Community-driven exploration of girls’ mental health leads to new support
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Partnering with community organizations is essential for equity-informed population health researchers, and York University Faculty of Health professors Cheryl van Daalen-Smith and Marina Morrow have embarked on a community-driven inquiry exploring girls’ and young women’s mental health, leading to new local supports.
Partnering with Girls Incorporated of York Region and the Canadian Mental Health Association of York Region, the researchers and York Research Assistant Ariella Markus (master of arts, interdisciplinary studies) pursued a girl-centred exploration of girls’ own views regarding the issues they face.
In September, a community knowledge mobilization launch was held in Newmarket, Ont., where an open-access research monograph was shared and discussed with representatives from community organizations, policy developers, girl-serving organizations and government. As a result, a new and community-driven girls’ mental health network initiative, led by community partners, is in the early stages of development in York Region.
The community-based study strove to: explore girls’ and young women’s views regarding the current state of girls’ mental health; understand the issues impacting mental health; understand what they deem as helpful models of mental health support; and hear and document their views about what needs to change.
“The research team heard that girls’ lives are full of worry, with girls routinely hearing negative comments, and that the pervasiveness of judgement and pressure leaves girls simultaneously feeling too much and not enough,” says van Daalen-Smith.
While the participants varied in age, experience, cultural background and other aspects, the top three pressing issues identified in the project are: anxiety and depression related to judgement from others/society; social expectations and the constant comparison to others; and learned hatred of their own bodies and wishing they were (like) someone else.
“All of this pressure, judgment and fear gave way to clouded thinking, with the young women clearly telling us that their anxiety ‘was a symptom of gender-based devaluation and social pressure’ and not so-called ‘poor coping skills,’” says Morrow.
The inquiry, say researchers, confirmed the continuing trend that how girls are viewed, referred to and treated determines their mental health and well-being. It was also determined that the erosion of mental health is linked to a breach of their rights – something Girls Incorporated has been working to address over the past three decades.
The team also consulted with girl-serving professionals, including social workers, peer support workers/specialists, gender-affirming care workers, youth mental health workers, nurse practitioners and more. From listening to girls, young women and girl-serving professionals, the researchers put forth recommendations to consider when seeking to support girls’ and young women’s mental health.
Some of these recommendations are:
Believe, affirm and validate girls’ appraisals of their lives and experiences. They want to be believed.
Girls are afraid that others will find out they went to talk with someone. Help them find you in ways that feel safe.
Don’t focus on the symptom nor infuse girls with psychiatric labels through which to view themselves – language matters.
Girls want comfortable, girl-friendly spaces to be heard, affirmed, valued and believed – not fixed.
Empower girls to actively remove self-deprecating notions of themselves and other girls through individual and group activities that protect girls’ social vulnerabilities.
Remind girls about their right to authenticity, safety, bold expression, achievement, body appreciation, confidence and future self-reliance. Help them achieve these rights. Speak out when girls’ rights are breached.
The full list of recommendations can be found in the report.
York recognizes International Day for Persons with Disabilities
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La version française suit la version anglaise.
Dec. 3 is the International Day for Persons with Disabilities. Recognition of this day reminds us of our responsibility to better understand disabilities and to promote the rights and well-being of persons with disabilities in our communities.
This year’s theme for the day, as set out by the United Nations (UN), is “United in action to rescue and achieve the SDGs (Sustainable Development Goals) for, with and by persons with disabilities.” Achieving many of the SDG targets is in serious peril, threatened by inaction and multiple global crises. Preliminary findings from the forthcoming UN Disability and Development Report 2023 indicate that the world is even more at risk of not meeting several SDGs for persons with disabilities.
Persons with disabilities have historically been marginalized and have often been among those left furthest behind. All members of the York community are encouraged to develop their understanding of the situation of persons with disabilities in all aspects of political, social, economic and cultural life. It is also important to reflect on the experiences of persons with disability in all five pillars of the SDGs: People, Planet, Prosperity, Peace and Partnerships. For example, consider the intersection of gender and disability where women and girls with disabilities are acutely vulnerable, thus compounding the challenges and barriers they encounter.
York’s Centre for Human Rights, Equity and Inclusion’s (CHREI) REDDI (rights, equity, decolonizing, diversity and inclusion) Mini-Series is offering a workshop that promotes accessibility and proactive accommodations: “Challenging Notions of Ableism: Breaking Barriers to Social Inclusion.” This workshop examines the construction of disability and the pervasiveness of ableism, encouraging participants to think critically about what it means to be “able” and what an ableism-free future could look like. This session will draw on examples of both individual and systemic discrimination and exclusion and ask participants to construct responses to social exclusion. This session takes place Dec. 4, from 10 to 11:30 a.m. Register on YU Learn.
Thank you. Merci. Miigwech.
Alice Pitt Interim Vice-President Equity, People and Culture
York souligne la Journée internationale des personnes en situation de handicap
Le 3 décembre est la Journée internationale des personnes en situation de handicap. Cet événement rappelle notre responsabilité de mieux comprendre les handicaps et de promouvoir les droits et le bien-être des personnes en situation de handicap dans nos communautés.
