation.

BESSAÏH, Nesrine (La CORPS féministe)
LOMBARDI, Diana (La CORPS féministe)

Putting experiential knowledge at the forefront

Historically, the women’s health movement has been known to advocate for access to medical interventions that contribute to
improving women’s lives in terms of sexual and reproductive health (access to oral contraception, surgical abortion, etc.). It is with
this same perspective that the women’s health movement has held a staunch critical stand with regards to the health and
pharmaceutical industries. La CORPS féministe, a collective grounded in Québec’s feminist movement, holds this historical position
toward the “health industry.” We strive to co-construct knowledge by placing experiential, activist, and scientific knowledge at the
heart of our work. Our recent publication Corps accord: Guide de sexualité positive, an adaptation of Our Bodies Ourselves to
Quebec’s realities, brings together narratives from people who identify as women, longstanding demands from advocacy groups
as well as feminist research in health and social sciences. During this presentation, we will highlight our approach and process in
the making of this book and explain how we have used popular education practices and kept a pragmatic approach to medical
procedures and devices. We will also present our work to come to develop our next publication, which will be on perinatal period.
We will explain what new challenges we are facing and, in an approach of knowledge co-construction, will invite the audience to
open new perspectives and suggest solutions.

                                                                 12
CYR, Céline (Activist and Trainer)

Gaining Autonomy and Medication (GAM): Empowering medication users in ‘mental health’ and other stakeholders

GAM is an approach developed in Quebec by medication users and workers from the alternative mental health community
movement. At its core, GAM is about subjective quality of life. The different facets of one’s life are examined in order to assess the
impact of medication on one’s self. GAM aims to give power to medication users so they can make choices, negotiate their
treatment, have access to alternatives, and their rights respected such as free and informed consent. GAM is also practiced in
Ontario, France, Spain and Brazil. The objectives of this workshop will be to learn firstly about the GAM philosophy and practices.
This will be followed by a discussion about empowering people (users and workers), organisations and society at large, in relation
to ‘mental health’* medication and the increasing medicalization of people’s suffering and oppression. * Mental health is put in
quotation marks so we don’t forget to question ourselves: Are people suffering from so-called mental illnesses or are they simply
exhibiting normal reactions to difficult lives?

DOUDENKOVA, Victoria (Université de Montréal)

Polycystic ovary syndrome as a pre-illness state: Medicalization and implications for autonomy

Polycystic ovary syndrome (PCOS) is a widespread endocrine disorder that affects 10% of women of childbearing age and that
has a significant impact on their quality of life. Although the syndrome is primarily known because of its effects on fertility, it has
been proposed as a paradigm for pre-hypertension, pre-diabetes and pre-obesity. PCOS-affected women are more prone to
cardiovascular disease, hormone-related cancers and over 50% will be pre-diabetic or diabetic by age 40. These women tend to
be overweight, and nearly half of them are obese. According to Collin (2016), “semi-pathological pre-illness at-risk states” are
prone to medicalization for prevention purposes, because of the blurring of boundaries between what is considered being a normal
and a pathological state. PCOS as a pre-illness state falls in this category. Women are therefore at a higher risk of medicalization,
which does not necessarily represent the best way to help them achieve better health outcomes. This leads to the internalization
of a medicalized view of body and life, and to a wider use of drugs in the never-ending fight against chronic disease. It seems thus
necessary to address ways in which women’s autonomy can be restricted within those dynamics, often constructed, self-justified
and self-powered by dominant interests. In this context, other valuable ways to deal with PCOS—or even reverse it—bear the risk
to be overlooked. Instead of being used as an opportunity for medicalization, PCOS could serve as a gateway to nuance our
understanding of health and chronic disease, thus creating new opportunities that have the potential to foster women’s health and
autonomy.

FISHMAN, Jennifer, (McGill University)

Gendered and gendering pharmaceuticals

This session will describe and discuss how “gender” is both an input and output of pharmaceutical drug development, marketing,
prescription, and consumption. Using the exemplar cases of Viagra and hormone replacement therapy, I will examine how
biomedical constructs of sex and gender shape how and what drugs are available, how they are marketed, and how they are
consumed. We will conclude with spending time considering modes of interrogation and disruption of this health industry’s role in
the shaping of sex, gender, and sexuality.

GOLDIN-STAHL, Darian (Concordia University)

Skin, scan, and sign: Injecting subjectivities into the visual culture of medicine

The history of medicine can be understood by its images: from the drawn, engraved, or etched representations of the body created
by collaborating physicians and printmakers, to the extraordinary scans produced from penetrating waves of magnetic resonance.
These bodily visualizations teach us not only about disease, but how cultures through time have answered the question, “What is
the meaning of illness?” This talk analyzes how contemporary women and queer artists are countering the traditional medical
model of illness by re-presenting medical scans and illustration through a feminist lens, and ultimately expand the visual culture of
medicine to include under- and misrepresented subjectivities.

