Based on her experiences in hospital settings, Rosina Isabella – a person with a disability in the Disability Studies program – found that many hospitals and outpatient clinics were not experienced in providing people with disabilities and invisible disabilities with the required assistance to have as seamless a visit as possible.
“We have different requirements depending on our level of disability however we deserve and want the same level of care when a patient in a hospital setting.”
The initial medical issue that brought Rosina to the hospital was handled quickly and efficiently. However, many other aspects of her overall care were not adequately addressed – items such as re-positioning in bed regularly, ensuring that she was always comfortable, and had access to food (not just a tray placed somewhere out of reach). Hospital staff were not trained or aware of these things so crucial to her. This lack of understanding of her needs significantly affected Rosina’s ability to get well quickly and return to the community.
So, a mission was born! To build awareness and share the experiences of persons with disabilities, Rosina created an innovative research project – using a simple survey – to collect as much information as possible about the experiences of persons with disabilities in healthcare settings and how well their overall care needs are understood and addressed by health care personnel.
Raising awareness
Ideally, when shared with healthcare providers, her initiative will improve their understanding of the great diversity of care needs of their patients and result in increased awareness, and a commitment to address all of those needs.
For example, if a patient has difficulties communicating, does the healthcare facility have trained staff (including sign language specialists) who can make sure that the patient can communicate clearly with doctors, nurses, and other staff – both to explain their needs and to understand what the healthcare facility will provide them in terms of care?
The importance of creating and following a plan
Key questions for any healthcare facility are: Do they create a unique plan to address both the medical issues presented and this patient’s other needs during their stay. How well do they follow up with the patient to ensure that all their needs are being fully met daily?
Taking personal action
So how can you get involved? If you are a person with a disability – visible, invisible, or both – and have received treatment in healthcare facilities – during in-hospital stays, visits to emergency rooms, treatment at community clinics, etc. – would you be willing to complete a short survey to capture information about your experiences while receiving treatment?
Through Rosina’s research project, we seek to capture the experiences of as many persons with disabilities in healthcare settings as possible and provide feedback aimed at helping healthcare providers to understand the needs of patients with disabilities and serve them to the best of their abilities.
The information you provide will be analysed and may be shared with the healthcare facilities (aggregated and anonymous). This will hopefully lead to better support systems and an improved experience when persons with disabilities seek medical help.
For more information, see the research project flyer. Also, do not hesitate to reach out to us if you have more questions or would like to discuss your experiences with this
Thank you for your attention to this request. We hope you participate in the project survey and reach out to us directly if you have more questions. Sincerely, Rosina Isabella risabella@ryerson.ca and Paul Benson paul.benson@ryerson.ca
Lauren Munro has been selected as the newest Limited Term Faculty (LTF) in the School of Disability Studies at X University. She recently sat down with Tiffany-Anne Stones to chat about her trajectory to Disability Studies and what she is looking forward to this year.
While Lauren Munro may be unfamiliar to the core students within the School of Disability Studies, she has been an instructor in the department for the past two years, team teaching DST 500: A History of Madness. Lauren describes herself as “a mad scholar, an artist, an aunt, a daughter, a partner, and a friend,” prioritizing her relationships in the way she moves through the world.
When asked about how she came to the field of disability studies, Lauren shares a bell hooks quote from Teaching to Transgress:
“I came to theory, when I was hurting, when the pain within me was so intense that I could not go on living. I came to theory desperate, wanting to comprehend what was happening around and within me… I saw in theory then a location for healing.”
(p. 59)
Explaining how the quote “profoundly resonates with me in a kind of retrospective way,” Lauren confides that her discovery of mad studies in the early stages of her academic career – through the Mad Students Society – was a balm for the isolation and alienation she experienced related to her madness and her interactions with the psychiatric system. At the time, she was working on her undergraduate thesis in the psychology department at Laurier and decided to focus on mad students’ experiences with stigma and discrimination. She quickly realized that she “…wasn’t going to be theorizing or thinking this [topic] through in the way that psychology typically would.” This began her formal engagement with writing and theorizing in disability studies and mad studies – a passion that would continue to grow and inform her work moving forward. For graduate studies, she made her academic home in community psychology, which is an interdisciplinary field that takes a social justice-based approach to issues of community health and well-being. In addition to its social justice orientation, she was drawn to the field due to its emphasis on community-based research, compatible with the “nothing about us without us” ethos of disability activism.
Lauren has since been involved in a wide variety of projects focused on the health and well-being of 2SLGBTQ+ communities, body diversity and weight stigma, disability justice in arts-based research, transformative approaches to mental health, sexual health service access for women with psychiatric disabilities, centering service user epistemology in medical education, and issues related to sexual health and HIV vulnerability. Talking about the threads that connect her scholarship, she says her work “…interrogates the idea of there being an ideal body or mind.”
On the teaching side of things, Lauren has extensive experience in a variety of classrooms. Beyond teaching DST 500 at X University, she has taught courses on research methods and community partnerships, and how critical theories can be used to inform the development of social interventions at Laurier. She has also designed, developed, and taught a mad studies course to psychiatry residents at the University of Toronto for the past five years, alongside Lucy Costa of the Empowerment Council. She does this educational work with the goal of contributing to transformative change that tangibly benefits mad community.
I am passionate about teaching and learning and am really excited to get to know the students in the program, and to learn and work alongside them.
Reflecting on her life outside of academia, Lauren shares that part of what keeps her grounded is maintaining some sort of arts practice, whether its zine-making, mixed-media collage, gifts for her nibblings, or simply adorning her planner. Just as important has been staying connected to community, activism, and peer support outside of the confines of traditional medical and social service models. During the pandemic, her primary company has been her partner and a badly behaved cat named Stan.