Cette année, le thème de la journée, tel que défini par les Nations Unies, est « Unis dans l’action pour sauver et réaliser les objectifs de développement durable (ODD) pour, avec et par les personnes porteuses de handicap ». L’atteinte de plusieurs ODD est en péril à cause de l’inaction et des nombreuses crises mondiales. Les conclusions préliminaires du rapport à venir des Nations Unies sur le handicap et le développement en 2023 indiquent que le monde risque davantage de ne pas atteindre plusieurs ODD liées aux personnes en situation de handicap.
Ces personnes ont toujours été marginalisées et sont souvent laissées-pour-compte. Tous les membres de la communauté de York sont encouragés à parfaire leur compréhension de la situation des personnes en situation de handicap dans tous les aspects de la vie politique, sociale, économique et culturelle. Il est également important de réfléchir aux expériences de ces personnes dans les cinq piliers des ODD, à savoir : population, planète, prospérité, paix et partenariats. Par exemple, à l’intersection du genre et du handicap, les femmes et les filles en situation de handicap sont extrêmement vulnérables, ce qui aggrave les défis et les obstacles qu’elles rencontrent.
La mini-série REDDI (droits, équité, décolonisation, diversité et inclusion) du Centre des droits de la personne, de l’équité et de l’inclusion (CHREI) de York propose un atelier qui fait la promotion de l’accessibilité et des aménagements proactifs. Intitulé « Challenging Notions of Ableism: Breaking Barriers to Social Inclusion » (Remettre en question les notions d’incapacité : briser les barrières de l’inclusion sociale), cet atelier examine l’interprétation du handicap et l’omniprésence du capacitisme et encourage les participants à réfléchir de manière critique à ce que signifie être « capable » et à quoi un avenir sans capacitisme pourrait ressembler. Cette séance s’appuiera sur des exemples de discrimination et d’exclusion individuelles et systémiques et demandera aux participants d’élaborer des réponses à l’exclusion sociale. Elle aura lieu le 4 décembre de 10 h à 11 h 30. Inscrivez-vous dans YULearn.
Merci. Thank you. Miigwech.
Alice Pitt Vice-présidente intérimaire de l’équité, des personnes et de la culture
Criminalizing coercive control may do more harm than good, says prof
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Creating a Criminal Code of Canada offence that specifically sanctions coercive control in cases of intimate partner violence would do little to protect women and children and may do more harm than good, said Osgoode Hall Law School Professor Janet Mosher in a recent submission to the federal Department of Justice.
Janet Mosher
Bill C-332, a private member’s bill calling for an offence of coercive control to be added to the Criminal Code, is currently awaiting second reading in the House of Commons. It builds on a similar bill put forward by the New Democratic Party two years ago, which died on the order paper.
Mosher and her co-authors, Osgoode PhD student Shushanna Harris, University of Calgary law Professor Jennifer Koshan and University of Saskatchewan law Professor Wanda Wiegers, submitted their paper last month in response to a Justice Canada invitation for comment on the proposed bill.
In intimate relationships, coercive control can take the form of enforced isolation, surveillance, threats, degradation, humiliation, and sometimes physical and sexual violence. It can leave women and children feeling like they’re walking on eggshells, the experience inflicting lasting psychological scars and, in some cases, post-traumatic stress disorder. Elements of coercive control are among the risk factors correlated with lethal violence.
“There’s agreement that coercive control is a serious problem and needs to be understood by all actors in the legal system,” said Mosher.
“But there’s not good evidence that creating more criminal offences or increasing penalties actually works generally to deter this kind of violence,” she added. “And we also know that there are really significant problems in how the criminal justice system currently responds to intimate partner violence.”
A parliamentary committee that investigated the issue in April 2021 recommended the government consider drafting legislation directed at coercive control. In recent years, changes to the federal Divorce Act and Ontario’s Children’s Law Reform Act have redefined family violence to include coercive and controlling behaviour. The Canadian Association of Chiefs of Police has also advocated for new offences specifically targeting coercive control.
But Mosher said evidence from countries such as England, which has had an offence of coercive control since 2015, is that judges, lawyers and police officers have difficulty conceiving of an offence based on a pattern of conduct and often misunderstand what coercive control is.
“It has lots of different components,” she added. “There are many different tactics. And it’s very much not focused on a single incident or a small handful of incidents, but it’s looking at a pattern of conduct over time.
“So in terms of proving it and getting the evidence before a decision maker, it’s pretty complicated,” she explained. “It takes time and it takes resources, in addition to knowledge and understanding.”
The experience in England is telling, she noted: A recent study found that six of seven cases of coercive control were discontinued due to evidentiary challenges.
In their submission to the Department of Justice, Mosher and her co-authors also argue that a specific Criminal Code provision would be ineffective in deterring coercive control because most women who experience intimate partner violence do not contact the police. That’s especially true for Black, Indigenous and queer women.