                                                                 13
GUBERMAN, Nancy (UQAM, Breast Cancer Action Quebec)

Environmental risk factors for diseases that the health industry rarely addresses

While health professionals push healthy lifestyles and pharmaceutical companies have a pill for everything, environmental risks to
health are rarely discussed by the health industry. Do you know what’s hiding in your home, workplace or classroom that can have
negative effects on your health ? In this workshop, Breast Cancer Action Quebec will help you become a chemical detective to
seek out and reduce the toxic chemicals in your environment. We will also discuss the need for stronger regulation of these
chemicals and what you can do to make a change.

HEY, Maya (Concordia University)

Fermentation and feminist arguments against healthisms

Despite its history, fermentation is currently celebrated as a tactic to subvert the industrial food system. Unlike the
commercialization and mass production of food commodities, fermentation champions the do-it-yourself (DIY) ethos, the populist
spirit, and the handmade care that goes into small-scale production. Coupled as both a food intervention and a health intervention,
fermentation reinforces the link between “eating well” and “gut health,” as voiced by medical professionals and food influencers
who expound upon ferments’ bioavailable nutrients and improved digestibility. By reducing ferments to a function and an
imperative, fermentation hails the neoliberal subject to take matters of food literally back into one’s hands and reorient agency back
into the human body. However, the mandate to eat raw, live, probiotic foods requires time, know-how, and material resources that
are not accessible to all who eat. This framing of fermentation fails to account for the multiplicity of health needs, ignoring the
structural barriers to food/health access. Ideologically, DIY fermenters situate their practice as a way to disrupt normative food
practices (buying) with making (their own); in so doing, they conflate the poor choices of purchasing with the poor health outcomes
of a food. Thus, by privileging self-reliance (e.g. “I don’t buy bread, I bake my own”), DIY fermentation practices enable a culinary
stance of moral superiority, which reinforce the healthist paradigm that it claims to subvert. Implied is the desire for “returning-to”
a kind of fermentation praxis from a pre-commercial food era, which itself assumes that there once was a time of “rightful” eating
from which we have erroneously departed. In the context of healthist regimes, fermentation is no exception to the sticky reaches
of singular food truths: eat this, not that, “because it’s good for you[r gut].” Backed by the legitimacy of science and testimony,
current narratives oversimplify fermentation into dualistic terms, which inform ideas of the body (such as its purity or boundedness)
that further equate health with control (that is, control over diet and/or control over microbial populations). Health is not a state; it
is enacted with more-than-human agencies, and it is perpetually (re)negotiated at every eating event. Microbial bodies and
microbial foods complicate dominant ideologies of health because they shift attention away from solutionist directives of eating
fermented products towards a process-oriented approach of living with, working with, and eating with microbes. Using a
combination of performativity and theories of embodiment, this presentation analyzes the dynamic and transformative aspects of
fermentation as a way to reimagine health as being co-constructed with other scales of life.

JETTE, Shannon (University of Maryland)

Prenatal exercise and embodiment at the ‘postgenomic turn’: Reflections on a feminist transdisciplinary journey

Within the life sciences, there has been a move away from genetic determinism towards an awareness of how the environment
(from cellular to social) can impact gene expression and health outcomes. Significantly, exercise scientists are looking to this
‘postgenomic turn’ to explore how prenatal physical activity and leisure might impact the fetal metabolic environment by altering
offspring gene expression and preventing future obesity. In this paper, we draw upon insights from feminist new materialist scholars
to explore how/if the entanglement of the social and material promised by the postgenomic turn is realized in prenatal exercise
interventions. After outlining how this is not the case, we reflect upon our attempt to promote a transdisciplinary dialogue that
facilitates a social justice ethos and non-reductionist version of maternal-fetal health and physical culture. Our transdisciplinary
journey contributes to the feminist physical cultural studies agenda of equity development in the realm of exercise and leisure.