In her new position, Lauren is keen to connect with the exceptional scholars within the program. Looking ahead to the 2021/2022 academic year, Lauren will be teaching DST88 and DST99, in addition to DST500. When asked about her approach to teaching, she highlights the importance of “…making space for people who have been harmed by academia, who have been traditionally left out, or who have been taught that it is not a place where they can think, learn, and theorize.” She is looking forward to getting to know students in the program and finding ways to support them to do the kind of work they’re passionate about. While she doesn’t have a physical office at the moment, Lauren encourages students to drop by online, reach out to say hello or to share their curiosities. Acknowledging that academia can reinforce hierarchies that make it hard to send that first email, she shares her hopes around making connections, saying, “…whether it’s sending a late-night email, or really just pressing send on one you composed hours ago,” she can’t wait to hear from you!
Image Description: Screen still from Hedy Ng’s video “Lonely Crane’s Mourning Song.” An interior shot of a side table with a wooden top and metal legs and bars on the side is seen from the top down, at a slight angle. There are four folded white paper cranes resting on the table. The floor is brown carpet.
The following is an excerpt from Hedy Ng’s DST 99 thesis work. It has been edited for clarity and length. In her words:
“I’m a little weirdo who has never belonged. The similarity of this theme of displacement has always resonated throughout the disability community. We have never really belonged. I wrote a long story about this and that is my thesis in a nutshell.”
Last year, when the global pandemic found its way to Ontario, our organization was hit really hard. Just before Easter Weekend, 2020, we went into an outbreak, and we had many front-line staff walk off the job. Only a handful of us were left to care for the residents of our facility, members of management, who all (including our executive director) took on front line roles, program staff like myself, who took on PSW roles, and a couple of PSWs. I left my autistic son in the capable hands of my aging parents and volunteered to work as a PSW on night shifts, because none of us wanted to leave our residents and our home in the hands of agency strangers.
I actually had my tent with me and lived in an office space, serving on night shift for four weeks before I finally got sick and was sent to a hotel to recover. It was during this time I was off that I made a few videos and wrote the first couple of sections of my COVID story, trying to process my experiences. I was really sick for nearly two months, and still experience residual symptoms – COVID completely turned my world around.
That story of my experiences became the backbone of my final project. I extended my narrative to the end of 2020 and wove in disability studies commentaries throughout the paper as footnotes, where I analyze my thoughts, word choices, events, circumstances, and issues that came up. My final project became a short, critical novel. An autoethnography.
Perhaps the most meaningful outcome of writing in my journey has been to process thoughts and thought patterns, learn and understand, and begin a shift in thinking away from a purely medical-model-based type of processing. Covid and this final project changed a lot about me and my thinking: I used to be a very traditional, methods-based, give-me-an-outline-to-follow-to-complete-my-tasks-in-the-most-orthodox-fashion-imaginable person.
Many of the opportunities I have had to write more creatively in my academics, I have used to record different observations about power imbalances, oppressions, and ableism in the interactions I encounter each day (both in my work and in the larger society). In DST 99, I have finally used my writing to turn my observations inward, to myself, my thought patterns and behaviours, and my internalised ableism.
Here is one of my favourite excerpts, or a little story from my project, when I was at the hotel and feeling alone and struggling with my identity:
Over the next week, I fought with my body, desperate to be back at work. Sitting alone in the room, I felt impotent. I felt useless. I felt what I imagined wounded soldiers felt when they were sent home in the middle of a war, away from their brothers and sisters in arms. Like I was abandoning them. I felt beaten, like I had failed. I felt weak. I felt only brokenness.
My pride was busted. My confidence was shattered. And I was intensely angry with my body – further incensed that even taking Tylenol did not always seem to help.
I never medicated.
I hated how long it took me to shuffle down the hall just to enjoy a few moments outside.
I hated the short list of things I was physically allowed to do:
Breathe. Walk. Hydrate. Sleep.
The only solace I found was that in spite of continually being told I could not quite return to work yet; I could still follow orders and not sneak in – though there was one morning I wrestled with the idea for over an hour before I convinced myself that being able to follow orders was all I had.
I felt alone again. Alone, with my broken body that would not obey the orders my mind was giving.
Video by Hedy Ng, titled “Lonely Crane’s Mourning Song,” music is “Brave” by Sara Bareilles.
COVID-19, Online Learning and Impact on Single Parents
By Pauline Wangari, January 2021.
Source: Adobe Stock. Image Description: A photo of a parent and their child working at a table together. The parent is covering their face with their hand, while the child is writing on a sheet of paper next to a laptop.
This blog post was written in January 2021 during a wave of the novel Coronavirus. It has been edited for clarity and length.
COVID-19 numbers are on the rise with each passing day and so are the reported number of fatalities. More than 1.575 billion students in approximately 188 countries around the world are reported to have been affected by the closure of learning institutions due to preventive measures taken by countries against the spread of COVID-19 (UNESCO, 2020). Due to isolation, the use of technology has been considered the most appropriate (if not the only) alternative to keep educational systems functional in many countries during this period.
In this blog post, I explore the mandatory online learning which has left single parents with impossible choices in Toronto, Canada.
COVID-19
The pandemic has affected all areas of life, including education. As the situation worsened, the global lockdown culminated in a lockdown of educational institutions. This closing of schools, colleges, and universities resulted in a stressful event for educational administration with highly limited options.
The closure of educational activities around the world as a result of the ongoing COVID-19 pandemic caused an unplanned shift from traditional learning to a setup that almost exclusively involves digital teaching and learning.
Source: World Economic Forum Image Description: A photograph of an empty classroom with children’s art on the walls and many unoccupied desks.
Online learning has been widely promoted to replace traditional face-to-face learning during the COVID-19 pandemic. This shift has an immediate and long-lasting effect, particularly for more vulnerable and disadvantaged communities. In my research, most parents generally had negative beliefs about the values and benefits from online learning and preferred traditional learning in early childhood settings. They tended to resist and even reject online learning for three key reasons: the shortcomings of online learning, young children’s inadequate self-regulation, and their lack of time and professional knowledge in supporting children’s online learning. The implementation of online learning during the pandemic has been problematic and challenging for most families as they were neither trained nor ready to embrace online learning.
