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.”
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.
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!
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.
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?
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.
Written by Angela Mota, current student in The School of Disability Studies at Ryerson University.
On March 25, 2020, two weeks into a global pandemic, a documentary was released on Netflix, Crip Camp: A Disability Revolution. Crip Camp challenges the ways that disabled people have historically been represented on screen, portraying a multifaceted story of the disability experience. Disabled people are represented as smart, funny, willful, sexual, forceful, and caring and, most importantly, their personhood is acknowledged. It is the story of a group of disabled kids that met at Camp Jened, a camp run by “hippies” located in upstate NewYork in the 1970s. It was a place where kids were free to explore their identities, to share space with people with similar lived experiences and see themselves as valuable members of the community. Because of this interdependent community, disabled teens were able to imagine a better, more inclusive world and put action to that dream, ultimately leading to the American Disability Rights Movement.
Mia Mingus is a writer, educator and community organizer for disability justice and transformative justice. Mingus (2011) describes “access intimacy” as the feeling when someone else “gets” your access needs, by understanding how ableism manifests itself in disabled people’s lives. It is not just the action of access or someone, is not charity, or a humiliating trade for survival or an ego boost. It has looked like crip-solidarity (Mingus, 2010), an interdependent relationship that connects people through community and is achieved by loving each other and therefore, loving yourself.
Camp Jened was a summer camp explicitly made for teenagers living with disabilities. Access intimacy is embodied in the ways the campers and counsellors form crip-solidarity by helping each other navigate conversations, the physical camp environment and in assisting each other with personal care. One specific example where access intimacy is demonstrated, is when Nancy Rosenblum, a camper, joins the picnic table conversation about how the kids feel they are treated by their parents. Nancy’s speech can be challenging to understand, leaving the film crew unable to caption her words. Yet her long time friend, Steve Hofman attentively listens, has taken the care and time to understand her and can use his voice to help Nancy’s thoughts be expressed. Through his voice, he was able to help Nancy explain how she feels that she is denied the right to privacy because of her disability. You can almost see the relaxation of Nancy when Steve states her words. Her needs are met, and she can participate.
Before their experiences at Camp Jened, many of the teens had only experienced medical perspectives, which suggested their impairments were the reason they were struggling to belong in their communities. Camp Jened allowed the kids to see that there were other stories. The pandemic altered the release of Crip Camp,from movie theatres to Netflix. This change has led the movie to be seen by a wider audience, therefore leading to a significantly greater number of people seeing a different representation of disability and altering the prominently viewed single story. The co-writer and director of the movie Crip Camp, Jim LeBrecht, talks about before he went to Camp Jened that he never saw anyone like him. The single-story he believed was that of difference, and to be accepted; he better learn to adapt. How a story is told holds power. It informs how we understand each other and leads to how we treat people.
Camp Jened allowed kids to expand and change the stories they knew about disability, and they were able to see a new representation that showed disabled people they are being disabled by external barriers, not by their impairments. At Camp Jened, most campers experienced being cared for by someone other than their parents for the first time. In the film, counsellor Judy Hueman talks about how the experience of a crab outbreak formed a crip-community of care and support, and says, “People were having fun, we were working together as a whole unity, doing things we had not done before together. We were cleaning, washing and showering. The experience of personal assistance was built into all of our lives that needed it.” It is not surprising that Judy Huemann went on to be a co-founder of the Centre for Independent Living. Through service and solidarity with each other, mutual access intimacy can be achieved.
It is important to note, the kids at Camp Jened were sparking a movement, while other disabled individuals were being locked away from the world, neglected and abused in institutions. The kids at Camp Jened held some privilege as many were living at home in a time when the eugenics movement was encouraging parents to institutionalize their disabled children. When disabled people have been represented as being excluded and sent away to institutions, it changes the way society treats them when they are finally seen. One of the counsellors in the movie talks about how he had no experience with disability. When the kids started getting off the bus at Camp Jened, he was at first startled, because he did not have exposure to disabled people before this because disabled people were excluded and unable to move freely in their own communities.
