In 2017 students and staff at The School of Disability Studies launched five web-docs aiming to bring current disability activism into online classrooms. This project was a collaboration between Student Advisory Committee members Marsha Ryan, Nicole Meehan, Emily Delbecchi, Pauline Mwangi, Carolyn Lee-Jones, and Laura Mele. Chelsea Jones, Kim Collins and Melanie Panitch were the primary investigators on this project.
Developed with a grant from Ryerson’s Learning and Teaching Enhancement Fund, these web-docs responded to requests from part-time online students to form “real world” connections with Toronto-based disability activists. This multidisciplinary project asked contemporary disability activists to think through the ways in which they challenge the status quo in their day-to-day work. Activists spoke to themes of: online queer movements, mad activism, accessible city building, crip arts, and institutional survival.
Some of the web-docs highlight more than one disciplinary theme. For example, activist Melanie Marsden discusses the politics of parenting and allyship in this 6-minute film:
Many students enrolled in this part-time program are Southern Ontario-based professionals who take classes across faculties. They are online learners with particular understandings of disability espoused by their workplaces, such as school and health care systems. They are often required to respond to disability in ways that are in opposition to disability-related activism and its intersections, including, for example, mad and queer activists whose social justice work resists and disrupts school and health care systems. In her discussion about siloed services and sexuality, Fran Odette describes the significance of interdependent and independent decision making within these and other systems:
As learners, Ryerson students are called to orient themselves to broader understandings of disability in order to effectively engage in community. Therefore, our objectives in producing these films were to:
Produce fully accessible teaching tools for online instructors
Build connections with disability communities beyond our work and school
Learn from real world disability activism/s that connect theory and practice
Highlight Toronto-based social justice movements
Develop a digital archive of disability activism
Wide-reaching in scope, these accessible web docs bring Toronto’s disability leaders into online classrooms, thus empowering students to forge knowledgeable connections with the wider disability community that may be difficult to access from their professionalized vantage points. For example, Disability Pride March co-creator Kevin Jackson discusses his work organizing the annual event in Toronto:
This project started in January 2016 and was completed in June 2017. Our commitment to accessibility was that involved consideration of the ableist barriers over which all of the contributors behind these web docs have little control. The need for flexibility in any disability-based project stems from features of its diversity: a dependency on attendants, extra time needed for accessible transportation, equipment malfunctions, an ableist encounter with a stranger that interrupts filming and shifting understanding of consent (Kafer, 2013). Eliza Chandler offers some examples of the ways in which it is important to think broadly about access in creating cultural spaces and representation of disability in this film:
Importantly, these web docs are be accessible in that they apply to the AODA’s Integrated Accessibility Standard Regulation. The web docs are transcribed, captioned, and presented with ASL interpretation. However, through the production of these films we learned that accessibility is fluid; our understanding of access changed throughout the production process. We learned to think through crip time, the politics of storytelling, ethics, and collaboration:
Crip time: Working in crip time means understanding that accessibility is a broad concept; accessibility means meeting AODA barriers and simultaneously understanding that people face ableist barriers as they tell their stories
The politics of storytelling: often stories are not told in linear ways, but rather in fragments as Barry’s film demonstrates.
Ethics: Consent is an ongoing process that can change and impact production.
Collaboration: Negotiating creative differences and the importance of being entrusted with others’ stories is a key part of the creative process.
Each of these features–crip time, the politics of storytelling, ethics, and collaboration–emerged in our work with Barry Smith, whose story emerged gradually through one interview Here, Barry tells his stories of living both in and outside of Huronia Regional Centre.
In total, the project lasted spanned 19 months and cost approximately $13,000 in total. Our costs were divided as follows:
Pre-production (research such as interviews and participant honorariums): $1400
Production (filming): $4,500
Post-production (editing, captions, audio descriptions and ASL interpretation): $7,000
Cost of dissemination (conferences, posters, and screenings): $100
Lee Armstrong: Lee planned a degree in art history but found a more satisfying career path through a Developmental Service Worker diploma that led to Disability Studies. Working in a range of service settings “sparked the fire” in her to learn to think about disability in new ways which she has done through five semesters in our program. Based in an Ottawa hospital, her job in augmentative communication and writing services challenges her every day to apply classroom knowledge to advocacy for people’s right to a voice.
Naleni Jacob: Naleni immigrated to Canada in the 1990s with her two sons, one of whom is disabled, and has been the sole provider for them ever since. It is through experiences of parenting that she has come to Disability Studies, specifically through fighting for her son’s rights to education. She knows intimately the struggles that immigrants, in particular, face in attempting to achieve substantive inclusion, and has been heavily involved in parental outreach, and addressing issues of long-term care. She has become an activist mother.
Joanne McQuinn (not present due to debilitating back pain): A new student to Disability Studies, Joanne is “incredibly excited and proud to be part of such an amazing program”. She is employed as an Educational Assistant in a high school program for autistic students. In this context, she is an advocate for rights, justice and change in what is still called “special education.” Her goal is to work in post-secondary student accessibility services or helping disabled students transition to post-secondary studies.
Alisha Barfoot travelled from her home in Owen Sound to celebrate with us today. she has dedicated her academic and professional career to the practice of inclusive education. It is her passion — even if it means being unsettled in a job where disabled students are denied the meaningful learning experiences. A 2017 graduate of our program, Alisha’s final independent study painted portraits of inclusive education based on accounts of actual practice provided by inclusive educators.