Covid-19 Impact on Single Parents
Source: Canadian Women’s Foundation
The pandemic has intensified the economic barriers that women are already facing throughout Canada as research suggests that pandemics can take a higher toll on women’s income as compared to their male counterparts.
Women constitute up to 60% of those in Canada that are “economically struggling,” meaning that they report difficulty in affording their basic needs. Following the travel bans, layoffs have predominantly hit industries with a greater proportion of female workers. These include those in the hospitality and travel industry. In Canada, 80% of single-parent households are led by women, who are overwhelmed with working and taking care of the children at the same time.
Covid 19 is a disaster for feminism. Most likely, the partner who makes the least money, generally women, will absorb most of the caregiving.
Some of the challenges single parents are facing include the following:
1. Economic Strain
There is an additional economic strain on single mothers in the move to online learning. Many of these parents are not able to afford the devices and internet that their children require so as to be able to participate in online classes. Some of these parents have had a change in their employment status where some were laid off and others furloughed. Without expensive high-speed internet, they simply aren’t able to support video calls on programs such as zoom.
“Classes are conducted on specific timings, so we have to be available with the internet at any cost, it’s difficult when we have more than 2 kids at home going in the same school having classes at the same time.”
COVID-19 crisis has reinforced social inequality in education as represented in schools.
2. Priorities and Balance
Even though parents now have more time with their children, the pressure to juggle multiple tasks is stressful. Mothers felt overwhelmed by having to help in their children’s education and at the same time manage house chores.
There is a notable struggle to balance parent employment demands and learner needs while struggling to assist multiple children in the home with learning. A lack of personal, work, and parenting balance has turned out to be overwhelming.
3. Balancing Multiple Levels of Learners in Home
It is difficult to balance multiple child learners in the home. As one mother described this struggle, “try to help 2 kids at once with different subjects and who are at different grades.”
4. Insufficient Space
Homes now have to function simultaneously as schools, offices and living space. A single mother may not be able to afford a large apartment and may live in smaller, more affordable spaces. This has left them in a bind.
5. Difficulties in Keeping Children On Task
Many children are considering this time as a vacation from school, and they want nothing to do with a normal school-like routine. Instead, they want to sleep and wake up according to their own wish and spend the rest of the time playing video games and watching cartoons/movies. It is difficult for many parents to keep children focused on their educational tasks, which can have repercussions on their social, educational, and physical development.
6. Disability Accommodation Challenges
Another barrier that has been cited by single mothers was supporting disabled learners. There is a struggle to meet the disability-related needs of their children during COVID school closure. A parent of students with learning disabilities shared the following:
“My biggest struggles have been in working with my daughters (grades 3 and 5) who struggle with learning disabilities (dyslexia and ADD respectively). I am not equipped to try to teach them material and both struggle with organization and focus. This has resulted in several long days when the guidance from their elementary school has been that work should take approximately 1 hour to complete daily. In reality a normal day is 3- 4 hour and some are 7-8”
What then needs to be done?
Parents, especially single parents, need the right kinds of support from teachers and schools. They need teachers and schools to realize that they are barely able to make it through each day and are doing their best to support students. Without support and even acknowledgment of their feelings, they will not be able to maintain a healthy mental and emotional status or support their children to do the same.
This pandemic will soon pass. The true test however is how mothers, and parents in general, are able to navigate around it and help their children remain positive and healthy. This is a time for love, care and support as parents strive to help their young ones grow.
Chang, G. C., & Yano, S. (2020). How are countries addressing the Covid-19 challenges in education? A snapshot of policy measures. Retrieved from World Education Blog: https://gemreportunesco.wordpress.com/2020/03/24/how-are-countries addressing the-covid-19-challenges-in-education-a-snapshot-of-policy-measures/
Dai, D., & Lin, G. (2020). Online home study plan for postponed 2020 spring semester during the COVID-19 epidemic: A case study of tangquan middle school in Nanjing, Jiangsu Province, China. Best Evidence in Chinese Education, 4(2), 543- 547. 4. Women’s Worry Work in the Covid 19 Pandemic
Black, E. W. (2009). An evaluation of familial involvements’ influence on student achievement in K-12 virtual schooling. [Unpublished doctoral dissertation].
Giannini, S., & Lewis, S. G. (2020). Three ways to plan for equity during the coronavirus school closures. Retrieved from https://gemreportunesco.wordpress.com/2020/03/ 25/three-ways-to-plan-for-equity-during-the-coronavirus-school-closures
Mehmish, Z. A., Ahmed, Q. A., Schlagenhauf, P., Doumbia, S., & Khan, A. (2020). No time for dilemma: Mass gatherings must be suspended. The Lancet, 395(10231), 1191- 1192. doi:https://doi.org/10.1016/S0140-6736(20)30754-68
Originally posted for the Hidden City Blog Post assignment in DST 501
It had been a long summer; a summer of changes and a summer of success. On that last day of school in June 2017, our five-member family moved out of our home located in our rural community into a 30-foot trailer on the lake. We were moving to the country located twenty minutes from town however first, we needed to build our home.
Hudson was four years old and would be transitioning from daycare to school. His daycare was instrumental in his learning and care; the teachers came alongside us when he was diagnosed with a rare genetic disease. Leaving them behind was like leaving a pillow and blanket, our comfort and familiarity. Hudson would start school in the fall. Would he be accepted? Would he be invited to birthday parties? Would he die while a student at this school?
The hole was dug, walls formed, and the first nail went in on Canada Day weekend. My husband built our home in record timing; he ensured we could be in our new and accommodating home for the fall. Everything worked out seamlessly and on October 30th we moved into our new home, fully finished top to bottom.