“Contacting the police has many potential ramifications,” she said. “If you have children, the child welfare authorities will be notified. If you’re a Black woman or an Indigenous woman, you’re much more likely to have your children taken from you. That’s a reason why you might not contact the police.”
Just as concerning, she added, is how many women – more likely marginalized women – are wrongfully charged with domestic violence-related offences because of police misunderstanding or the abusive partners’ manipulation of the legal system. Adding an offence of coercive control opens up even more opportunities for manipulation, said Mosher.
Even if a woman calls the police and it results in a charge, there is little protection that comes from that, she said. “It may make some women and children safer, but it will actually, in our view, make many women and children less safe.”
She said that the March 2023 report of the Nova Scotia Mass Casualty Commission, which conducted a public inquiry into the 2020 shooting of 22 people in and around Portapique, N.S., concluded that strong community-based responses to intimate partner violence that give women safe spaces would be more effective than carceral responses in protecting women and children.
A national action plan released in 2021 by Women’s Shelters Canada provides many solid recommendations on ending violence against women, said Mosher, including providing adequate income, adequate safe housing, and better and early interventions for abusers.
Centre for Feminist Research celebrates feminist scholarship with new award
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York University’s Centre for Feminist Research has launched the inaugural Medal for Excellence in Feminist Scholarship in Canada to support and raise the profile of the rich and diverse contributions of feminist scholars nationally.
From left to right: Ena Dua, Bonita Lawrence and Meg Luxton.
“This award is a reminder that feminist research matters and that feminists of all genders are producing rigorous, relevant research and writing for our times,” says Elaine Coburn, director of the Centre for Feminist Research. “It creates a space to celebrate all that is excellent in feminist scholarship, across Canada.”
The award was created with an anonymous donor to honour and bring visibility to the work of three York University faculty members – Ena Dua, Bonita Lawrence and Meg Luxton – who have set standards of excellence by transforming understanding of women’s everyday realities and struggles through anti-racist, Indigenous feminist and feminist political economy scholarship.
Dua is a professor and graduate director in sexuality and women’s studies in the School of Gender, Sexuality & Women’s Studies who teaches critical race theory, anti-racist feminist theory, postcolonial studies and feminist theory. She has taken up the question of racial justice, from feminist perspectives, across all of her writing. She forthrightly confronts racial injustices in Canada, and her scholarship has unpacked racial, gendered inequities in the University with the aim of creating space for each and all voices in the academy.
Lawrence (Mi’kmaw), who teaches in the Indigenous Studies program, has taken up the questions of colonialism and Indigenous identity, especially centering the experiences of non-status and urban Indigenous people. Her important work has looked at Indigenous Peoples’ “fractured homelands” under colonialism and celebrated strong Indigenous women, their power and their agency, despite a genocidal context.
Luxton is a professor in the School of Gender, Sexuality and Women’s Studies, and one of Canada’s best-known feminist political economists, with her work shedding new light on gender divisions of labour and the relationship between paid employment and unpaid domestic labour; working class lives, communities and class politics; and the history of the women’s movement, in Canada and internationally.
“We hope that the new award, in honouring these three scholars, makes clear the ways that feminisms must and does take up questions of racism, indigeneity and working class women’s lives as central to anti-oppressive feminist scholarship,” says Coburn. “Together, they inspire us to feminist scholarship that matters: scholarship that looks squarely at injustice and that celebrates and supports struggles for a more just world.”
Over the next 10 years, the medal will provide each recipient with $500, and winners will be invited to give a lecture at the Centre for Feminist Research – both to help further scholars and the Centre’s impact on the challenges still facing women today.
“We hope that others see this medal and CFR’s activities, more broadly, as contributing to important national and international conversations about women’s struggles for equality and our hopes for more just and liveable worlds,” says Coburn.
Applications for the Medal for Excellence in Feminist Scholarship in Canada will be evaluated by a committee of three faculty members. Those interested in being on the committee can write to cfr-coor@yorku.ca with their CV and one paragraph expressing their interest by Jan. 15, 2024.
Applications for the medal will open on Jan. 30, 2024 and the deadline is March 1, 2024 for submissions. The inaugural winner will be announced on May 1, 2024.
Anucha family creates new award to support Black entrepreneurs
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A new award created and funded by the Anucha family is the first of its kind to support Black entrepreneurs at YSpace, York University’s entrepreneurship and innovation hub.
The award commemorates the family’s son and brother Alfred Anucha, a visionary, young entrepreneur who passed away at the age of 26. A former York student, Alfred was also the founder of Stay Ulo, a network of properties that offers flexible apartment rentals with a hotel experience.