Ryan Mcinally is filling the routine periods of unemployment that he experiences in his job with courses towards his Disability Studies degree – which he expects to complete by 2019. He works in an alternative classroom supporting at-risk youth, many of who have mental health labels. In our program, he is thinking about the contradictions of his own role, and using those reflections to develop strategies for improving the lives of students. This award supports Ryan’s educational aspirations, and his growing advocacy as an educator.
Ronnie Samarita: As a high school student, a co-op placement in an adult day program for labelled people sparked Ronnie into a Developmental Services Worker program and from there to Disability Studies. As an Educational Assistant, speaking up for students is a daily part of practice. Ronnie is grasping the complexities of the “support worker” role and looking to broaden his work into a range of age groups and school settings.
Nabella Siddique is of Pakistani origin but was born on the tiny Middle Eastern island of Bahrain where she perceives a powerful need for disability rights activism and the voices of disabled people. Taking up disability from a Canadian perspective has caused her to think about marginalization and discrimination as a global issue. As a teaching assistant with the Peel school board, she can feel the impact of Disability Studies in the way she deals with her students. As the twin sister of a disabled woman, she has a personal stake in inclusive education, human dignity and peace.
Megan Suggitt (unable to attend) is a first year student in our program who reports that she is already perceiving the world around her in ways that are more culturally alert – whether it is to Indigeneous people in Canada, the Hearing Voices movement or students with learning disabilities in educational settings around the world. Her studies with us and with Child and Youth care inspired her to start a non-profit business which offers support services to disadvantaged youth.
Sophia Owenya is a teacher and educational assistant from Windsor Essex who has spent more than 20 years providing support to children and adults with intellectual disabilities. Involved with charity organizations locally and internationally, she has done volunteer work in Rwanda and Tanzania. She is passionate about Disability Studies and determined to complete the program on schedule. This award upholds her hopes.
Nicole Cadwallader: In her application, Nicole tells us that Disability Studies has shaken her world. She started this program with zero knowledge about disability as social and political – but after three years, she is critically examining the world through potent new theoretical lenses. She works in the educational sector where disabled children and their families are still fighting for their rights. She knows what it is like to question the programs and systems that employ her but this program has given her tools to analyze how those systemic issues are being created. This award supports Nicole’s refusal to accept educational gaps as “normal” – and her pursuit of purposeful education for disabled students.
Melissa Rideout: For the past four years, Melissa has worked as a Teaching Assistant for the Peel District School Board. She came to Disability Studies to increase her knowledge and become a better advocate, to know how to speak back to demeaning comments in the face of the powers that teachers wield in classrooms. As her course work deepens, she reports that she is “gaining backbone”, getting fueled up to be the advocate she wants to be. She has learned that being a disability advocate means you are an advocate for every race, class and gender. She writes: “The job I may get after this program is not as important as the knowledge I foster and the leader I become.”
Francis Pineda: From first-hand experience as a racialized student, Francis can testify to the barriers that students face in completing post-secondary education – starting with high tuition fees. For several years he has been active in student politics and marked his third term with the Continuing Education Students’ of Ryerson by being elected its president. Through a range of collective projects, he tries to center marginalized voices such as those of disabled students. In Disability Studies, Francis finds support for deconstructing, challenging and unpacking the dominant system. His engagement in this program is shifting the pathway he will take after graduation.
Darlene Murrain: Darlene has always wanted to be involved in community organizing for the inclusion of disabled people. Her final independent study was about placing disabled people in the anti-black racism movement. But Darlene’s big aha! moment was learning about Inclusive Design from Charles Silverman in DST 614. “That was it”, she writes, “I had found my calling!” Now, as a graduate, she feels that she has tangible ways to apply her learnings. Her aspiration is to follow her passion by pursuing graduate studies in the field of Universal Design and education.
After a decade in the sector, Meghan Hogg is grounded in a feminist social justice approach to counselling and support in response to violence against women. In 2009-10, for Nellie’s Shelter, she co-researched and wrote a position paper on the intersections of trauma and violence, picking up on the ways that women’s voices and experiences are pathologised through systemic medicalized responses to trauma. In conference presentations and training workshops she draws upon the work of Mad activists/scholars, and describes the conversations that ensue as “sticky, profound, emotional, illuminating and deeply relevant” for professional practice.
Marsha Ryan: Originally from Moldova, Marsha brings to Disability Studies a political consciousness drawn from the confluence of Romanian, Ukrainian and Russian identities, languages and cultures. In Canada, Disability Studies has become her second home – a place where she encounters people who demonstrate leadership around injustice in a complex world. Last year, for her final independent study, Marsha spent most of the winter shadowing AODA activist David Lepofsky in his relentless pursuit of a provincial Educational Accessibility Standard. Using visual mapping, word walls and Twitter analytics, she teased out the ways that he builds community, shapes and disseminates ideas towards a more inclusive society.
KATHRYN: Disability Studies has an active Student Advisory Committee working with Kim Collins, our Student Engagement Facilitator to demonstrate community engagement strategies for/amongst part-time learners at a distance. This year, the committee wishes to recognize Paris Master-McRae for her powerful contribution to their work and the life of the School. Marsha Ryan will speak for the committee.