MANNING, Kimberley (Concordia University)

Supporting the health and well-being of trans youth: Clinical care in the context of political change

                                                                  14
MCPHAIL, Deborah (University of Manitoba)
MAZUR, Lindsey (University of Manitoba)

Conceiving stigma? Fat women’s experiences of conception care

Increasingly, medical researchers, government policy, and the popular media have expressed concern regarding the risks
associated with “obese” women’s reproduction. Research is beginning to show that, as a result of these concerns, fat women are
routinely denied fertility and proper reproductive care. This denial is based in medical research that cites complications for both
the woman and her (potential) fetus, including miscarriage, prematurity, and autism. At the same time that health risks have been
emphasized by researchers, some scholars have instead focused on the stigma experienced by fat people, and have argued that
“obesity stigma,” too, has negative health effects relating to the high stress levels associated with discrimination. Researchers
have also found stigma within the healthcare setting, where preconceived notions about fatness on the part of healthcare workers
can lead to misdiagnosis and the denial of care. What is missing from such research, however, is an analysis of “obesity stigma”
within the fertility healthcare setting in particular. Larger women are considered “risks” to both themselves and their children and,
as a result, believed to be “bad mothers”; how does this belief impact the healthcare of obese women attempting to conceive? This
presentation will begin to address this question by outlining the findings of a qualitative study conducted in 3 cities in Canada, in
which the authors interviewed 59 fat-identified participants regarding their experiences of reproductive and fertility care. We
demonstrate how gendered discourses of mother-blame and fetal risk frame the experiences of fat women’s (potential) pregnancies
and birth almost fully and completely. Further, given that many participants’ experiences of discrimination of care worked to prevent
them from pursuing future pregnancies, we explore the potential that these actions on the part of healthcare professionals can be
construed as a new form of eugenics.

MESSING, Karen (UQAM)

The second body in the workplace: How can we act to reconcile equality and women’s health

The #metoo movement has made me aware that women often feel shame for being women. We need to combat that shame if we
are to be able to gain equality in the workplace while preserving our health. This problem is particularly acute for women holding
jobs requiring physical strength and endurance such as food servers, gardeners, cashiers and health care aides. I will describe
some lessons learned during our ergonomic interventions in these kinds of jobs, done in collaboration with union status of women
committees.

MELAKU, Hirut (Hirut, Third Eye Collective)

Unpacking emergency response from 2017:
What were the many barriers faced by infants, pregnant and lactating Black asylum seekers in Quebec?

Pregnancy and childbirth can end up being a site of trauma instead of power and spiritual connectedness. In telling stories of
pregnant Black asylum seekers, I will identify some of the systemic barriers to a mind, body, spirit connection when one is forced
to give birth under obstetrical violence. I’ll also be addressing infant feeding activities, and questioning if and how the actions of
health care professionals put infants at harm. The World Health Organization states that artificial feeding should not be introduced
unless it is acceptable, feasible, affordable, sustainable and safe (AFASS). And yet, most of the asylum seekers live in conditions
or context that are not AFASS...

O’BRIEN, Emilie (Art conservator, artist-researcher)

Art, the body and the gift of gratitude

Art and the art-object under capitalism and patriarchy have been removed as a core source of connection between mind and body,
and self and other. This workshop explores creativity as a natural right, one that links embodiment, community, ancestry,
sacredness and well-being; proposing a restoration of non-linear, creative modes of expression as a means to remembering and
awakening ourselves into a new paradigm of healing.

                                                                 15
PERRON, Amélie (University of Ottawa)

What can an epistemology of ignorance contribute to our understanding of health care?

Activism and social change initiatives are often predicated on calls to speak truth to power, that is, to speak openly and freely
against individuals or dispositifs that perpetuate oppressive and unethical practices and policies. Empowerment is commonly used
as a catch-all term meant to capture the shifts in power that occur when truths are disseminated without restraint and used to
rectify abusive processes and discourses. However this assumes that the knowledge needed to challenge power relationships is
available and can be used toward emancipation. In healthcare, such knowledge is typically assumed to come from scientific inquiry
meant to produce indisputable data and facts. Yet science itself can perpetuate epistemic privilege rather than epistemic agency
that is needed for empowerment. A postnormal reading of knowledge and scientific inquiry may accommodate insightful
discussions about the ‘unknown’―in other words, ignorance―as a useful starting point for critique and resistance to challenge
such a position. Ignorance here is understood as evidence of the confrontation between different forms of local knowledges
culminating with the domination of some forms over others. Speaking truth to power, then, requires the critical examination of the
current epistemic division of labour, the construction of particular subjectivities (that are valued or devalued), and the power
relationships that govern these configurations. I suggest that an epistemology of ignorance, which is heavily informed by feminist
scholarship, can afford a position of epistemic justice. In this view, ignorance is not construed as a void or as something preventing
intelligibility and the validity of other perspectives and understandings, but as something that can disallow the perpetuation of
epistemic privilege. An epistemology of ignorance explores a different form of critique for care recipients and care providers,
through the destabilization of epistemic certainties.