School was perfect for Hudson; he was loved, adored and all the children wanted to play with him. My heart was filled with joy however cautiously reserved for that moment when Hudson would not be popular anymore, after all it was Junior Kindergarten.
Shawn and I believed taking the children on an adventure would be something we could all benefit from; after all, the girls hardly complained during the summer, we were busy building, planning, and finishing a home, and school had been a success so far. One of the few activities Hudson could keep his focus on was hockey, and we were ecstatic that our team, the Pittsburgh Penguins, would be playing in Ottawa. Shawn and I booked the afternoon off on November 16th so we could take our time to drive to Ottawa, have supper, and find the best place to park. Of course, a hockey game would not be a hockey game without the five of us wearing our Penguins jerseys in a sea of Senator fans.
Before the game started, we went down to the ice to watch the players warm up. The smile and excitement on our children’s faces made me forget that one day our life will look different. In that moment, we were the Hills on an adventure ready to catch a glimpse of ‘Syd the Kid.’
I left with Hudson just before the first hockey period was over; every woman knows to beat the rush and the lineup at the bathroom, you must sacrifice missing a bit of the game. Success! No line up!! Hudson and I walked hand in hand while I carried his diaper bag. I stopped and looked anxiously at the change table built for an infant and toddler in the direct line of women that were coming in behind me. The builders placed the change table on the wall in between the washroom sinks and the door. I could feel my anxiety rising. The hockey period was over, and it was getting busy in the washroom. I lifted Hudson onto the table, and I observed the table fall further toward the ground. I could feel the physical stress and anxiety in my body, the table that marginally fit Hudson lengthwise, now appeared to be unfit to hold Hudson’s weight. I attempted to take my things out to change Hudson however I was worried the change table would break. I looked around and found the accessible washroom; we went into the stall and as I shut the door, the tears fell down my cheeks. I found his one-piece pair of pyjamas in the diaper bag and laid them on the floor and then placed Hudson on top of them. I proceeded to change Hudson’s diaper on the floor of that bathroom stall. The anger, worry and anxiety shifted to tears of sadness, helplessness, isolation, and fear. I gathered my belongings, picked my son up off the floor and excitedly said for Hudson’s sake, “let’s go see Crosby.”
In my mind, body, and heart, I was utterly crushed with despair. That change table told me the world around says I am defeated, unworthy, and embarrassing. It further told me that my son was not valuable enough to be a consideration in this harsh world. It was a reminder that the spaces and places I will take my son moving forward in life, as he further declines in cognition and mobility, will be conceptual ideas based on the ‘normal’ person. “Ableism is connected to all of our struggles because it undergirds notions of whose bodies are considered valuable, desirable and disposable.” (Mingus)
I returned with Hudson to our seats. He sat with a smile on his dad’s lap intently watching the hockey game I knew he would love. I bought those tickets for that exact moment for my family, for the joy of being together, and providing everyone with a memorable experience. I sat for the duration of the game with a different memorable experience.
I identified with Ryan Knighton in his podcast “Baby Steps” on This American Life when he said, “Out of her came a glee so powerful enough to start my heart again. A laugh like I’ve never heard before.” In other words, even though my son was treated unjustly and it broke my heart into further pieces, I was relieved when I saw the joy in Hudson’s face when he returned to his seat. Likewise, Ryan taking his daughter for a walk, he was surprised and relieved to hear the laughter from his daughter but the podcast ends with the SUV driver saying, “You should be careful, he said from out the window, and sped away.” This statement leaves Ryan and I both understanding that ‘at the end of the day’ disablement is still our reality.
“I imagine a world where our organizing and activism is less segregated, where our movements and communities are accessible and don’t participate in the isolation of disabled communities. I imagine places where we fight for whole and connected people, families and communities.” (Mingus)
An infant/toddler changing station fastened to the wall, table portion of this station is unfolded and is suspended in the air, ready to place a child on it to be changed
Image Description: A photograph of Idil taken outside in front of a building wall of cement blocks painted purple with street art of a racoon reclining on top of a car holding a bat. Idil, a Black woman, leans against this wall, one leg bent against it. She is wearing a wide brimmed black hat, large black sunglasses, dark red lipstick, gold earrings, a black dress with a ‘V’ neckline, and black shiny leggings. She has on tan heels that match a rich tan coat with her hands in the pockets.
The following conversation took place in September 2020 between Amanda Lin, Student Engagement Facilitator, and Idil Abdillahi, new School of Disability Studies faculty member. It has been edited for clarity and length.
Amanda: Idil, welcome to the School of Disability Studies! Congratulations on your success and becoming the Advisor to the Dean on Anti-Black Racism in the Faculty of Community Services. I’m super excited to get the opportunity to interview you and introduce your work to our students, alumni, and readers. Tell us a little bit about yourself and your life.
Idil: Thank you, I used to work in the School of Social work and now work at the School of Disability Studies. I am cross-appointed in Social Work but my ‘home’ is here in Disability Studies.
To introduce my work to students, I would like to say that I have always been part of a care community and that this community is very important to me. I have been a practitioner and a person who works and supports people for almost two decades. This work has been in a wide range of services and supports, including hospitals and larger carceral institutions around ‘care’. Furthermore, my work is and has always been located in grassroots activism.
Over the years I’ve worked extensively with mad identified people, primarily in the carceral system. I come to Disability Studies with a particular kind of expertise around understanding the Ontario Review board, issues around the title of Not Criminally Responsible, and discourses in both criminality and madness. In particular, I’m interested in the ways in which these systems are deployed against Black people, either by overuse or abusive-use.
Amanda: I think you’ve touched a little bit on this, what led you to your academic work? And can you tell us a little bit about your academic journey or background that led you to disability studies?