Alfred’s passion for entrepreneurship and his unwavering belief in the potential of young people to create were the cornerstones of his life, shared family members at a recent event to announce the award. “ ’Bet on yourself. Bet on the future.’ This was Alfred’s mantra and encapsulates the vision of the Alfred Anucha Award,” said Adanna Anucha, Alfred’s sister. “Our family is excited to support young, Black entrepreneurs to ‘bet on yourself’ just as Alfred did. We hope this award will serve as a living tribute and memorial to honour Alfred’s legacy as a true innovator and dreamer.”
The award will support aspiring Black entrepreneurs in partnership with YSpace and the Black Entrepreneurship Alliance. Self-identifying Black individuals (Canadian citizens, permanent residents and protected refugees) are eligible for this award, with a preference given to Black male entrepreneurs under the age of 30, in recognition of the historical underrepresentation by Black male entrepreneurs in this space.
Each year, a maximum of four entrepreneurs will receive $2,500 each in recognition of their commitment to their craft. Additionally, recipients can take advantage of YSpace’s specialized programming free of charge to nurture their ventures. Current and past program participants are eligible and encouraged to apply for this award, which will be available annually for the next five years.
The award is also a testament to the deep connection the Anucha family shares with York University. Alfred’s mother, Uzo Anucha, is an associate professor at the School of Social Work in the Faculty of Liberal Arts & Professional Studies. She is also the York Research Chair in Youth and Contexts of Inequity. Alfred’s four siblings have also attended York University.
David Kwok, director of entrepreneurship and innovation at YSpace, said, “YSpace is honoured to have this partnership and support of the Anucha family. This award will be a catalyst for many young, Black entrepreneurs to receive the funding and support necessary to continue their impactful work in the community. Our collaborative efforts will create greater access and growth for these Black-led businesses.”
Applications for the first round of awards are open from Nov. 20 to Dec. 15. More information about the application processes will be available on the YSpace website.
Join York’s memorial ceremony for National Day of Remembrance and Action on Violence Against Women, Dec. 6
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La version française suit la version anglaise.
Dear York community,
As we approach the National Day of Remembrance and Action on Violence Against Women on Dec. 6, we welcome all members of the York University community to join us in commemorating the 14 women who tragically lost their lives on the same day 34 years ago at École Polytechnique in Montreal.
Participating in community events and conversations helps to eliminate gendered violence and gives us an opportunity to recognize the 14 women who lost their lives: Geneviève Bergeron, Hélène Colgan, Nathalie Croteau, Barbara Daigneault, Anne-Marie Edward, Maud Haviernick, Barbara Klucznik-Widajewicz, Maryse Laganière, Maryse Leclair, Anne-Marie Lemay, Sonia Pelletier, Michèle Richard, Annie St-Arneault and Annie Turcotte.
We also acknowledge the missing and murdered Indigenous women and members of the 2SLGBTQIA+ community on this day.
Together, we must reaffirm our commitment to stand with survivors, raise awareness and challenge the sociocultural norms that perpetuate violence and hate in all its forms. In a time where conflict continues to devastate countless communities across the world, it is also an opportunity for us to reflect on our individual and collective capacity to drive positive change and to help realize a world that is safe, welcoming and inclusive for us all.
In solidarity with victims and survivors, we invite you to wear a white ribbon during the memorial ceremony as a symbol of your commitment to ending gender-based violence. Ribbons are available at the Centre for Sexual Violence Response, Support & Education (The Centre).
As part of a larger international campaign, 16 Days of Activism against Gender-Based Violence, The Centre and partners from across York are offering a series of webinars and events that provide an opportunity to reflect on the ways our community can work together to eliminate gender-based violence and recognize the impact it has on our community. For more information about The Centre and upcoming events and resources, please visit the website.
Sincerely,
Rhonda Lenton President & Vice-Chancellor
Lisa Philipps Provost & Vice-President Academic
Joignez-vous à la cérémonie de York pour la Journée nationale de commémoration et d’action contre la violence faite aux femmes le 6 décembre
Chers membres de la communauté de York,
À l’approche de la Journée nationale de commémoration et d’action contre la violence faite aux femmes le 6 décembre, nous invitons tous les membres de la communauté de l’Université York à se joindre à nous pour commémorer les 14& femmes qui ont tragiquement perdu la vie le même jour, il y a 34 ans, à l’École polytechnique de Montréal.
Participer à des événements et des conversations communautaires contribue à éliminer la violence basée sur le genre et nous donne l’occasion de rendre hommage aux 14 femmes qui ont perdu la vie : Geneviève Bergeron, Hélène Colgan, Nathalie Croteau, Barbara Daigneault, Anne-Marie Edward, Maud Haviernick, Barbara Klucznik-Widajewicz, Maryse Laganière, Maryse Leclair, Anne-Marie Lemay, Sonia Pelletier, Michèle Richard, Annie St-Arneault, et Annie Turcotte. Nous rendons également hommage aux femmes autochtones disparues ou assassinées et aux membres de la communauté 2ELGBTQIA+ en ce jour.