In another scene, one of the Black male counsellors, tells a story about taking teens to the ice cream shop. He talks about how the people in the town and within the shop itself would stare at the Black man and group of disabled kids. This counsellor is quick to point out how, although he is not disabled himself, he feels the same obstacles as someone in a wheelchair because of being a Black man. He feels the same stares and apprehension that disabled people face when he is out in the world. It exemplifies how, when you experience oppression and negative representations, no matter what your experiences are, you can understand others. It also illustrates how the disability rights movement intersects with the civil rights movement.
The second half of the film focuses on the American Disability Rights movement. During the groundbreaking protest called, “the Section 504 sit-in,” in which disabled-rights activists occupied a federal building for almost a month, demanding greater accessibility for all. The Black Panther Party provided solidarity to the disabled group of activists during the 504 sit-ins and were instrumental in helping them succeed. The act of others seeing disabled experiences and believing those experiences created allyship. The Black Panther Party understood it was the systemic barriers that were disabling as they experienced their own barriers in relation to being Black men and women. Through their solidarity actions of providing daily hot meals and bringing in food for breakfast and lunch, disabled activists were able to continue a 28-day civil disobedience demonstration. Because of the Black Panther Party’s lived experience of being misrepresented and oppressed, this act of solidarity met the needs of disabled individuals and represented access intimacy.
The movie Crip Camp shows that with access intimacy, solidarity, and community, people have the power to make a difference and change the representations that disabled people are burdens , have no value and should be locked away. With the success of Crip Camp, we can be hopeful that studios and audiences will explore and view other representations of disability. The danger lies in that Crip Camp is one singular story of a Western disability community and ends with the passing of Bill 504. We must remind ourselves, there are many more stories to be told about the lives of disabled people as they continue to fight for access.
This piece was written by current Disability Studies’ student, Pauline Wangari.
Stigma and Discrimination
The Coronavirus is associated with racial stigma and discrimination. Stories and stereotypes have already had a major impact, specifically on Asian populations. Most countries, if not all, have imposed travel bans and restrictions on Chinese nationals and non-citizens to the area. Discrimination has manifested in the form of evictions, cutting off of business ties, bullying, as well asphysical and verbal altercations.
The phrase “We’re all in this together” has become a rallying cry during this pandemic. Although the Coronavirus has affected most everyone in some way, regardless of race, gender, age and even socioeconomic status, the magnitude and nature of the impact has been anything but global. Instances of racism fuel the risk of perpetuating stereotypes and triggering health inequities. This is particularly true for female healthcare workers. Evidence now points out that Black and Latinx workers face much more economic and health insecurity from COVID-19 as compared to their Caucasian counterparts .
The impact of the Coronavirus will leave a lasting mark on society for years to come. The disparate racial impact of COVID-19 comes as no surprise, given the ongoing legacy of racism that continues to produce inequities affecting nearly every aspect of life, particularly in the US.There is a notable racial impact of the virus in our social and economic aspects of life. Persistent racial differences in regard to health status, healthcare accessibility, wealth, employment, wages, housing, income, and poverty all contribute to increased susceptibility to the virus – both economically and physically.
Racialized healthcare workers face greater underlying pre- and post-pandemic health insecurities making them more vulnerable to COVID-19. Some of the challenges include a heightened risk of contracting the virus, increased workplace violence, underpayment, being under-valued, pre-existing health conditions, lack of health insurance, housing conditions, shame and stigma.
All frontline healthcare workers have an increased risk of contracting the virus. However, as women are predominantly tasked with the role of providing care, they will be disproportionately affected. Gender and power dynamics increase the likelihood that men will be prioritized over women, or male-dominated roles such as doctors prioritized over female-dominated roles such as nurses in distribution and decision-making around personal protective equipment (PPE). Given women’s additional gender roles as primary caregivers in their households, a ripple effect of increased risks will occur.
From a recent incident in Ontario, Canada:
“Over 1675 troops have been deployed to five long-term care homes in Ontario and a further 25 in Quebec over the course of the COVID-19 pandemic. The Ontario officials were notified of the report by the federal government in a memo citing concerns on deficiencies in home care infrastructure for example PPE’s.”