RAIL, Geneviève (Concordia University)

Artivism and the queering of cancer

In this presentation, I look at what knowledges actually inform cancer screening, diagnosis, surgery and treatment decision-making
by breast or gynecological cancer patients who are members of a sexual minority. This poststructuralist-informed study aimed to
document and analyze the complex intersectional relationships between gender/sexuality, cancer experiences, and knowledge
access, sharing and mobilization. Here, I focus on the results of over 100 interviews carried out with a diverse sample of queer,
lesbian or bisexual women (QLB) and trans (T) persons from Canada diagnosed and treated for breast or gynecological cancer.
The results speak to the ways in which fields of knowledge are inflected by dominant discourses on biomedicine, risk, neoliberalism
and stereotypical rhetoric of “women's health” and “lesbian health.” Instead of stories focusing on “curing” cancer (à la Pink
Ribbons), our participants’ stories rather constitute narrative practices that contribute to “queering cancer.” Such stories trouble
norms (of sex, gender, sexuality, cancer experience) and transpire the subjectivity of our participants. A number of participants
took part in a digital story workshop and produced short videos. A few of these videos are presented to illustrate the work done
and to open the discussion on the issue of activism and the co-creation of new knowledge in cancer and cancer care.

RAIL, Geneviève (Concordia University)

The vaccine industry, the construction of ‘at-risk’ girls, and the manufacturing of mothers’ consent

While human papillomavirus (HPV) and HPV vaccination (HPVV) campaigns have stirred heated debates on safety, effectiveness,
cost, and ethics, public HPVV campaigns are present in all Canadian provinces. This presentation looks at the deployment of
HPVV discourses and their impact on Canadian girls, parents, nurses, and physicians. The study includes conversations (N=139)
with participants from 4 provinces and diverse sociocultural locations. I first chart how girls, parents and health professionals make
sense of, and discursively construct HPVV. Second, I examine the interview transcripts for traces of discourses recited by youth
and adults when discussing HPVV. I am interested in how they appropriate and/or resist such discourses as well as how they
constitute themselves as subjects of/to such discourses. The results speak to the discursive construction of mothers as responsible
biocitizens who act upon their daughter’s risk, and of health professionals as biopolitical agents of the State and the pharmaceutical
industry who spread fear of HPV and manufacture consent for HPVV among girls and mothers. We reflect on the use of HPVV
within larger corporate schemes to expand markets in the name of cancer prevention. We conclude by asking whether the health
of the public is advanced when HPVV discourses and practices produce at-risk bodies and when cancer prevention is
instrumentalised in the pharmaceuticalisation of public health.

                                                                 16
RICE, Carla (University of Guelph)
FRIEDMAN, May (Ryerson University)
LIND, Emma (Carleton University)

A high risk body for whom? On risk, recognition and reclamation in reproductive care

This presentation seeks to explore issues of weight stigma and fertility, reproduction, pregnancy and parenting. We engage with
Reproducing Stigma, a Re•Vision-affiliated research project that used interview and video-making methods with women-identified
and trans people, as well as interviews with healthcare providers and policymakers. We consider the ways in which reproductive
risk is typically storied in healthcare and culture, and will screen six micro-documentaries made by project participants which
challenge us to story reproductive wellbeing differently. We examine three major themes—on risk, on recognition of weight and
other stigma, and on reclamation of bodies—that emerged as critical to these storytellers. We argue that just as clinicians strive to
practice evidence-based care we must also put into practice storied care—to believe, respect, and honour people’s stories of their
bodies as fundamental to achieving equity in reproductive healthcare.

RICHARDSON / KINEWESQUAO, Catherine (Université de Montréal)

Indigenous women’s responses to interpersonal and colonial violence

In this presentation, Catherine will discuss her approach to supporting Indigenous women who have experienced violence. She
will share her interactional framework, which provides a map for exploring context, situational details, violence as well as victim
responses and resistance. She frames the women’s actions in terms of seeking to restore safety and dignity. She will also discuss
how representations of this violence in popular culture, and in court settings, tend to blame women for the violence of men, and
create impunity for perpetrators.

RIVA, Catherine (Investigative Journalist, Switzerland)

Investigating and mapping ghost management at work: The case of HPV vaccines

We tested a hypothesis put forward by Marc-André Gagnon (Carleton University, Ottawa) that builds on the concept of ghost
management in science to develop a reflection on corporate capture and institutional corruption in the biopharmaceutical sector.
Gagnon postulates that because of the current business model, the activity of pharmaceutical firms is more oriented towards
producing influence on medical knowledge and social determinants of value, than towards producing innovative treatments. We
confirmed the validity of this approach by mapping the strategies and issues highlighted in our Re-Check long form investigation
on HPV vaccines. Our maps show that in Western countries, the striking success of these products embodies a new era of pharma-
marketing and ghost management. Before, during and after the regulatory process to approve the vaccine, an impressive scheme
linking communication, lobbying and dependencies is at work. The maps allow to identify key investments made by companies to
shape and influence the social and scientific debate, as well as habits, health programs and advocacy. Thanks to multidirectional
capture strategies, the ghost management’s strategy succeeded in neutralizing all those players who were supposed to curb the
pharmaceutical industry’s ambitions: regulatory authorities, public health bodies, medical journals, physicians and medical experts.
It also captured the media, civil society and legislative measures, even achieving to neutralize the alleged market competition. The
case of HPV vaccines is an impressive example of ghost management, demonstrating how narratives shaping medical knowledge
can be created and controlled in a way that favors corporate interests.