MARSHA: Paris Master-McRae is the gold standard when it comes to the School of Disability Studies. She knows the system from within. She knows it both as the Student Affairs Coordinator and as a program student, now Graduate and Alumni, Class of 2015. She is also an award winner, the recipient of the Malcolm Jeffreys Leadership Award. To Paris, “disability studies is not just a job or a program it is a community, a family.” She is a change-maker and a tireless advocate for values of the school, faculty and university. Guided by the Disability Studies motto “Vision. Passion. Action” her day-to-day work propels the work of equity, inclusion, and diversity. She will do whatever it takes and more to support staff, faculty and students, to offer encouragement and to explore new ideas. Paris’s welcoming smile, infectious laughter and open door create an environment that cultivates collegiality, camaraderie and solidarity in seeking disability justice.
Rukiyah Ghani: Rukiyah is a first generation post-secondary student whose experiences reflect the challenges and joys of both immigration and disability. Close in age, Rukiyah and her brother navigate their community together, as he faces both discrimination and institutionalization. Much of her knowledge and skill in disability advocacy is gained from this lived experience. An accomplished student, she makes powerful links between the classroom, community and professional practice. Described as “exceptional” by her instructors, she is serving as a member of School Council where we benefited from her gentle intelligence.
Laura Mele: Laura’s application came in with two shining letters of reference: one from the mother of a young woman who is designated Medically Fragile and with whom Laura has worked for 18 years. The other came from Dr. Chelsea Jones, an instructor in our program who writes that “Laura’s work revolves around the task of improving the lives of others – from small gestures to large strides in various fields of study.” A resident of Sarnia, Laura identifies as a disabled rural woman, and often pulls the geographic peripheries into class discussion. She is making her mark through participation on the Student Advisory Committee and relationship-building in its many projects.
DAVID: In its attempts to “change the conversation” around mental health, Disability Studies at Ryerson links social movement issues and actions with the fresh scholarship of Mad Studies. To mark my 70th birthday, some friends paid the tuition fees for someone to take Mad People’s History – the course that I helped to create and taught here for many years. That gesture has become a yearly ritual as has the involvement of Working for Change, the community organization from which the recipient is selected and where I am pleased to be a member of the board.
We regret to tell you that last year’s recipient, Adrienne Mageenis, passed away this year. Adrienne was a graduate of the Women Speak Out Leadership Training course at Working for Change and a passionate advocate on issues related to mental health. She participated on numerous committees and Boards of Directors for non-profit mental health agencies. She was very committed to furthering her education in the field of mental health. Our community misses her strong voice, perspectives and wisdom.
This year’s recipient is Desiree Bowen. Desiree is a graduate of En Route to Employment and is now working as a Program Assistant at the Centre for Addictions and Mental Health CAMH. She has a keen interest in Peer Work. Mad People’s History will provide her with a strong background and understanding of the history of the survivor movement.
Erin Poudrier: Erin graduated this Spring. In reflecting on her time in the program, she is most proud of her development as an academic writer. Her application included course papers on cultural representation, and bioethics, as well as her final independent study titled Precarious Terrain: Narratives of American Sign Language Interpreters. She explained that her disability consciousness “did not happen overnight. Rather it was a journey through reading and writing about learning” with feedback from professors that overcame her skepticism and uncertainty. Erin had the pleasure to get to know Helen in the summer of 2014 when they both took the community building course.” I am thrilled to accept”, she wrote. “I feel truly honored to receive this award in Helen’s name.”
Maria Teresa Larrain: A mature student in our program, Maria Teresa is a Chilean Canadian film-maker and community organizer. She has just released Shadow Girl, a film that follows her journey into blindness and her encounter with a group of blind Chilean street vendors from whom she learns a different way to look and to see. Maria spent several years making this film – some of it shot on the Ryerson campus during one of our summer institutes – and much of the past year in its international promotion. The film has been recognized by the Circle of Chilean Art Critics (Best Documentary), DIVA Film Festival (Best Film, Best Director, Best Sound), FEDOCHI Film Festival (Best National Documentary), DocsBarcelona Valparaiso Festival (Best National Film Audience Award), FIDOCS Film Festival (Audience Award) and the Vogyakarta Film Festival (Special Jury Award). We are so pleased in Emma’s memory to recognize Maria Teresa and to support her ongoing work.
Jerusalem Bete: A recent graduate of the Developmental Service Worker program at Centennial College, Jerusalem is looking to increase her knowledge and her impact as a worker. Member of a family who migrated from Ethiopia, she and a brother who is autistic grew up in the diverse Toronto neighborhood of Flemingdon Park. She knows the many challenges that racialized disabled people face in life. With educational challenges herself, she is keen to expand her capacities to support others.
Hedy Ng (not present): Resident of Markham, Ontario, Hedy works as an Adult Education Literacy Program Assistant. Unable to complete her early studies, she is now a single parent raising a son who has been diagnosed with ASD. She regained her educational pathway by taking any seminars or class she could find. Her path to our program began with the Accessibility Practices Certificate which, after seven courses, she used as a platform for launching into program admission. Great stamina, Hedy.
John Okot: Following his completion of the Developmental Service Worker diploma at Fanshawe College in London, John comes to us with a strong desire for further education and a broader range of job opportunities. Prior to returning to school in 2013, he drove transport truck for almost eight years – which was a living but one that did not allow him to make the kind of difference he wants to in other people’s lives. One of his long-term goals is to use the skills he develops to educate young people in his country of origin, South Sudan, Africa.