“Nurses/PSWs were often observed not changing PPE for several hours while moving between numerous patient rooms. Equipment is seldom ever observed to be disinfected but is used in between patients.”
Female workers are often paid less than their male counterparts. This inequity in pay can also be seen in healthcare workers. Additionally, racial inequities in pay also exist causing Black workers to face significant pay penalties., Black workers face significant pay gaps in the labor market, and research has shown these pay gaps have grown since 2000 and in the decades before (Gould 2020a; Wilson and Rodgers 2016).
We have witnessed severe restrictions in day-to-day activities due to the lockdown associated with the pandemic in hopes of “flattening the curve”. These measures may lead to particular safety concerns for women going to and from their places of work, given that they are also constrained by part-time employment. Drastic changes have disrupted the normal protections afforded in typical daily life–such as the presence of other people, well-lit transport routes, variety of options for travel times, etc.— and leave women vulnerable to violence, including sexual violence. In some contexts, where workers regularly commute across national or state borders, take an example of Swiss healthcare workers commuting to northern Italy, more stringent restrictions on movement may also increase vulnerability and risk for women such as getting stuck on the opposite side of the border. Women frontline healthcare workers will need to continue to reach their jobs each day, despite the risks, and with fewer options available.
Prior to the pandemic’s onset, research from northern Italy found 45% of healthcare professionals reported workplace violence. This research found that men were more likely to commit physical violence than women, and that assaulted professionals were more likely to be female.Already, there are reports of violence against healthcare workers during the COVID-19 outbreak in numerous countries, with the majority of victims being women.
As fright of the pandemic spreads, so does panic and panic behavior. Women frontline healthcare workers are at an increased risk of shame, discrimination and stigma from their community and family members for their perceived role in managing the pandemic. Additionally, there may be fears that these individuals are also spreading the virus within the community.. Examples of this were drawn from the Philippines and the Democratic Republic of Congo (DRC), where health workers were expelled from their homes because landlords feared they would transmit the virus. There may also be unintended consequences to sudden upswings in community health workers or volunteers, who may also face shame, discrimination and stigma based on their involvement with the response and/or bending of traditional gender roles.
Lack of Supports
In times of crisis, care and wellbeing for ourselves, staff, volunteers and others tends to get overlooked for the more ‘urgent’ work of ensuring lives are saved. This results in fast burn out, a decline in the quality of healthcare being provided, stress and can have long-term harmful effects for frontline workers.
We have already witnessed many equity and justice challenges that need to be looked into before further damage is caused. We mustrecognize and stand up against racial discrimination and stereotyping. Our federal, state and local governments have to ensure that necessary policies and practices are implemented, so that needed information, training, resources, and care are equitably available to all people and communities. As we think about the upcoming Census and elections, the COVID-19 pandemic underscores the ongoing need to push for affordable and quality healthcare coverage. Workers must be well-trained and have a diverse understanding of healthcare and medical research. Healthcare and healthcare resources must be accessible to all,regardless of race, gender, age or other differences.
What can be done?
To mitigate the risks to healthcare workers with regards to the virus, certain measures need to be put in place:
All health care workers need to be given adequate PPEs;
The needs, risks and concerns of the healthcare workers must be heard and communicated up the chains of command;
Gender and equity policies need to be put in place to ensure equity in the workplace;
Female healthcare workers need to have representation in decision-making;
Supports in the form of increased wages, promotions and leaves should be given to healthcare workers; and
Higher ups need to facilitate the movement of healthcare workers in contexts where movement restrictions have been imposed.
Gould, Elise. 2020b. “The Unemployment Rate Is Not the Right Measure to Make Economic Policy Decisions Around the Coronavirus-Driven Recession: Policymakers Should Use the Employment Rate to Continue or Stop Economic Assistance.” Working Economics Blog (Economic Policy Institute), March 20, 2020.