SIMS, Emily (Concordia University)

Remembering: Labor, desire, fatigue

Through the use of Visceral Methodology, the presentation at hand presents the ways in which I have attempted to reconcile the
physical, intellectual, and emotional labor required during the PhD application process. Often controversial self-care methods and
non-conventional income sources are explored using the theoretical framework of Risk Studies, found images, and song lyrics.
This work invites the reader/viewer/listener to imagine the myriad methods of survival taken up by individuals and communities
with limited financial resources, but unlimited academic and professional aspirations.

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TAILLEFER, Anne (Independent Researcher, Montreal)

"We are ordered to sell them⎯you do as you’re told":
Vaccination, women in healthcare, and medico-pharmaceutical coercion

The vaccine is a fascinating social object. It involves issues of security, anger, fear, power struggles, and generates epistemic
injustices. Vaccination is part of a patriarchal, colonial and political project. These dimensions will be exemplified by a study that
reveals aspects of the experience of women in health care who struggle to come to terms with what they witness in the field, and
the coercion they undergo. It highlights how their expertise on the subject of vaccination is relegated to forbidden knowledge and
how they experience this silencing imposed by medical and pharmaceutical establishments.

THOMAS, Rachel (Concordia University)

Musings of a Fat Medusa: An interdisciplinary approach to obesity

This presentation will explore a relatively new interdisciplinary methodology, graphic medicine, in the dissemination of new
information in the medical and social discourses around obesity. Graphic medicine is the intersection of comic art and such
discourses which allows for academic research to be presented in a way that is accessible to other backgrounds and communities.
Musings of a Fat Medusa is a graphic novel that chronicles a journey from the ‘morbidly obese’ body into the ‘fit and healthy’ body,
and all the medical and social issues in said spectrum. At its core, it negotiates the experience of fatness, and how Western culture
seeks to frame this body type (both in positive and negative lights). Further it discusses the liminal space in the process of
relinquishing fatness in favour of medically sanctioned ‘health’ and ‘fitness.’ The presentation will explore these ideas in a few
selected chapters of the novel, using the illustrated pages as examples.

WARD, Pamela (Memorial University of Newfoundland)

Bodies in practice: Exploring the experiences of public health nurses in a critical weight bias training program

Newfoundland and Labrador (NL) has one of the highest provincial rates of obesity in Canada and hence has been broadly labelled
as a ‘problem’ population. Recently the Government of NL has initiated a ‘health in all policies’ approach with one goal being a 5%
reduction of obesity in NL by 2025. While the government is seeking strategies to support the prevention and treatment of obesity
in the province, a number of researchers and health practitioners are warning of the dangers of a weight-centred approach. Such
an approach, we contend, draws largely on dominant obesity discourses that construct obesity as disease and fat people as lazy,
irresponsible and in need of treatment. Such approaches have been widely reported to lead to health care that is stigmatizing and
harmful. Weight bias has been shown to negatively impact psychological well-being of individuals, resulting in negative health
outcomes, behaviours such as avoidance of physical activity, emotional eating or disordered eating, and mortality. More recent
literature suggests that moving away from a weight-centred focus in public health and inserting alternative discourses of health
and the body into practice, have the potential to improve patient health outcomes. In this presentation, I will provide an overview
of a feminist study that was conducted with public health nurses in one health authority in NL. With the support of a “health not
weight” nursing implementation working group, we utilized a mixed-methods design to explore the experience of public health
nurses in a critical weight bias initiative. This initiative, consisting of an online module and a face-to-face workshop, challenges
dominant health and obesity discourses and presents an alternative approach to care for people in all bodies, with a focus on
health, not weight. Results demonstrated a positive response to the initiative. While nurses evaluated the intervention components
positively, interviews highlighted the complex ways in which the nurses navigated the dominant and resistive discourses while
reflecting on their own body positioning in practice and in the work environment.

WINT, Shirlette (Clinical social worker, psychotherapist, researcher and cultural consultant)
The body has agency: Taking back that which was lost or never realized

This presentation will illustrate how emotional wounds were healed through workshops, individual consultations along with art and
cultural activities in community, private and public sectors. By creating opportunities for individuals, families and groups to
participate in cultural activities; collective catharsis was achieved allowing the physical body to become receptive to strengthening
of resiliency and creating space for resourcefulness.