Idil: While I continue to develop a background in socio-legal knowledge, I am interested in legal issues for mad identified people as they pertain to sentencing, the securitization, and the ‘management’ of mad identified people within institutions. I want to pay particular attention to the way these issues affect the people who we do not see, the people that are left behind and locked away, who activism and activists cannot readily access unless you are within those systems.
My journey to disability studies does not begin in the context of the academy. For many of us who are on the peripheries of formal education, we do not come to these places by just learning about them. We actually come to them by virtue of something else, that has been lived through, known. Oftentimes, we are already doing the work but just need that piece of paper to be really clear. I come to the university by virtue of the realities of BlackLife, one word, not two, [laughs] my BlackLife and that of others, who I’ve had the privilege of living and being alongside.
Editor’s note: In their bookBlackLife: Post-BLM and the Struggle for Freedom, Idil and Rinaldo Walcott define the term BlackLife as words necessarily joined, saying “living Black makes BlackLife inextricable from the mark of its flesh, both historically and in our current time.”
Disability studies cannot be separated from BlackLife in my work. I’m a Black Canadian studies scholar and being a Black Canadian scholar ultimately is a direct challenge to ideas of discipline rigidity. My writing and research is not just within social work or disability studies because BlackLife cannot be contained within any one discipline. BlackLife happens everywhere and all the time and part of my work is challenging discipline rigidity in these fields [while some white mad scholars want to debate this].
Therefore, I do the broad work of Black Canadian studies and within that work there are multiple prongs including disability studies, policy, and issues around the sociopolitical legal system, women, systems, and institutions. Even some of my writing work, where I am starting to write about art, television, and music, is within Black studies. This is to say that as a Black scholar, I entered disability studies by understanding the ways in which disability has been mapped onto Black people and ‘bodies’, regardless of formalized ideas of being disabled.
Ultimately, I come to disability studies with a commitment to the freedom of all of us. I also came to disability studies by way of interacting with my colleagues in the School of Disability Studies working at Ryerson (DST). I have been observing the scholarship of Eliza [Chandler] and Esther [Ignagni], and the work of several of our staff and postdocs, for some time. I felt an alignment in seeing and interacting with the School. Over the last few years, through interacting and getting to know the people working in DST, I felt a real value for the scholarship and activism I was creating within my previous School of Social Work. More so, DST does not just visibilize the importance and worthiness of my scholarship but provides tangible support by examining its meaning in their own work. From my perspective, the people at DST are interested in doing this work alongside me.
Amanda: My understanding is that you are one of the founders of the Black Legal Action Centre, can you tell us about your work there? And can you tell us a bit about your podcast work?
Idil: Yes. I am one of the founding members of the Black Legal Action Centre, the only legal clinic in Canada that works and focuses on the issues of Black people, specifically issues of anti-Black racism in the context of larger policy related cases.
As for podcasts, a colleague, Prof. El Jones, and I developed a series during Covid called No Life Left Behind. This podcast, like anything else I do, was born out of a gap. In my ‘work’ with lifers in prison, many of us across the country were doing advocacy at the provincial level around releasing incarcerated people during Covid. The podcast is attempting to complicate questions around abolition and defunding. All of the podcasts were co-hosted by lifers who participated along with academics, activists, scholars, and researchers across Canada.
Amanda: How are you going to bring all this work to your new role as the Advisor to the Dean on Anti-Black Racism?
Idil: [laughs] It’s not lost on me that institutions often have neoliberal responses to sociopolitical circumstances and/or often to critique. I need to be able to name that while also being excited and looking forward to this new role. However, people have to understand the limitations of it, as a one-year contract position. Given the mechanics of the way the academy, or any institution, works, we all have to be realistic about what can be expected and accomplished in a one-year period of time. In terms of what it means to be an ‘advisor,’ I am not changing anything about what I was doing prior to this role. I will continue to be the person I was before and have the same investments towards BlackLife and freedom. This role doesn’t change my commitments, the person that I am, my comportment, or the way in which I challenge the institution. Perhaps, all it does is acknowledge my time for doing this work and all the suffering that I endured and continue to endure as a result of this role.
Part of my role within the next year is to support and challenge FCS in their anti-Black racism work. I’m not and have never been known to be a quiet person or a person who is afraid. I believe that some of our most meaningful changes and relationship building can come out of conflict.
I think that part of what this new role offers are possibilities for particular kinds of access for students, faculty (who decide to participate), and for FCS to make relationships with community members. Now that Dean Barnoff has announced she will no longer be dean moving forward, my hope is that this work continues regardless of who is in that role. As such, a part of this work is to register my concern around the lack of sustainability for this advisor role. I implore FCS and the institution to think about what this lack of sustainability means for completing the current FCS action plan, and how that work should not end with the tenure of Dean Barnoff.
Another important aspect of being Advisor to the Dean on Anti-Black Racism is to be clear that Black studies is not specific to a discipline. Issues of Blackness and race cut across disciplines, and we need this scholarship to be able to do this work. In Black studies, we are creating the ways in which having an analysis around Blackness, anti-Blackness, capitalism, colonialism, imperialism, and every other form of interruption can create possibilities. These learnings enrich our classrooms and the social world through our graduating students. They have not only had an excellent experience within the institution but have learned the critical content that is required to make shifts within their respective fields of the nine schools in FCS.
Amanda: Can you tell us about some of your interests and inspiration?
Idil: I am hugely into TV and pop culture. I watch horrible stuff and I love it. I am interested in writing about ideas of ‘reality’ in reality television and the ways in which we engage ‘reality’ in the context of surveillance. In particular, I want to examine how surveillance and its interactions with lust, desire, relationships, Blackness, and queerness are all taken up in these contexts.
I am a big music fan, and I love old school R&B and hip hop. I am also inspired by many Black Canadian artists who are doing amazing work.