Ann Beatty: With connections to disability in her personal life and her job as a support worker, Ann enjoys learning new theoretical frameworks, risking challenging topics, connecting her coursework with her personal life and generally thinking through the complexities of how disability is understood in society. Since 2005 when she started the program, she has completed nearly all of the DST courses and is poised to begin her final independent study towards degree completion in April 2018. Having faced challenges as a working student, this award will provide very meaningful assistance to her in completing her studies.
Christina Devlin: Christina started her Disability Studies program in 2014 as a self-advocate who was running a support group for Autism Ontario (London chapter). Being a co-researcher on Esther’s parenting possibilities research introduced her to Disability Studies and this program has given her greater confidence as an autistic person living in a neurotypical-dominated society. Christina draws direct connections between course materials, assignments and her growing activism including leadership with a grassroots, intersectional, user-led, peer support and advocacy organization that is run collectively by autistic people. She is headed into Research Methods this fall, pressing towards degree completion and savoring a dream to work for the Ontario Human Rights Commission.
Adriano Aguiar – Life measured in feet: An arts-informed inquiry
Linh Chau – Illness and disability in the workplace: Living the organizational experience
Nadia Lembo – Disability as a story that connects us: Exploring the impact of narrative moments
Karine Roy – (not present ) Critical Discourse Analysis of InVitro Fertilization (IVF): “Your embryos are not grade A”!
Brittany Van Beilen – ABLLS-R Activated: The invisible connections within ABA: An institutional ethnography
This post was written by graduating student, Darlene Murrain.
From the beginning of my scholastic career in Disability Studies, I always looked forward to the Major Research Thesis Project. As I navigated through the core courses of the program, I became more and more intrigued with various schools of thought around inclusion, intersectionality and activism. I knew that I wanted to carry these themes into my final project. Choosing a topic for my final project was a daunting process but thanks to my supervising professor Esther Ignagni, she helped me narrow down my topic in a way that brilliantly captured all of my interests: Placing people with disabilities in the movement against anti-black racism movement using a Disability Justice lens. The aim was to look at various local activist organizations (e.g. Black Lives Matter Toronto) whose missions seek social justice for black people and to determine how disability is addressed in their organizing efforts. With approximately 60-80% of state violence victims being black people with disabilities, I felt committed. So my research question became: “How is disability taken up within the movement? This meant to explore representation, ableist assumptions about disability embodiment, the vulnerability of differing bodies without perpetuating that vulnerability, internalized attitudes of ableism within the black community, inclusive spaces, and creating alternate ways for people with disabilities who cannot take to the streets. During the research process, I had to be intentional about not criticizing or assessing the efforts of the community organizations to determine if they were successful. I just simply wanted to see how it was done.
The research methodologies I used were Ethnography and Discourse analysis. It was impossible not to place myself in the research as I am a black woman and there were moments when I experienced a wide range of emotions, especially when reading newspaper articles about state violence and discrimination against black people. I used these moments to interact with the material from a personal perspective as well as a researcher’s perspective. Ethnography permitted me this opportunity since it’s a research method that respects the research’s subjectivity and does not make the assumption that the researcher is separate from the research. Discourse analysis helped to complement Ethnography through exploration of discriminatory language and social concepts, which I did by locating our cultural understanding of the word “normal”.
I used many sources to collect information. I collected data not only from scholarly articles and informational interviews but I also read blogs, followed social media accounts, visited visual art exhibitions during Black History Month and attended community speaking engagements. Looking back, I believe I was quite over zealous because the amount of information I accumulated became really overwhelming at one point. However, I recognize that I did this because I had so little in terms of scholarly research explicitly on disability inclusion in the modern movement against anti-black racism. I really had to process and organize the data in a way that made sense to my research. I accomplished this by focusing on the shared experiences of black people and people with disabilities. Three concepts that stood out to me in this area that I would like to share are Consciousness, The Weather and Internalized Racism/Ablesim. They are defined below: Consciousness: This is idea of a social movement group and it’s members adjusting its way of organizing or its “conscious” to address the changing ways of systemic oppression. An example of this would be taking up an intersectional approach to black issues that include various identities, because not every one who identifies as black faces the oppression in the same ways.
The Weather: This is a concept shared by Canadian Poet and Documentarian Dionne Brand who has written about racism and state violence in Canada. She describes racism against black people as “the weather”. It is anti-blackness rooted in white supremacy and it is accompanied by the glance and the stare. She says just like the weather, racism is constant, casual and happens every day.
Internalized Racism/Ableism: This is when the individual feels inward hatred and inadequacy because of how society discriminates against them based on their identity. Also media representations can have a negative effect on the individual’s perception of self and contribute to their feelings of internal discrimination.
So back to my burning research question: Is disability taken up in the movement against anti-black racism? Absolutely! How is disability taken up? For the sake of this post, I will not go into extensive detail but from the articles I read, the organizations that I interviewed and the events and art exhibits I attended, serious considerations are made for black people with disabilities, whether visible or invisible, to participate fully in the movement. This can be anywhere from the frontlines to leadership roles to social media engagement to adding disability-related issues to the agenda. My analysis revealed that in order for the movement to be successful on a political front, the organizers had to consider the intersectionality of the multiple identities that claim blackness within the movement itself. Space is the top consideration when inviting people with disabilities into the movement, making sure it is accessible, inclusive and safe.