Ensemble, nous devons réaffirmer notre engagement à soutenir les survivantes, à sensibiliser l’opinion et à remettre en question les normes socioculturelles qui perpétuent la violence et la haine sous toutes leurs formes. À une époque où les conflits continuent de dévaster d’innombrables communautés à travers le monde, c’est aussi l’occasion de réfléchir à notre capacité individuelle et collective à susciter des changements positifs et à contribuer à la réalisation d’un monde sûr, accueillant et inclusif.
Détails de l’événement Date : Mercredi 6 décembre Heure : 13 h à 14 h
Campus Keele Lieu de l’événement en personne : The Eatery (premier étage), Centre Bergeron pour l’excellence en ingénierie Format : Hybride (en personne et en ligne)
Campus Glendon Salle de visionnement : Manoir Glendon Format : Hybride (en personne et en ligne)
En solidarité avec les victimes et les survivantes, nous vous invitons à porter un ruban blanc lors de la cérémonie commémorative afin de symboliser votre engagement à mettre fin à la violence basée sur le genre. Les rubans sont disponibles au Centre d’intervention, de soutien et d’éducation contre la violence sexuelle (le Centre).
Dans le cadre d’une campagne internationale plus large, 16 jours d’activisme contre la violence basée sur le genre, le Centre et des partenaires de York proposent une série de webinaires et d’événements qui permettent de réfléchir à la manière dont notre communauté peut travailler pour éliminer la violence sexiste et reconnaître l’impact qu’elle a sur notre communauté. Pour plus d’informations sur le Centre et sur les événements et ressources à venir, veuillez consulter le site Web.
Sincères salutations,
Rhonda Lenton Présidente et vice-chancelière
Lisa Philipps Rectrice et vice-présidente aux affaires académiques
Research shines light on health-care inequalities for Black women
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A new research report co-authored by Professor Agnès Berthelot-Raffard of York University’s Faculty of Health investigates the lack of evidence-based data for Black women’s health care in Canada.
The novel study was funded by the Université du Québec à Montréal and aims to fill an important research gap in health-care equity in Canada. The research was done in a by-and-for methodology that centres on the needs and perspectives of the target community, says Berthelot-Raffard. It focuses on the reproductive rights of Black women in Canada.
Including testimonies gathered from Black professionals and patients, the report provides an analysis of the overall experience of Black women within the gynecological and obstetric health-care system, particularly regarding maternity, endometriosis and uterine fibroids.
Agnès Berthelot-Raffard (left) with co-authors and members of her research team, Samia Dumais (middle) and Alexandra Pierre (right), both of Concordia University.
Started in 2020 in collaboration with Relais-Femmes, a feminist organization in Quebec, the study addresses a 2018 United Nations report that highlights the health disparities and limited health-care access faced by Black and Afro-descendant women compared to other Canadian population groups.
Research from the U.S., Canada and France indicates that Black women encounter differing perceptions and treatment in gynecologic and obstetrical care compared to non-Black women, says Berthelot-Raffard. Access to health care and adequate gynecological and obstetrical treatments for Black women is significantly influenced by stereotypes regarding the Black women’s embodiment, racial biases, social status discrimination, ageism and ableism, social and racial inequalities, geographic disparities, limited insurance or public care access due to citizenship status etc.
“These disparities lead to significant consequences, ranging from misdiagnosis, delayed care, limited access to information for informed decision-making, to mental health issues such as depression,” says Berthelot-Raffard. “Black women face increased risks during childbirth due to more caesarean deliveries than other groups of women, more late diagnosis of breast cancer, fibroids, endometriosis and higher rates of postpartum depression. In evaluating the quality of care during pregnancy and postpartum, women emphasize the importance of feeling welcomed within the health-care system alongside their physical well-being.”
The researchers will disseminate the study to various audiences, including health-care professionals such as doctors, obstetricians, nurses and students in health sciences and medicine, as well as with ethicists and occupational orders. The goal is to open the discussion in fertility clinics, birthing centres, abortion centres and feminist organizations as part of a campaign to raise awareness about these critical issues for reproductive justice and equity in the health-care setting.
“We’ve uncovered instances of obstetric and gynecological violence, including forced consent, disregarding their agency, physical abuse, verbal microaggressions and indifference from health-care professionals,” says Berthelot-Raffard. “Our analysis suggests that Black women in Quebec are more exposed to overmedicalization and medical negligence, indicative of discriminatory and abusive practices rooted in health-care stereotypes. This report marks a starting point in acknowledging obstetric and gynecological violence experienced by Black women in the Quebec health-care system.”
From practising law to innovating health care: York prof harnesses potential of genomic medicine
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By Ashley Goodfellow Craig, YFile editor
York University Assistant Professor Ian Stedman says the diagnosis of his first-born daughter’s rare disease likely saved his life – and now, he’s focusing his work on helping to do the same for others across Canada.
Ian Stedman
The Osgoode Hall Law School alum and lawyer – appointed as assistant professor in the School of Public Policy & Administration in the Faculty of Liberal Arts & Professional Studies, with graduate appointments at Osgoode, in Science and Technology Studies and in Socio-Legal Studies – is a co-applicant on a $15-million project that aims to disrupt the current health-care model through the development of a first-of-its-kind national genomics database.