Gould, Elise, and Heidi Shierholz. 2020. “Senate Coronavirus Bill Is Crucial—But It’s a Fraction of What’s Needed.” Working Economics Blog (Economic Policy Institute), March 18, 2020. Rho, Hye Jin, Haley Brown, and Shawn Fremstad. 2020. A Basic Demographic Profile of Workers in Frontline Industries. Center for Economic and Policy Research, April 2020 Meepagala, Shawn, and Carl Romer. 2020. “Mapping Racial and Ethnic Differences with COVID-19” (interactive data tool). Center for Global Data. Accessed May 29, 2020.
WHO. COVID-19: Operational guidance for maintaining essential health services during an outbreak [Internet]. Geneva; 2020. Available from: file:///C:/ Users/ebarasa/Downloads/WHO- 2019-nCoV-essential_health_services-2020.1-eng (2).pdf
Wilson, Valerie, and William M. Rodgers III. 2016. Black–White Wage Gaps Expand with Rising Wage Inequality. Economic Policy Institute, September 2016.
I, Amanda Lin, Student Engagement Facilitator for the School of Disability Studies at Ryerson University, had the pleasure of interviewing Loree Erickson, the current Ethel Louise Armstrong Post-Doctoral Fellow. The following blog post is a summary of the highlights from our hour-long conversation together.
Our conversation took place in the first couple of weeks of the COVID-19 pandemic, information regarding the high numbers of cases of the virus in long-term care facilities and prisons as well as the challenges of accessing communities of care were at the heart of our conversation. Throughout our interview, Loree identified three concerning areas surfacing in relation to COVID-19. The areas of concern were:
The erasure of disabled people from pandemic policies and practices; and
The ways marginalized communities are at a greater risk of contracting the virus.
As a Venn diagram, the area created by where these three issues overlap exposes an extremely worrisome convergence.
Loree and I discussed how disabled lives are not seen as worthy of saving from the virus, both across Canada and throughout the world. Many of the ICU triage policies and practices currently in place do not prioritize disabled lives and are operating from dangerously discriminatory perspectives. Decisions regarding life-saving treatment and access to equipment such as ventilators are being made using determinations of value largely rooted in racist, disablist, and capitalist standards of productivity. Recently, we have seen disability communities and our allies come together to challenge these ICU policies that de-prioritize disabled people. Disability justice activists are directing our attention to how this pandemic shines a light on the many different ways that eugenics views are at play in these life and death decisions; highlighting the ways that existing systemic inequalities are being exacerbated within marginalized communities. Loree and I are both excited by this organizing.
Erasure of Disabled People from COVID-19 Policies and Practices
Disabled people are being erased from this pandemic through current public health policies and practices that failed to take disabled people’s lived realities into account. Loree pointed out that there are many “how to” videos or instructions on how to put a mask on yourself. But there is a lack of protocol surrounding how to safely put a mask on someone else. Many disabled people require support in facilitating activities of daily living (ADL), during a pandemic, this includes putting on a mask. This is just one example of a lack of public health protocols that include disabled people and our needs. It is as if disabled people do not live on this earth and therefore there is no need for such protocols to exist. However, we all know this to be false. Many refer to the lack of protocol as a “small oversight.” But we see this as yet another example of how disabled people are being overlooked and written out of the dominant ideas of who consists of “the public”.
Disabled and Marginalized People at Greater Risk of Contracting the Virus
This failure to acknowledge the existence and needs of disabled people is also seen in the high infection rates in institutions of care and confinement, like prisons and long-term care facilities. Recent walkouts and widespread positive testing for the virus within group homes and long-term care facilities, have illustrated the inadequacies around the level of care that many deem “suitable” for disabled people and their caregivers. As Loree pointed out, the risk in contracting the virus exponentially increases the more a community of people is exposed to barriers and pre-existing inequalities. This exposure, occurring through an interlocking matrix of structural inequality, is why we are seeing such an increased risk in institutionalized people, homeless people, poor people, disabled people, indigenous communities and racialized people. We also need to be paying attention to the ways that disproportionate risk is falling on marginalized communities. This is especially true for the personal support and/or attendant care workers as this frontline work is racialized and gendered work. Much of this unsuitable care within group homes and long-term care facilities have come from a lack of protocols surrounding these institutions and the people that work in them. The government and those in power have regularly failed the disability community and their caregivers. The pandemic has only brought much of their failure into the spotlight for unimpacted communities. Prisoners, frontline workers and disabled people have been intimately aware and trying to make change long before COVID-19.