Black Lives Matter Toronto advocating for queer-disability rights is an example of the intersectional shift of consciousness to bring to the forefront the issues that affect everyone, not just people of colour. At the 2016 Pride parade, BLM-TO halted the parade to present a list of 9 demands to the head of the parade. Although the backlash from the media focused heavily on BLM-TO requesting the removal of police floats, what they failed to acknowledge were that 2 of the demands were requesting improved accessibility for queer people with disabilities and hearing impairments, which is awesome!
To conclude, I believe that the modern movement against anti-black racism has done a great job of being a intersectional model of inclusive and safe spaces as well as a platform for black people with disabilities.
I want to end with a quote from Feminist and Civil Right Activist Audre Lorde that says: It is learning how to stand alone, unpopular and sometimes reviled, and how to make common cause with those other identified as outside the structures, in order to define and seek a world in which we can all flourish. It is learning how to take our differences and make the strengths. For the master’s tools will never dismantle the master’s house.
This post was written by Melanie Panitch. She is a former director of the School of Disability Studies and is currently holds the John C. Eaton Chair in Social Innovation and Entrepreneurship.
Ten years ago, in 2007, while Director of DST, I signed an affidavit in a Charter Challenge (under Section 15 and the Equality clause of the Charter of Rights and Freedoms). See Carol Goar article from the Toronto Star.
The case itself addressed the differential and discriminatory impact of the Canada Student Loan Program, which we know as OSAP (Ontario Student Assistance Program ) on students with disabilities. The argument went as follows: Disabled students take longer to complete degrees, hence incur more debt than non-disabled students to get the same degree. This serves as a deterrent to disabled students from attending post-secondary education worried by a high debt load and how to pay it off afterwards given the uncertainty of finding work, yet, without degrees are in a further disadvantageous position in the job markets.
The wheels of justice are slow, and two weeks ago I was advised by the applicant’s lawyer, I would be cross-examined on my affidavit. In preparing for this cross examination which involved updating my knowledge about loans and grants – I found our many revealing things in support of the discriminatory impact of OSAP on disabled students. Alas I was not given the opportunity to “make the speech” I wanted at the hearing itself, but I can share in this blog some of what I learned.
The first big decision is whether to disclose disability. Registering with the student accommodation and support office and if eligible for OSAP (even for only $1.00) taps into some non repayable grants: Bursary program for up to $10,000 for learning supports (eg computer, accessible technology). Is it high enough for account for the wide range of supports required to succeed? There is also an annual $2000 grant for students identified with a permanent disability.
40% course load counts as Full Time status. But FT status at the University doesn’t translate to FT status for example Awards or bursaries that assist financially nor does it have the same meaning with ODSP which can be confusing. A 40% load also means less funding. There can be long wait times before the loans are approved, often held up until the required assessments arrive, and given wait time for appointments students may end up having to pay out of pocket for eg, first or last months’ rent, course materials etc.
Managing OSAP can be like having a full time career because there is a need for constant reporting. If you change a course load, add a course, withdraw from a course, do badly in a course, need some time away for eg episodic disability, OSAP monitors closely and adds or subtracts payment. A low grade in a course that indicates a lack of progress or success according to OSAP triggers a requirement for a letter and explanation. If that happens twice, you can’t take any more courses until you repay. Condensed courses, intensive courses are also confusing for OSAP. Lack of flexibility – a disability keystone – is an issue. Having to think about reporting at a time when health or disability related concerns are predominant is tricky to say the least yet missing the deadlines has an impact on loans and interest on loans.
There is an assumption of disability as monolithic – that disability is stable and physical and visible.
Students with disabilities who are not on OSAP are not eligible for work-study programs thus denying opportunities for acquiring work-related skills and experience to boost resumes.
A positive step has been instituted by charging tuition by course rather than by semester. However for student with disabilities taking more years to finish their studies means extra costs in a number of ways: budgeting for accommodation, travel and food over a longer period, a delayed period before entering the work force; some student ancillary fees are pro-rated though others continue to be charged.
Perhaps this can be the start of a conversation on how the impact of the student loan program has affected students and their studies. It is worth noting that the Ontario government intends to roll out a new financial aid program. A recent Globe and Mail article (Nov 29, 2016) reported it was redesigning the current system to “scrap a complicated package of grants and loans and tax credits and replace it with a singled program, the Ontario Student Grant…” Stay alert!
Hi, Everyone! I am Tobin LeBlanc Haley, the new Ethel Louise Armstrong Post-Doctoral Fellow in the School of Disability Studies. I am following in the footsteps of Dr. Kirsty Liddiard and Dr. Eliza Chandler. I have much to live up to!
I am a Mad-identified, white, cis-gender, normatively physically-abled woman. I came to Toronto from Fredericton, New Brunswick to do my doctorate in Political Science at York University and decided to stay. My interest in disability studies comes from my experiences and the lack attention to mental health care, Mad Studies, and the experiences of consumers/survivors/ex-patient/Mad folk within the field of critical political economy. Most of my research, therefore, is about mental health, specifically the political economy of mental health policy and the implications for people labelled mentally ill. My doctoral research critically assesses Ontario’s public mental health care system, retelling the history of psychiatric deinstitutionalization from a political economy perspective and interrogating the landscape of mental health care services in the province today during the period of transinstitutionalization.
As a post-doctoral fellow, I am focusing on my home province, which is often neglected in critical scholarship. Here are some facts about psychiatric services in New Brunswick that might interest you.