The Pan-Canadian Human Genome Library (PCHGL), funded through a five-year grant from the Canadian Institutes of Health Research, will bring together human genome sequencing initiatives across the nation to enhance the collective well-being of people in Canada.
It will have huge implications for health care, says Stedman, especially for those living with rare diseases and struggling to find a diagnosis – an experience he’s lived through.
Beginning at a young age, Stedman suffered from a host of symptoms that grew in severity as he got older – frequent rashes, periodic fevers, headaches, bloodshot eyes, arthritis and eventually hearing loss – that had doctors and specialists stumped for more than 30 years.
Looking back over his health records from the first 18 years of his life, Stedman noted 190 separate visits to his family doctor, walk-in clinics and specialists – not to mention the many visits to emergency departments when his pain became unbearable – that had him seeking answers to his ongoing progressive illness.
“So, my story is 30 years undiagnosed, having no idea what was going on, and then just giving up,” says Stedman.
That was, until his daughter Lia began exhibiting similar symptoms during her first year of life. When her health declined a few months before her first birthday, she was brought to the SickKids emergency room, which marked the beginning of their diagnostic journey together.
Lia (right) with sisters Ivy (left) and Ainsley (middle).
Ian Stedman’s daughter Lia.
In 2014, both father and daughter were diagnosed with a one-in-a-million genetic disorder called Muckle-Wells syndrome (MWS), a member of the family of genetic disorders known as cryopyrin associated periodic syndromes. Thought to be the 12th and 13th in Canada to receive the diagnosis – with the confirmation of Lia’s MWS leading to his same diagnosis – Stedman learned that if left untreated, the syndrome results in premature death before the age of 36 for one in three people.
He was 32.
After diagnosis, and with the realization that his daughter had potentially saved his life, Stedman began his advocacy work through the Canadian Organization for Rare Disorders, where he forged connections with those in the health-care space. He met computer scientist Michael Brudno from the University of Toronto, who, at the time, was the scientific director for SickKids’ Centre for Computational Medicine and co-founder of PhenoTips, a Toronto-based team that provides software and services to genetic health-care providers.
PhenoTips takes your genetic information and your list of symptoms and uses machine learning to search for other individuals with the same symptoms (phenotype) to then compare whether there are similarities in the related genomes (genotypes). The goal is to offer a potential differential diagnosis or to reveal a possible genetic marker for future research.
After hearing Stedman’s story at a conference, Brudno approached him and asked if he could digitize his medical records.
“He wanted to run my information through PhenoTips to see whether the software would be able to suggest a diagnosis,” says Stedman. “It took the software eight visits to figure out what was wrong with me … because he had a dataset of genomes that he could run it against, and so that was the moment where I thought, ‘OK, I’m not just doing law, I’m doing law and health policy now.’ ”
This experience inspired Stedman to pivot his professional focus and learn how to actualize this type of groundbreaking health-care tool for all Canadians.
Ian Stedman with daughter Lia. Both father and daughter are in good health with the right treatment for their diagnosis of a one-in-a-million genetic disorder called Muckle-Wells syndrome.
“It took me 32 years to get a diagnosis, and it doesn’t seem like it has to be like that anymore. If I could enter the health-care system now, and if that system was allowed to learn from everyone’s health data, I could be diagnosed in one visit,” he says. “It’s actually my mission in life to figure out how that could be possible so that people like me – those coming up behind me – don’t have to tell a story like the one I tell.”
Drawn to the possibility of creating positive change in the health-care landscape, Stedman became more involved in advocacy work, learned more about health research, joined several boards related to rare diseases and genetics in medicine, and advanced his learnings as a social scientist in a new discipline.
Now, Stedman will lead a team responsible for patient partnership, participant engagement, training and outreach for the national genome database PCHGL.
Stedman emphasizes the significance of involving patients in scientific research and highlights the need for patient involvement, and education, in the PCGL initiative. This approach challenges the traditional health-care model and aims to enhance the role of patient partners.
The project provides an opportunity to empower patient partners in various aspects of the initiative and seeks to ensure their voices are heard in matters including technical decisions, ethics and policymaking.
Stedman will also contribute to a working group overseeing ethical and regulatory compliance for the library to meet its goal to collect, store and improve access to Canadian genomic data in a way that is equitable, secure and sustainable.
One of the key questions of the project is “How do we build a more inclusive genomic infrastructure in Canada?” says Stedman.
“Part of our project is to look at who is represented and who is not represented in the genomes we’ve sequenced in this country. With this library, we can start to take control over improving our representation within the data.”
Dr. Guillaume Bourque, director of the bioinformatics department at the McGill Genome Centre, will lead this initiative, collaborating with researchers from various partnering institutions. The database project is an extension of the Government of Canada’s Drugs for Rare Diseases Strategy. Its aim is to create a centralized genome library that reflects Canada’s diverse population and empowers researchers and health-care professionals with invaluable insights.