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Simone de Beauvoir SUMMER Institute
          2019 Mini-Biographies
ASSAYAG, Lydya, is a lawyer, mediator, researcher, teacher, and also a musician. Member of both the New York and Quebec
Bars, she is a human rights expert and a long-time activist in protecting and promoting the rights of minorities, children and women.
Ms. Assayag spearheaded the “Duplessis Orphans” case while working at the Quebec Ombudsman’s Office. She has also worked
for the Human Rights Commissions of Quebec, New York and Mexico. In Rwanda, she was instrumental in implementing the
indigenous genocide trials. She is the laureate of the prestigious 2010 “Espace Femme Arabe” trophy and sat on the President’s
chair for the “Conseil des Montréalaises” in 2012-2014. Ms. Assayag also taught at the Quebec Bar school. She is currently Director
of the Réseau Québecois d’action pour la santé des femmes, advocating for a comprehensive and feminist approach to health.
Her motto: to be the voice of the voiceless. Email: lydya.assayag@rqasf.qc.ca

BEAUSOLEIL, Natalie, is a feminist critical obesity sociologist, artist and Professor of Social Sciences and Health in the
Division of Community Health and Humanities in the Faculty of Medicine at Memorial University of Newfoundland. Her scholarship
and activism focus on the social production, representation and experiences of the body and health, as well as the arts and social
justice in medical education and medical humanities. She has published several peer-reviewed art pieces, articles and book
chapters in Canadian and international publications. Email: nbeausol@mun.ca

BEEMAN, Jennifer, is a sociologist. She has worked for many years with or in social movements, particularly with women’s
groups on women’s rights at work, including pay equity, work-family balance, women’s access to predominantly male trades, and
women in construction. Five years ago, she returned to her first interest in the women’s movement: women’s health and
environmental health. At Action cancer du sein du Québec, in addition to acting as director, she has developed several files,
including breast cancer and immigrant and racialized women, overdiagnosis and overtreatment of breast cancer, an environmental
health and toxic substances program for public high schools and the reform of the Canadian Environmental Protection Act, among
others. Email: jennifer.beeman@acsqc.ca

BESSAÏH, Nesrine, is an anthropologist. Her Ph.D. research project (University of Ottawa) brings together anthropology,
gender studies and translation studies. She is President of the Fédération du Québec pour le planning des naissances. She is also
the co-founder and coordinator of an association that led the translation and adaptation of Our Bodies Ourselves in French in
Quebec: la CORPS féministe (la collective pour un ouvrage de référence participatif sur la santé féministe). Email:
nesrine.bessaih@mail.mcgill.ca

CYR, Céline, is an activist and trainer in the « mental health » alternative and feminist movements. She is passionate about
developing alternative practices such as Gaining Autonomy and Medication (GAM), Intentional Peer Support (IPS), and
intersectional feminist intervention. She is currently working on a research/training on the intersecting systems of oppression of
agism and sanism with the Université TÉLUQ and the rights group Action Autonomie à Montréal. She has a Master’s degree in
social work and has several years of experience in intervention. She works in Brazil on implementing GAM and other alternative
approaches. Email: celine_cyr@sympatico.ca

Disabled Women’s Network Canada has celebrated 30 years of service to Canadian women with disabilities and Deaf
women in 2015. Through over 30 years of collaboration and hard work, DAWN has the unique expertise and experience to support
and develop the leadership of women and girls with disabilities. Under the leadership of our President and our Board, and with the
energy and vision of our National Executive Director and Staff, all of whom are women with disabilities, DAWN Canada continues
to represent the voice of women with disabilities and Deaf women, both nationally and internationally. We advocate for equity as
a means of achieving equality for all women by making sure that women and girls with disabilities have everything they need to
reach their goals. We promote approaches that recognize, accommodate and celebrate differences. Grounded in the lived
experiences of women with disabilities and Deaf women, and using an evidence-based approach, DAWN Canada works to create
change at a systemic level in order to directly improve the quality of life for women with disabilities. We amplify the voice of women
with disabilities and Deaf women by ensuring that they are represented at decision-making tables in the areas that matter most,
including violence prevention, health equity, and access to justice. We work to increase the capacity of women with disabilities and
Deaf women in their communities to support their leadership in articulating their needs.