The New Brunswick Lunatic Asylum opened in 1848 in Saint John, New Brunswick (St.-Amand & LeBlanc, 2013). This asylum is often referred to as Canada’s first asylum or as one of the “first permanent ‘lunatic asylums’ in [British North America]” (Moran, n.d, n.p.).
New Brunswick was also home to the Restigouche Hospital which opened approximately 100 years after the asylum in Saint John (Vitalite: Health Network, n.d., n.p.).
Today there is a new Restigouche Hospital, a 140-bed psychiatric hospital in Campbellton, NB (Vitalite: Health Network, n.d., n.p.).
There is also a 50-bed psychiatric facility in Saint John (Horizon, Health Network, n.d., n.p.).
Psychiatric deinstitutionalization was not initiated in the province until the mid-to-late 1980s, well after many other provinces in Canada and during earlier expressions of neoliberalism (Government of New Brunswick. The Action Plan for Mental Health Care in New Brunswick 2011-2018, n.p.).
The mid-1980s was a unique time in New Brunswick politics. From 1987-1991, there was no real opposition in the New Brunswick Legislature as the Liberal Party, under the leadership of Frank McKenna, won all the seats (Desserud, 2015).
The Liberals remained in power until 1999, with McKenna as Premier until 1997.
McKenna implemented an aggressive neoliberal policy program (Desserud, 2015).
For my post-doctoral research project, I will be mapping the history of psychiatric deinstitutionalization in New Brunswick, focusing in particular on whether prevailing economic ideology played a role in the decision to implement deinstitutionalization in the 1980s, the form this process took in the province and the implications for ex-patients.
Processes of deinstitutionalization, while undoubtedly essential for the well-being of anyone who experiences confinement, have long-lasting impacts on where and how ex-patients live and how governments and the public frame the needs and entitlements of these groups. To date, these processes in New Brunswick have not been analyzed. I cannot wait to get into the archives, start talking to people and piece together the place-specific social, political and economic factors that led to psychiatric deinstitutionalization in the province, the immediate implications for ex-patients and the on-going implications for the c/s/x/m community today. I also hope to do some comparative work around de/transinstitutionalization across Deaf/dis/Abled/Mad communities.
So far I have only had the chance to meet a few students, but I am deeply impressed with the creativity and engagement in the DST community. I love all things related to intersectional feminism, archival research, radical social change and, of course, Dis and Mad Studies. Please feel free to stop by my office anytime or email me at email@example.com.
Desserud, Don. (2015). The Political Economy of New Brunswick. In B. Evans and C. Smith (Eds.) Transforming provincial politics: The political economy of Canada’s provinces and territories in the neoliberal era (pp. 110-134). University of Toronto Press.
St.-Amand, N. and LeBlanc, E. (2013). Women in 19th Century Asylums. In B. LeFrancois, R. Menzies, & G. Reaume (Eds.), Mad matters: A critical reader in Canadian mad studies (pp. 38-48). Toronto: Canadian Scholars Inc. Press.
This post was written by recent graduate, Carolyn Lee-Jones.
I always find the hardest part of any task is the beginning. Taking that awkward first step or action needed to propel me forward always brings with it a terrifying sense of anxiety. Today, I am here to talk about presenting my DST 99 project, Walking with Strangers:Mapping experiences of madness and space, to diverse audiences. But at the moment all I see is a sea of unfamiliar faces, strangers really. I close my eyes, take a deep breath and start walking…
Walking with Strangersemerged to make sense of a troubling situation involving someone I had been in a care relationship with experienced escalating mental health crises. The degree of stigma, lack of accommodations and responses to her distress was appalling. Witnessing these events led me to reflect on my own experiences of distress and struggles with a Mad identity. Guided by a Mad Studies framework, Walking with Stranger is an ethnographic study exploring how Mad People experience and negotiate social and geographical spaces in everyday life. Or more simply, discovering how Mad People are living in space. My research involved working with four Mad identified participants. Each produced 24-hour narrative diaries focussing on ‘thick description’ and participated in semi formal interviews. Most importantly to my research, I also went on go ‘go alongs’ where I actually walked with participants as they went about their regular routines and locales to get a sense of how they interact with their environments.
When I initially developed Walking with Strangers I didn’t give much thought about how I might have to alter my project to reach audiences from different backgrounds. Most recently I was challenged with taking the presentation I prepared for the Canadian Disability Studies Association (CDSA 2016) conference and turning it into something I could co-present with Dr. Kathryn Church to a Media Production class at Ryerson. Being immersed in Disability Studies, I had forgotten how foreign the concepts had been when I was first introduced to them. Presenting to the Media Production students, mental health as illness and the more common medical, recovery based models- these were familiar to the students. Mad as an identity and pride, never mind an entire field of study was far more difficult to grasp. Nevertheless, I did my best to present the bare bones of my project and its relationship to Mad Studies. By focusing on how I enacted ethnography in my project and what ethnographic research looked like on the ground level, I wanted to emphasise how ethnography is about living engagement. It’s awkwardness as well as connection and everything else in between still counts as data.