“The real vision of this library is that it’s going to break down all the silos, so when someone gets diagnosed in Ontario, their doctor can say, ‘Let me go to the library and see what’s out there. Let me see who I can find, and whether they’ve consented to be contacted. Let me see if I can find other physicians who are affiliated with those genomes,’ ” says Stedman. “And it’s a lot easier, because it’s one massive registry.”
The library will be behind a secure infrastructure that allows researchers and medical professionals to access information, but not remove it. There are interdisciplinary experts in data infrastructure, ethics and governance, patient partnership and operating principles teaming up to realize this shared vision for this life-changing resource.
The team already has commitments from a few groups willing to share, with patient consent, genomic data. The hope is that within two years, PGCL will be close to launching.
“When you realize the power genomic data holds to help improve people’s health – and when you’ve lived that realization – it’s a lot easier to buy into the big idea,” says Stedman. “It’s visceral, it’s real. That’s what makes this project so powerful and that’s what I think will ultimately make this library successful.”
Stedman also serves on the executive of both the Centre for AI & Society and Connected Minds (CFREF) at York University.
York University marks 16 Days of Activism Against Gender-based Violence
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The Centre for Sexual Violence Response, Support & Education at York, along with partners across the University, will offer a series of events to mark the 16 Days of Activism Against Gender-based Violence, an annual international campaign that begins on Nov. 25, the International Day for the Elimination of Violence Against Women, and goes until Dec. 10, Human Rights Day.
Started in 1991 as a global effort to recognize and speak out against gender-based violence, the 16 Days campaign aims to renew commitment to end violence against women, girls and 2SLGBTQIA+ individuals.
The Centre has organized a variety of events to inspire and educate community members while honouring victims of gender-based violence as well as 2SLGBTQIA+ individuals from all walks of life who experience and have lost their lives to violence.
Human Rights Day honours the date the United Nations General Assembly’s adopted and proclaimed the Universal Declaration of Human Rights on Dec. 10, 1948. This document sets out fundamental human rights to be universally protected. It is a milestone in the history of human rights, and has been translated in over 500 languages, holding the Guinness World Record as the most translated document.
The Centre at York University works to foster a culture where attitudes and behaviours that perpetuate sexual violence are rejected, survivors are supported, community members are educated and those who commit incidents of sexual violence are held accountable. It offers supports and services, training and events to educate and help University community members.
YU Athlete’s Memorial Pin-making Event – in partnership with Athletics & Recreation
Date: Nov. 27 Time: noon to 2 p.m. Location: 305 York Lanes
Join YU athletes as they create white ribbons (a global movement of men and boys working to end male violence against women and girls) and purple ribbons (attempts to educate the public that violence against women and children is not culturally acceptable) for the York community throughout the duration of the week.
The Centre for Sexual Violence Response, Support & Education in partnership with Toronto Public Health hosts a session that facilitates discussions among participants about how parents/caregivers can foster healthy attitudes about sexuality with their children and support their needs. Registrants are asked to submit questions and topics they are interested in learning more about for this session when they register.
The Centre for Sexual Violence Response, Support & Education in partnership with Nellie’s hosts a workshop on healthy dating and relationships for those who identify as women in university to learn about what healthy relationships look like, how to identify red flags in a relationship and what to do if they need support. The workshops will be interactive and allow students to learn and understand the topics in a trauma-informed environment.
The Centre for Sexual Violence Response, Support & Education in partnership with Toronto Public Health hosts a workshop with the goal of providing parents/caregivers with the tools, knowledge and support they need to foster healthy attitudes about sexuality with their tweens.
The Centre for Human Rights, Equity and Inclusion in partnership with the Centre for Sexual Violence, Response, Support & Education hosts an interactive session where participants discuss the issue of misogynoir, which shows how sexism and racism manifest in Black women’s lives to create intersecting forms of oppression. Participants explore the detrimental impacts of internalized racism as well as engage in a discussion about healing and self-care.
York University reaffirms support for trans community on Trans Day of Remembrance
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La version française suit la version anglaise.
In 2017, the Ontario government passed the Trans Day of Remembrance Act in acknowledgement that trans people in Ontario face not only indifference, prejudice and hatred, but also anti-trans violence. It joined other jurisdictions in naming Nov. 20 as a day to remember those murdered, to recognize the pervasive problem of crimes against trans people and to remind ourselves of the diversity and resilience of the trans community. The goal of a civil society is to ensure the dignity of all people, and as we take a moment to remember and mourn the losses, it is also important to enhance our understanding.
During the development of the 2022 Federal 2SLGBTQI+ Action Plan, a survey revealed that transgender and Two-Spirit respondents were most likely to report discrimination in terms of employment and other forms of harassment that, for example, resulted in unstable housing. Transgender men reported the lowest levels of life satisfaction, and friendship was identified by many as an important source of comfort in their lives.