A colleague of ours at Ryerson, Prof. Abdi Osman, creates work that is phenomenally reflective of my own kind of living, personhood, and aesthetic around Black Queer Muslims.
[In September 2020], a song just came out by Toronto-based artist, Mustafa, called Air Force. Mustafa is an artist and public intellectual who creates radical music of love that centers a Black critical Muslim perspective.
I also want to draw attention to another young Black woman, Farxiyo Jama. She uses her radical artist practice and work around mental health to center Black women. I continually learn from her courage and creativity.
The following interview took place between Amanda Lin and Eliza Chandler in September 2020. It has been edited for length and clarity. The interview begins with a discussion of Eliza’s newly awarded SSHRC grant on accessibility in the arts and then we get to hear about her recent Royal Society of Canada appointment.
Researching Accessibility in the Arts
Eliza: Yes, absolutely. The question we’re asking is how does access change, specifically in the arts, when we start with the expertise, experience and politics of disabled people?
It’s wonderful to see so many arts organizations begin their journey towards making their programing accessible and showcasing disability artists. But for all kinds of reasons, the ways that organizations approach accessibility is through what we so often refer to in disability studies and activism, as a checkbox approach of, ‘ok the show’s in two days, what ASL interpreter is available?’ Increasingly, what we’ve heard from the crip communities of artists and arts audiences is that this approach does not work and that there is knowledge in the disability, Deaf, and mad community that is not being resourced.
“how does access change, specifically in the arts, when we start with the expertise, experience and politics of disabled people?”
I did a series of mini-consultations before putting together the grant and we heard a sort-of annoyance, for lack of a better word, or curiosity perhaps, at how arts organizations put together their access plans. Oftentimes they invest a lot of resources and work with skilled access providers. But still, their access plans aren’t as effective as they could be. For example, there might be a whole theatre festival of programming and only one play on one night has ASL interpretation. Respondents considered that it might be too costly to have ASL interpretation for every event but questioned why non-disabled theatre producers are choosing which show becomes interpreted, when that show is, and who the interpreters are? So, in this example, working with Deaf people to design your access would be really beneficial. They can create a team of skilled ASL interpreters, make sure the interpreters have the script well in advance to properly rehearse, consult with the Deaf community to choose a particular play of interest, and ensure that the performance date and time doesn’t conflict with another (or many other) Deaf and/or ASL-interpreted cultural events. This narrative highlighted for me that when you have Deaf, mad and disabled people creating and enacting access plans, you arrive at different, more effective, practices.
In another consultation, Alex Balmer, a blind theatre artist, talked about how, for her, wanting to go to theatre shows might require someone to come to pick her up at her house and bring her to the show. We’ve heard similar what we might call ‘access dreams’ from other people that might be unfamiliar with theatre culture. For those people, someone accompanying them to the theatre can then help them navigate those awkward moments in between arriving at the theatre and waiting for the show to start. I think it can be ableist to assume that everyone can easily navigate social spaces, that they know where to hang up their coat, who to chit chat with, and all the rest.
Inspired by these consults, this project is interested in how access practices change when they centre disabled people and politics. This grant will work with people from our Deaf, mad and disability communities in co-design workshops focused on developing practices for putting together access plans around what we might call ‘crip cultural practices. We are also trying to figure out how to put in place accreditation so that participants receive a certificate upon completing these workshops demonstrating that they are trained in disability-centered designs for accessibility. Our hope is that such an accreditation will be useful in finding employment opportunities to do this work across the arts and cultural sector.
Amanda: Who are your partners in this grant?
Eliza: Creative User Projects, a disability arts community organization with whom I work quite closely. Creative Users has started a new digital strategy project wherein they are building a digital platform, a website, called Accessing the Arts. This website will connect people from disability, mad, and Deaf communities with calls for participation, training, and networking opportunities, and accessible arts and culture events in Canada. Right now they are piloting this project through their Connector weekly listserv. This is my go-to source for all things disability arts and culture. I’d encourage everyone to sign up through this link!
The work that Creative Users is doing shows how important communication is to the effectiveness of accessibility and access plans. For example, if you’re a blind person and there is offered audio description at a theatre performance, you might not find out about this event because of the theatre company’s historic lack of accessible practices; it might not be part of your weekly routine to check their listings. Creative Users bridges connections between disability, Deaf, and mad communities and creative opportunities through newsletters and online communities, like their new project, Network Connector, and eventually the Accessing the Arts website and search engine. In attending to their community consultations that inform their work, I’ve noticed that there are so many other access practices that Deaf, disabled, and mad people are imagining that organizations aren’t considering.
As I mentioned earlier, one of the ways we are trying to bridge this gap is by training Deaf, mad, and disabled people in creative, diverse, and non-conventional access practices, and then have this group of access facilitators partner with organizations to program a festival. We can then show other festivals and art galleries that this is what access can look like when you work with disabled people.
The other part of this project would be to work with lots of different disabled people as event participants, including DST students if anyone is interested. In this role, you would attend some of the events for which our project has created an access plan (likely via Zoom) and then attend a focus group wherein you would give feedback on your experience. You don’t have to be an artist to participate, you can simply be interested in attending art events.
Royal Society of Canada Appointment
Amanda: That’s amazing! This is going to be a really great opportunity for a shift in thinking. I also want to congratulate you on being named a member of the 2020 class for the college of new scholars, artists, and scientists by the Royal Society of Canada (RSC). I’m super excited to learn about what that means.