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DOUDENKOVA, Victoria, is dedicated to raise awareness around women’s health issues through her work as a Ph.D.
candidate in bioethics at the Université de Montréal. Her research project explores autonomy-related challenges faced by women
affected by Polycystic Ovary Syndrome (PCOS). She is also Vice-President of the non-profit organization Vivre100Fibromes based
in Montreal, and plays an active role in fostering women’s empowerment in vulnerable communities. Email:
victoriadoudenkova@gmail.com

FISHMAN, Jennifer, is Associate Professor in McGill University’s Biomedical Ethics Unit and Department of the Social
Studies of Medicine, and an Associate Member of the Sociology Department and the Institute for Health and Social Policy.
She holds a Ph.D. in Sociology from the University of California, San Francisco. As a sociologist of science, technology, and
medicine, she uses empirical qualitative methods to describe and analyze the emergence of new medical knowledge and
technologies, from the early stages of development to their integration into clinical practice and dissemination to clinicians
and patients. Often referred to as “empirical ethics,” she analyzes the oft unexamined and presumptive ethics and values
within new scientific enterprises and how these impact research trajectories, technological diffusion and commercialization,
and ultimately patients/consumers. She has studied new pharmaceutical drug development and advertising, anti -aging
science and medicine, direct-to-consumer genetic risk susceptibility testing, end-of-life medical decisions, prenatal genetic
carrier testing panels, and the promise of personalized genomic medicine. Her new project will examine the early translation
of epigenetic research and knowledge into public health and media messages to pr ospective parents. Email:
jennifer.fishman@mcgill.ca

FRIEDMAN, May, works at Ryerson University as a faculty member in the School of Social Work and in the Ryerson/York
graduate program in Communication and Culture. May’s research looks at unstable identities, including bodies that do not conform
to traditional racial and national or aesthetic lines. Most recently, much of May’s research has focused on intersectional approaches
to fat studies considering the multiple and fluid experiences of both fat oppression and fat activism. Email:
may.friedman@ryerson.ca

GOLDIN-STAHL, Darian, is an American printmaker and bookmaker based in Montreal, Canada. She is currently
enrolled in the PhD Humanities program at Concordia University in Montreal. Darian is also the current Artist in Residence
for Synapsis: A Health Humanities Journal out of Columbia University. Her thesis project, “Lived Scans: Aesthetic
Phenomenological Encounters with MRI Scans and the Patient Experience,” was awarded the prestigious Vanier Canadian
Graduate Scholarship. Darian employs research-creation methods to investigate how a haptic engagement with a person’s
own medical scans can restore a sense of agency over the medicalized body, and in turn, change the way a doctor views
her patient from a representative object into irreducible subject. Darian’s artwork is situated at the intersection of patient
narrative, biomedical imaging technology, and multi-sensory printmaking practices. She employs visual metaphors to better
represent what it is like to live with chronic illness on a daily basis. To this en d, she combines signifiers of illness (such as
MRI scans and hospital gowns) with sound, light, aromatic oils, and skin impressions to create immersive psychological
snapshots of the patient’s mind while she is being scanned in the hospital. This research -creation project is a collaborative
cycle of informing and reconstructing illness identity, with the aim of advancing the field of medical humanities and fosteri ng
a more empathetic relationship between medical practitioners and their patients. Darian holds an MFA in Printmaking from
the University of Alberta and a BFA in Printmaking from Indiana University Bloomington. She has received grants from many
organizations to fund the production of her artwork, including the Edmonton Arts Council, Alberta Foundat ion for the Arts,
Hexagram (Montreal), and the Renata and Michal Hornstein Foundation. Before beginning her PhD, Darian completed an
eight-month Scholarship Residency at Malaspina Printmakers in Vancouver. She has exhibited her work in many galleries
and conference venues around the world, including Impact 10 (Santander, Spain), Martha Street Studio (Winnipeg), Kelowna
Art Gallery, Kimura Art Gallery (Anchorage, Alaska), Art Gallery of St. Albert (Alberta), and the Ottawa School of Art. Most
recently, Darian and her collaborating partner and sister, Devan Stahl, published an edited volume on their practice entitled,
“Imaging and Imagining Illness: Becoming Whole in a Broken Body,” through Wipf and Stock Press. Email:
dariangoldinstahl@gmail.com

GUBERMAN, Nancy, is a retired professor of Social Work (community organization) at UQAM and currently president of
Breast Cancer Action Quebec, the only independent breast cancer organization in Canada whose mission is to work for the
prevention of breast cancer and the elimination of environmental toxicants linked to the disease. We take on the tough issues
ignored by mainstream organizations. Email: guberman.nancy@uqam.ca

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HEY, Maya, is a Vanier scholar and Ph.D. candidate in Communication Studies at Concordia University. She is also a Public
Scholar with the School of Graduate Studies. She completed her Master’s in Food Culture and Communication at the University
of Gastronomic Sciences and holds a B.S. in Nutrition, Dietetics, and Food Administration. Her doctoral research examines
fermentation and feminist theory, particularly attending to questions of power, performativity, and material practice. Email:
heymayahey@gmail.com