The work of reducing barriers and creating inclusive and welcoming communities and institutions belongs to us all. As stated in the York University Decolonizing, Equity, Diversity and Inclusion (DEDI) Strategy, “Creating a sense of inclusion and belonging requires supportive structures and social spaces where diverse perspectives are heard, acknowledged and respected … Achieving an inclusive and equitable community is not a destination, but rather a journey that requires ongoing attention and action. Organizational change must be informed by the foundational and ongoing work to advance DEDI through research, curriculum, teaching, service and programming.”
York University reaffirms its support for trans students, staff, faculty, instructors and alumni, and continues to denounce transphobic discrimination and violence everywhere.
The Centre for Human Rights, Equity & Inclusion has identified and developed a number of resources for the community, including a guide on gender expression and gender identity, available here.
The SexGen Committee will markNov. 20 from 1 to 4 p.m. with Rest, Regenerate, Resist, a space where the trans community can mourn, engage with community and refill our cups so we can keep resisting transphobia. Quiet time will be provided to remember those we have lost to anti-trans violence. There will be workshop stations such button making, art, bracelet making, LEGO building and beanbag chairs. A counsellor from Student Counselling, Health & Well-being will be on site to provide support to members of the community. Marshalls will be present to ensure folks in the room are safe. It will be held in the Serenity Room in the Second Student Centre. Light refreshments will be available.
Let us continue the journey together of making York a safer space where everyone has the opportunity to feel like they belong.
Thank you. Merci. Miigwech.
Alice Pitt Interim Vice-President Equity, People and Culture
L’Université York réitère son soutien à la communauté transgenre à l’occasion de la Journée du souvenir trans
En 2017, le gouvernement de l’Ontario a adopté la Loi sur la Journée du souvenir trans[ALG1] en reconnaissance du fait que les personnes transgenres en Ontario sont confrontées non seulement à l’indifférence, aux préjugés et à la haine, mais aussi à la violence. Elle s’est jointe à d’autres instances pour faire du 20 novembre une journée de commémoration des personnes assassinées, pour reconnaître le problème omniprésent des crimes contre les personnes transgenres et pour nous rappeler la diversité et la résilience de la communauté transgenre. L’objectif d’une société civile est de garantir la dignité de toutes les personnes. Alors que nous prenons un moment pour nous remémorer et déplorer les vies perdues, il est également important de mieux comprendre la situation.
Lors de l’élaboration du Plan d’action fédéral 2ELGBTQI+ 2022, une enquête a révélé que les répondants transgenres et bispirituels étaient les plus susceptibles de signaler des discriminations en matière d’emploi et d’autres formes de harcèlement qui, par exemple, entraînaient une instabilité du logement. Les hommes transgenres ont déclaré les niveaux les plus bas de satisfaction dans la vie, et beaucoup d’entre eux ont dit que l’amitié était une grande source de réconfort.
La réduction des barrières et la création de communautés et d’institutions inclusives et accueillantes incombent à tout le monde. Comme indiqué dans la Stratégie DEDI de l’Université York, « Pour créer un sentiment d’inclusion et d’appartenance, il faut des structures de soutien et des espaces sociaux où les diverses perspectives sont entendues, reconnues et respectées (…). L’atteinte d’une communauté inclusive et équitable n’est pas une destination, mais plutôt un parcours qui nécessite une attention et une action continues. Le changement organisationnel doit être étayé par un travail fondamental et continu pour faire avancer la DEDI au moyen de la recherche, des programmes d’études, de l’enseignement, du service et de la programmation. »
L’Université York réaffirme son soutien aux membres de la communauté étudiante, du personnel, des corps professoral et enseignant et aux diplômés et diplômées transgenres, et continue de dénoncer la discrimination et la violence transphobes partout dans le monde.
Le Centre des droits de la personne, de l’équité et de l’inclusion a défini et développé un certain nombre de ressources pour la communauté, notamment un guide sur l’expression et l’identité de genre, disponible ici (en anglais).
Le comité SexGen se réunira le 20 novembre de 13 h à 16 h avec Se reposer, se régénérer, résister, un espace où la communauté transgenre peut faire son deuil, s’engager avec la collectivité et se ressourcer pour continuer à résister à la transphobie. Un moment de silence sera prévu pour se souvenir de ceux et celles que nous avons perdus à cause de la violence anti-trans. Il y aura des ateliers d’art, de fabrication de boutons et de bracelets, de construction avec des briques LEGO et des fauteuils poires confortables. Des personnes-conseils des Services de santé, de counseling et de bien-être étudiant (SCHW) seront sur place pour apporter leur soutien aux membres de la communauté. Des agents assureront la sécurité des personnes sur les lieux. L’événement aura lieu dans la salle Serenity au Second Student Centre. Des rafraîchissements seront servis.
Faisons ensemble de York un espace plus sûr, où chaque personne a le sentiment d’être à sa place.
Merci. Thank you. Miigwech.
Alice Pitt Vice-présidente intérimaire de l’équité, des personnes et de la culture