Eliza: Thank you. I, myself, am just getting acquainted with what it means. I’ve just started reading about the history of the RSC. It’s quite an old organization; it was started in the 1870s under the leadership of the Governor General of Canada. The RSC was established to formalize a relationship with the academy and social issues and current debates. This relationship is an effort towards public scholarship, which is something we’ve long cultivated in the School of Disability Studies. It’s interesting to think about how public scholarship is shaped by whoever is leading the initiatives. For a long time, like most academic institutions, there wasn’t much diversity in who was leading the charge at the RSC, which shaped the kind of public scholarship that the organization produced. I think the RSC is currently reckoning and reconciling with the role the organization played in perpetuating inequity – again, like a lot of academic organizations are now doing. For example, in 2017, the RSC established the Truth and Reconciliation Commission (TRC) Task Force to respond to the TRC’s call for institutions to “examine the RSC’s historical role in the Indian Residential School System and academia’s larger role in the marginalization of Indigenous knowledge.” And the establishment of the RSC’s College of New Scholars, which I’ve just been inducted into, is part of the organization’s effort to bring new people to the table, so to speak; people who haven’t been recognized by these kinds of scholarly institutions, historically. I think the hope is that by continuing to induct scholars that represent a range of disciplines, methodologies, and communities will change the kind of public scholarship the RSC can produce.
You have to propose what public issues you might engage with when you apply for RSC membership because they’re very clear that it’s not simply an honorary nomination and title. It’s a working body, it’s a working institution. I proposed to think about the implications of the first federal accessibility legislation, the Accessible Canada Act, for higher education. I think it might be an interesting case study for members of the College to think about and to evaluate, particularly in regards to disabled, mad, Deaf students and students with accessibility barriers, as well as faculty and staff. How does it change experiences for everyone at the university?
During September, I, Amanda Lin, Student Engagement Facilitator for The School of Disability Studies at Ryerson, had the pleasure of interviewing Dr. Adan Jerreat-Poole, the incoming 2020-2022 Ethel Louise Armstrong Postdoctoral Fellow. I’m so excited to get the opportunity to introduce Dr. Adan Jerreat-Poole and their work to our students, alumni, blog readers, and wider community. Please enjoy our great conversation and introduction into Adan’s life, work and interests.
Amanda: Tell us a little about yourself, your life, and interests?
Adan: I’m nonbinary, I use “they/them” pronouns, and I’m working on a stylin’ collection of overalls. My cane is black and kind of sparkly. It makes me feel like a magician. I wear fuzzy sheep pajama bottoms to most of my Zoom meetings. Outside of academia I’m a fiction writer, and my debut queer young adult (YA) fantasy novel, The Girl of Hawthorn and Glass, came out this September. I live in Kingston, Ontario, with my forever partner, who is Palestinian, brilliant, patient, and gorgeous. My Arabic pronunciation needs work, but I’m an enthusiastic learner, and he’s an encouraging teacher.
I’m interested in digital intimacies, in challenging the category of “human,” and in imagining accessible and feminist futures. I’m interested in our relationships with technology, which are currently dominated by capitalist and colonial ideologies, but which I think we could make differently, and hack/mod to use otherwise. I’m interested in collective care, ethical research, and interdependency.
Amanda: What led you to Disability Studies?
Adan: Depression was a bad word when I was growing up, so we used euphemisms instead—I was just tired a lot, just sad a lot, just shy around people. Overly sensitive. Overly imaginative. That’s why I had all the nightmares. During my MA, I went to the doctor for a blood test to explain fatigue, and left with a diagnosis of depression and a prescription of rest. At the time I was angry with the label, but looking back, her treatment plan was one of the wisest I’ve received.
Coupled with depression is my experience of chronic low back pain, which started when I was 17. In my years-long attempt to get a diagnosis and treatment plan, I was shuttled between a lot of (masculine) doctors who told me I was exaggerating, sensitive, or “just” depressed. The medical sexism I experienced in my early 20s was my wake-up call about the systemic biases in the psymedical industry.
Pain: physical and emotional, intertwined, embodied, personal, secret, mine, ours. I didn’t want to be a secret. I didn’t want well-meaning people telling me to try deep breathing and yoga. I wanted to understand why I left each medical encounter feeling small. I wanted to find other people like me.
Discovering disability studies was part of discovering disability justice, of coming into a language that gave me words like “ableism” and “sanism.” Disability studies gave me a space to understand my experience in the broader contexts of capitalism, patriarchy, and prescriptive able bodiedness. Disability justice has also taught me to think beyond my own experience–for example, about the relationship between ableism and colonialism, white supremacy, and anti-Blackness.
Amanda: What is your academic background?
Adan: In my first year of undergrad at the University of Waterloo, I took an English lit class on a whim, because I was a reader and I liked the idea that reading poetry and fiction was homework. The professor was passionate, I loved the poetry I was reading, and I immediately switched my major. I had no idea what I would do with it–but I loved learning, reading, writing, and thinking. I loved learning about the histories of literature used in revolution and social change. I was especially enamored by modernist writers, like James Joyce and Virginia Woolf. I’m pretty sure Woolf’s critical portrayal of the psymedical industries in Mrs. Dalloway had a role in that.
During my MA I took a class on adaptation–thinking about the move from book to film and video games–and I had another mental shift. I was starting to feel disillusioned by modernist criticism and the trends in the field. The truth? I didn’t want to write about the 1900s, I wanted to write about what was happening now.
So I turned to cultural studies.
I did my PhD in English and Cultural Studies at McMaster University, focusing on Mad/crip digital identity play, exploring angst, self-harm, depression, anxiety, and suicidality in social media and videogames. During this time I published articles on online harassment, crip futurity in video games, angry feminist avatar play, and queer feminist digital media use. I graduated this summer.
Amanda: Can you tell our students/readers about your work around digital humanities and gaming? And can you explain to the readers and I, what are digital humanities?
Adan: I think any scholarship that combines humanities methodologies with digital tools, methods, practices, and/or objects falls under the umbrella of the digital humanities (DH). For example, DH might mean studying a video game or hashtag, or using digital platforms and visualizations to communicate your research. DH might also mean using quantitative analysis and/or algorithms in your work. Here are a couple of examples from my own research projects:
Using Python to collect a dataset of tweets using the corporate wellness hashtag #BellLetsTalk. Analysing the resulting text using Voyant (which tracks word frequency) as well as close reading.