Based on the Q & A session which followed my presentation, the response to my project seemed mostly positive. The students had interesting questions about Disability and Mad Studies, finding participants and challenges working with mad participants. Some of the students shared discomfort with this kind of research which seemed only natural. I had similar reservations at first but I found that doing ethnography included my learning to face my discomfort and accept that ethnography is not necessarily a linear approach to research. Through ethnographic research I found that having to adjust, adjust, adjust was just all part of the process. In doing so, ethnography showed me alternative way of knowing and seeing the world by immersing myself in my participant’s experiences of their everyday spatiality’s. By presenting to the students I could show them that mad people can be researchers as well as participants. Maybe, even changing some of the student’s previous notions about madness. As a Mad researcher, I feel I was in a unique position both personally and academically to work from the inside out to explore complicated questions about everyday spatiality’s, madness and geography. My work was about people living in space and presenting to the Media Production students gave me another opportunity to show the other, every day side of madness. Reflecting, learning to present across diverse groups, I better understand the importance of being able to make my work accessible and share it with wider audiences to change how people think about mad people and experiences. Thanks for walking with me!
This post was written by Associate Professor, Eliza Chandler.
Beginning in January, Dr. Carla Rice and myself will be co-directing a seven year SSHRC-funded Partnership Grant called Bodies in Translation: Activist Art, Technology, and Access to Life. Activist art, as it is defined in this grant, is Deaf, disability, and Mad art, fat art, art made by aging/aged people, and Indigenous art produced by Ontario-based artists. This grant will animate the assertion that when non-normative artists have access to creating and exhibiting art, and when we all have access to publically engaging with it, that differently embodied and marginalized people achieve greater possibilities for living a fulfilled life and expanded recognition of having liveable futures. And in a culture in which D/deaf people, disabled people, Mad people, fat/differently-sized people, aging/aged people, and Indigenous people are recognized as living unliveable and undesirable lives, we recognize that the project of claiming vitality through activist art is nothing short of urgent.
Bodies in Translation brings together 40 university and community-based partners from across Canada and the UK. Tangled Art + Disability, the main community partner, will be the site of much of the grant’s artistic activity. We aim to help cultivate activist art and mobilize its social justice capacity through five research streams which will: 1) Create an open-access, accessible, and ever-expanding archive of activist art in Ontario; 2) Innovate new ways for technology to help create, exhibit, archive and experience art; 3) Facilitate the creation and exhibition of activist art; 4) Consider how activist art contributes to social justice by promoting new understandings of embodied differences, both through art and as artists; and 5) Develop free and accessible secondary and post-secondary curriculum around activist art which can be used within equity and social justice pedagogy.
The main research outputs of this grant will be an activist art archive co-hosted by the Canadian Journal of Disability Studies; the development of a standard and policy for making the arts accessible; activist art programming, performances, and exhibitions; symposiums, conferences, workshops, and publications about activist art; and a web-based knowledge platform wherein educators can freely access curriculum and curriculum development tools for teaching about social justice through activist art.
What this means for the Ryerson community:
As one of the two main university partners on this grant, the School of Disability Studies will be abuzz with research and artistic activity for the next seven years. The School will host many research symposiums— the first of which, the Aging/Disability Symposium will be held February 16th and 17th, 2017 and stay tuned for the second Cripping the Arts symposium happening in 2018. The School will also be the site of the grants Access the Arts Lab, a lab complete with 3D printers, iPads, video editing software, and new technology as it gets developed over the life of the grant that will help make art-making more accessible. This lab is free to use for students, artists, and community members, so feel free to pop by when the lab is set up next winter. The grant will also create a number of research assistantship positions for students, artists, and community members. If you are interested in one of these positions, please get in touch with me.
If you want to hear more about this grant or would like to get involved, please get in touch with me at any time: firstname.lastname@example.org, 416-979-5000 ext. 6200, office #523.
Looking forward to an exciting next seven years cultivating activist art at the School of Disability Studies!
This post was written by current student Robin Kellner.
Almost daily, my clients and I are stopped by curiouspasser-by’s who have numerous questions and who feel entitled to our personal information.
I understand that we stand out. It’s not common to see two people side by side, one telling the other about every visual and auditory stimulus in the mall, doctor’s office, or restaurant. But that is how some people who are deafblind live their lives, with someone travelling beside them providing access to everything there is to see and hear in the environment around them.
Most commonly, I am asked if my client is my parent.
A few weeks ago, my client was getting her banking done when the teller stops to ask “Are you her daughter?” When I passed the question along to my client, she snapped “No! She’s an intervenor.”
We both sighed as we left the bank, “It’s annoying. I’m not old enough to be your mother.” It’s true, not even by a long shot.
Curiosity is human nature, but I often wonder, if disability were to be removed from the situation, would people still feel inclined to ask such questions? I would never pull up a chair at a café and ask the two people sitting at the table how they know each other. By Torontonian standards, that would be socially inappropriate – not to mention that I do not give a crap how they know each other.
It may not sound horrible to be approached with questions, but could you imagine if it happened almost every day? Such inquiries rarely turn into thoughtful conversations promote awareness of deafblindness – they are flat out insulting.
The interview does not often end with me being asked if I am my client’s offspring. Again and again, we hear “Can she see?” or “What’s wrong with him?”
These quandaries are also always directed at me implying that the person views my client as invisible and unable to answer a question.
I am not advocating for a society of people who never talk to one another and ask each other questions, but I encourage people to think about their questions before asking them. Speak to the person you are curious about directly, regardless of their mode of communication, language, vision, or hearing, and ask yourself: Why am I asking the question? Without the presence of visible disability, would I still feel the need to ask the question at all?
On a recent shift at the dentist, the receptionist asked if my client was my father. When I relayed the answer along to my client – who took the time to explain the role of an intervenor – the response was: “so like your daughter.”