JETTE, Shannon (Ph.D. University of British Columbia, 2009), is an Associate Professor in the Department of Kinesiology and
Physical Cultural Studies at the University of Maryland, and her work focuses on social and cultural aspects of health, physical
activity, gender and the body. Dr. Jette is interested in socio-cultural aspects of health, physical activity and the (female) body, with
a focus on: the production of biomedical knowledge about health and physical activity (i.e., how is it that certain ideas come to be
accepted as ‘truth’); how this knowledge has been (and is) put to use in the operation of power in differing socio-historical contexts;
representations of health and (un)healthy bodies in various cultural contexts; and the subject positions individuals take up in relation
to various health-related messages. Her current research focuses upon how various groups of women that are considered ‘at risk’
in the context of the obesity epidemic understand dominant messages about health, as well as how they experience health, physical
activity and weight gain in their everyday lives. The goal is to provide insight into the complex intersection of race, gender, sexuality
and social class in shaping women’s health in order to better inform social policy and programming that may otherwise be
insensitive to social location and cultural nuance. Overall, Dr. Jette’s research agenda is linked by a consistent focus on the multiple
ways that active bodies are articulated into the operation of social power, with the aim of illuminating power inequalities and giving
voice to subjugated knowledge(s). She uses a range of qualitative research methodologies (including media and discourse
analysis, in-depth interviews, ethnographic techniques) and social theory to critically examine the power relations at play in the
production, dissemination and interpretation of knowledge in the disciplines of kinesiology and public health. Dr. Jette has been
successful at obtaining national competitive funding at the Masters’, doctoral and postdoctoral level, and is currently a co-
investigator on a federally-funded operating grant. She has published in such journals as the Sociology of Sport Journal, Qualitative
Health Research, Health, Journal of Aging Studies and the Canadian Bulletin of Medical History. Email: jette@umd.edu

LIND, Emma, holds an Honours B.A. from the University of Toronto’s Women and Gender Studies Institute and a M.A. in
Gender, Feminist and Women’s Studies from York University. She is a doctoral candidate in the Institute for Comparative Study in
Literature Art and Culture (ICSLAC) at Carleton University. Her research examines the relationships between identity, materiality,
power, and knowledge production in interdisciplinary contexts. She is currently working on her doctoral dissertation with a focus
on the Canadian arts and crafts movement. Email: emilyruthmusgrovelind@gmail.com

LOMBARDI, Diana, is a long-time feminist activist who has been working in the Montreal community sector for close to 20
years. She is currently a student in the Community Economic Development graduate program in the School of Community and
Public Affairs at Concordia University. As co-founder of “la CORPS féministe,” a collective that led the translation and adaptation
of Our Bodies, Ourselves in French in Québec, she is interested in feminist action, popular education, and holistic approaches to
women’s health. Email: animatricedl@gmail.com

MCPHAIL, Deborah, is an Assistant Professor in Community Health Sciences, nil-appointed in Environment and Geography,
and adjunct in Disability Studies at the University of Manitoba. A critical health scholar who studies the social aspects of “obesity,”
Dr. McPhail’s interdisciplinary work has been published in such journals as Health and Place, and Social Science and Medicine.
Dr. McPhail obtained a Ph.D. in Women’s Studies from York University in 2010. Her doctoral dissertation, a feminist history of
obesity discourse in twentieth-century Canada, is in press with the University of Toronto Press. Dr. McPhail’s current work focuses
on the interplay among obesity discourse, social inequalities and cis women’s, trans-men’s, and trans-masculine people’s
reproductive health, with particular emphases on issues of health equity and healthcare access. Other areas of interest include:
food justice and food politics; critical theories of health and the body; feminist and qualitative research methods; gender studies;
anti-racist and postcolonial studies; theories of class distinction and structural oppression; globalization and health inequity;
intersectional experiences of health and illness. Email: Deborah.McPhail@umanitoba.ca

MANNING, Kimberley, specializes in Chinese politics, women and politics, and the rights of transgender children and youth.
She analyzes family ties and politics through the lens of feminist theory. Dr. Manning is currently participating on two SSHRC-
funded projects: one working with parent advocates of transgender youth and a second study with transgender youth in Quebec.
She is also the faculty lead on C-FAR (Critical Feminist Activism and Research), a Faculty of Arts and Science-funded initiative to
improve equity and diversity at Concordia through social action research projects. Dr. Manning is an Associate Professor of Political
Science and Principal of Concordia University’s Simone de Beauvoir Institute. Email: Kimberley.manning@concordia.ca

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