During my postdoc, I’m hoping to study how queer disabled feminists use digital media –particularly YouTube, Twitter, and Instagram–to create community and to perform collective care and advocacy. I also want to explore how feminist science fiction imagines future crip/queer technologies and relationships with technology.
Amanda: What is it like to start your postdoc during a pandemic – e.g. are you living in the area and do you hope to come to campus, etc.?
Adan: I’m grateful to be part of a supportive and activist-oriented department, and I feel really lucky that I was able to join a community of like-minded scholars during such a difficult time. And it is difficult–we shouldn’t pretend that it isn’t. I’m living in Kingston and am not able to come to the office or to meet anyone from the department in person. I’m getting tension headaches from overusing my screen. I’m constantly refreshing the COVID-19 update page, watching the numbers creep up every few days. I’m worried for my loved ones who are immunocompromised. I’m scared of my landlord. I’ve been playing Half-Life: Alyx, my first virtual reality (VR) game. I’ve been having nightmares. I’m a person, and I’m struggling.
Amanda: Lastly, what are three main things you hope to accomplish in the first year of your postdoc?
Adan: For me, the personal is always political, and the bodymind of the researcher is always in the frame. My experiences of sexism, transphobia, and abliem/sanism shape my understanding of broader systems of violence (that disproportionately impact poor and of colour bodies). I’ve often used personal writing in my academic work. There is no clear line for me between work and home, living and teaching and writing. (And now that many of us are working from home, there are even fewer boundaries!). So my goals for the postdoc are my goals for the year, which will always include my commitment to activism and social justice, and my desire for community, connection, and collective care.
I’m not immunocompromised, so “survive” isn’t on this list–but I know it tops the charts for many, and I want to take a moment to remember all of the academics–students, sessionals, postdocs, TAs, RAs, and faculty–living in fear for their lives: from the virus, from police violence, from abusive partners, from starvation and poverty. These issues need to matter to the university and to academia more broadly.
Here are three goals that are high on my list right now for year one of a panacademic postdoc:
Have thoughtful conversations–over Zoom, the phone, email, or Google docs; at virtual conferences or informal Skype chats; through tweets, Whatsapp voice notes and text messages–with other scholars, writers, learners, teachers, activists, and fans inside and outside the academy about access and digital media, disability representation in popular culture, and transforming educational, feminist, and queer spaces towards an ethics of rest, interdependency, and care. I hope any student in the School of Disability Studies knows that I would be happy to speak with them about any of the topics related to my research.
Tell my partner every day that I love him
*** Trigger Warning for depression and weight loss ***
Eat. The last few months have been really hard on my depression and anxiety. Anxiety triggers IBS, and depression takes away my appetite. Eating is work, and it’s a daily struggle. During past depressive episodes I’ve lost weight unintentionally and it’s really scary.
In solidarity and care,
Adan
Image description: a white nonbinary person stands at the corner of of a building, smiling, and holding a black cane in one hand. Their other hand is in their pocket. They are wearing a grey toque, a red t-shirt, and a pair of blue and white striped overalls. One side of the building is red brick covered in leafy green and red climbing plants. The other side is a painted mural featuring a beige background, a silver and white window, and a brown tree with multicoloured leaves.
The School of Disability Studies is in solidarity with the Black Lives Matter Toronto protesters and their actions on Saturday, July 18th. Through artistic intervention, they drew public attention, once again, to the colonialist, racist and ableist values celebrated by the statue of Egerton Ryerson and similar monuments in the City of Toronto. We share their critique and we defend their right to engage in peaceful protest always.
As a School, we represent students and disabled constituents who have asked us to work to decolonize the university and dismantle its anti-Black racism. Our efforts are supported by the Faculty of Community Services and its strong commitment to action against anti-Black racism. They are supported by Ryerson University as evidenced by the recommendations of the Anti-Black Racism Campus Climate Report, and the gains made by student and political action to reverse the presence of on-campus security. The protesters have given us an opportunity to powerfully acknowledge the university’s readiness to implement recommendations which were made on behalf of students, staff and faculty. Safety cannot be realized through containment and the dampening of creative and peaceful protest.
The statue of Egerton Ryerson symbolizes an approach to education that promotes obedience, compliance and control. His legacy includes contributions to the residential school system, to racially segregated schooling, and to the systemic institutionalization of disabled people. A constant reminder of the shameful history of eugenics in Canada, the statue’s ‘watchful presence’ at the centre of campus tells Black, Indigenous and disabled students that they do not belong at the university.
Black disabled detainees are particularly vulnerable at a time of high public health risk from the double pandemics of COVID and systemic racism. The deaths of Regis Korchinski-Paquet, Ejaz Choudry, Christopher Reid, Ian Pryce, Andrew Loku, Clive Mensah and many others have taught us that racism, ableism and sanism conspire with deadly consequences when disabled people interact with police. Our communities need systems of safety, well-being and investments that do not further harm Black, Indigenous, disabled and mad people. In this regard, and in the spirit of collegiality, we are particularly concerned by reports that one of the protesters did not receive their medication for much of the 15 hours they were detained.
As an important hub of disability scholarship, the School of Disability Studies is committed to identifying and resisting systemic ableism and sanism wherever it occurs. We support the call by Black Lives Matter to remove the Egerton Ryerson statue immediately as a step in beginning to tear down all that it symbolizes and upholds. We support the request from lawyer Saron Gebresellassi for the Crown Attorney’s office to drop the charges against the three protesters. We call upon our legal, political, community and academic leaders to do the same. We urge all who are able to donate to Black-led organizations and communities that are doing the necessary hard work in the fight against anti-Black racism.
Vision Passion Action 