We were speechless – but offered polite chuckles as we walked out using sighted guide. Having never been in that situation with this particular person, once we got outside, I asked him how he felt about the question. His response gave me a new perspective to the scenario – he said that he should have asked the receptionist if the dentist was her mother.
It occurred to me that such questions are not only disrespectful to the person with the embodied difference; they are also patronizing to the intervenor and diminish our roles as professionals.
The receptionist at the dental office is a skilled professional who plays an essential role in managing the office and ensuring the quality of the patients’ experience. Intervenors are trained professionals who provide visual and auditory information to people who are deafblind, and are trained in various modes of communication, orientation and mobility, and much more. Sure, it could happen that a dentist could hire their child to work in their office, and a family member could be put in the position of intervenor if there is a need. But would you ever feel the need to ask the receptionist at a dental office how they are related to their employer? I would guess the answer to that question is likely no.
Why then, do people feel it is their right to ask me how I am related to the person beside me who is holding my arm, a white cane, or the harness of a guide dog? Is it because they are perceived to have a disability?
In reality, I could be their daughter, cousin, or I could even be their lover – but is it really any of your business?
This post was written by student Sharon Clegg-Lintner and Micki McIntrye.
“Well, Micki. What do you think??”
“That would be all right with me I guess. If it means a couple of extra dollars a month for me to spend, that would be okay.”
And that’s how it all started; the second half of taking a stand and pursuing a closure for all the lost opportunities in life and one that makes her feel more credible and dignified as a human being. Not that she ever discussed those twenty years of pain, abuse and hardship while living in four of Ontario’s Provincial Institutions.
Micki, whose birth name is Marlene McIntyre, had to re-live all those painful memories three years ago as we spent nearly seven hours with me and her Adult Protective Service Worker completing the most intimate details of her years of mental, physical and emotional abuse. She spoke of other horrors that had occurred to people she knew and lived with, surprised at herself for even remembering some of their names.
“You didn’t speak of those things when staff were around and you couldn’t help even if you wanted to. I did a couple of times and got smacked and locked in a room for it. Some people died, Sharon, and we didn’t know where their bodies went.”
I’m sitting here with Micki right now so she can be part of this submission, because that’s how it’s always been between her and I since we met. We share. I was redneck nineteen year old who got a summer job at the Ontario Hospital for Women in Cobourg. (Later known as D’Arcy Place) That was 1972. And we’ve been friends ever since. There are too many stories to elaborate on since then, but the most important aspect of our relationship was how hers, and others, humbled me into choosing my career path. She became family and the both of us struggled through many obstacles so she could obtain her freedom. I took on Community and Social Services in the late 70’s to get her released into the community of Barrie and she has lived a life to establish herself as a citizen there, not without consequences by any means, but as someone who always had a heart of gold, of which she gave while others took. But I was always there as her “protector”, providing choices and alternatives.
She eventually met and decided to live with her partner, Bob, and that was nearly over thirty-five years ago. She is quite emphatic to this day that she won’t share Bob with me! “You’re my sister, and he can’t come to our house to stay when I come home!” Even when Micki got really ill two years ago and I learned that her one leg had gotten so badly infected, she was hospitalized, she told me she didn’t want to worry me and that she had tried her best to do things on her own. That cost her the amputation of her leg, a decision she made by herself after we had tried for four months to save it. South Lake Regional Hospital in Newmarket sure got to know the both of us during those months, after they originally wanted to discharge her back to her apartment that was consumed with bed bugs! It wasn’t long before the medical professionals discovered that we were a team not to be pushed around because of policies!! We’ve come even a longer way since then. I was able to secure a place at a retirement home the next year for both of them and took on officials in Barrie. It hasn’t been a smooth road since then making sure she was getting the correct medical attention and prevention for her other leg. We learned of the first collective Class Action Lawsuit against the Province of Ontario and I made sure her name was on the list. The law firm of Koskie Minsky in Toronto were absolutely wonderful! Micki and I had to originally travel to Toronto for depositions, affidavits, motions and intimidating consultations with Ministry people. But Micki charmed them all! Her wit, humour and sincerity won them over. Plus, she absolutely looked forward to staying in the big hotels!
Micki received a substantial financial gift as a result of the first lawsuit. We were able to obtain a brand new electric wheelchair for her and as of last October, she and Bob have relocated to a geared-to-rent disabled unit apartment in Barrie. They had the most wonderful Christmas last year, with a proper Christmas tree, decorations and gifts. Although there have been some serious medical concerns with the both of them this last year, they are much happier.
Our final chapter enlisted by Koskie Minsky this past year, was Micki taking on the responsibility of being named as applicant for a second class action lawsuit, again against the Province of Ontario, for any and all survivors of the smaller provincial institutions before they were closed. We spearheaded this motion because Micki wanted to ensure that EVERYONE who was still alive and had gone through horrific experiences were also entitled to a better life. The day she had to appear in court this past April, she manoeuvred her wheelchair up next to the lawyer’s benches and got to speak to the Judge and let him know how grateful she felt and other survivors in the courtroom clapped when she did so.
Micki’s life long wishes were to see Alice Cooper, which we have done twice now at Casino Rama and she wants to go to Santa’s Village this summer, which we are planning. Micki comes home here to my farm more often now, and it is our hope that with continuing medical assistance, we can get her one leg stable enough to warrant a prosthesis, because that’s Micki — she never wants to give up on any possibilities in her life and don’t anyone tell her she can’t do something!