The System Isn’t Broken – It Was Built That Way and We Need to Change It
Loree shared that prison abolitionists have a saying about oppressive systems of power “the system isn’t broken, its working as intended and was built that way.” Unfortunately, this makes a lot of sense. Disabled bodies and lives have long been under-valued. Loree and I both feel this interview is just the beginning of some very important conversations that need to be had. We need to talk about this within the disability community, but also within broader society.
Those who have created these oppressive systems need to not only consult with disabled people, but they also must provide permanent space at the table, particularly for multiply-marginalized disabled people. Policy and practices surrounding should not be made without the people who are directly impacted. Policy-makers need to understand that by being proactive, there will be less of a possibility for atrocities to occur. The COVID-19 pandemic has publicized the continuation of eugenic practices within current times. No longer is anyone able to point out “how eugenics is a thing of the past, never to be repeated.” Loree and I both agree that ICU eugenics are a chilling reminder that eugenic ideas around worth and value continue into the present. There is no better time than now to address these issues. We are hopeful that those in power will listen to disabled people and take in our experiences as valid, knowledgeable and necessary. Disabled people are the experts now!
The following is a contribution from a new instructor in the School of Disability Studies, Dr. Maria Karmiris. Please join Dr. Karmiris in DST 501 – Rethinking Disability this summer!
“I am naked and the waters are rising” (Frazee, 2009, p. 119). Here Frazee is foregrounding both the tangible everyday encounters with precarity and vulnerability for disabled embodiments as well as grappling with the fundamental question of what it means to be human. During the current pandemic, human interdependencies are inescapable. However, we can also come to recognize that some humans more than others disproportionally encounter the everyday precarity of rising waters. Frazee’s work (2009) reminds us of the ways the current crisis faced by the residents in Participation House is sadly not new. It is part of a long legacy of sustaining the conditions of unjust relations of power that continuously show that some lives count as worth saving while other lives count as expected losses. Frazee (2009) also reminds us of the complicated quagmire we find ourselves in when we call on care as the solution. When the precarious position of countless Personal Support Workers is juxtaposed with the precarious position of disabled residents depending on others for direct support with physical needs, the tangibility of that rising water is ever more dangerous. Frazee (2009, p. 199) poignantly writes: “The waters have risen. We are intimates in dangerous times.” It is this intimacy of the present state of precarity that necessitates a refusal to blame individuals for the tragic loss that is reverberating within this community of disabled peoples. Rather, we must call upon each other, to reconsider our current immersion in the toxic soup of the neoliberal normative order. The lives that have been lost and will be lost as the water rises, deserve to have their legacies honoured through an invitation to think and embody disability and disabled embodiments differently. Instead of turning away from these intimate encounters with disability, we need to turn toward disability and disabled embodiments. Let each of us be touched by intimate encounters with disabled lives in the hope that through this touch we can find our way out of the toxic rising waters.
– Maria Karmiris
Frazee, C. (2009). Media Review: Disability in Dangerous Times. Journal on Developmental Disabilities, 15(3), 118- 124.
This post was written by former Disability Studies student, Michelle Hewitt.
We are living in strange and uncertain times. From a personal context, in many ways, my life continues just like before. I stayed at home most of the time, and from my wheelchair or my bed, I participated in many meetings and continued my studies. However, beyond the protective bubble of my home, life is very different.
COVID-19 has exposed many weaknesses of our medical systems worldwide, but I think that the cracks in our societal systems are even greater. The same systems that many of us relied on before this are now overwhelmed as everyone lives “our life”. Even the systems being put in place for “the elderly and the vulnerable” are being swamped by those who are neither elderly nor vulnerable. Those on low income cannot afford to pay for grocery delivery, those with restricted diets are struggling with the lottery of what food might be available, and our medication supply chains are overstretched by overfilling of prescriptions, protectionism from the countries with the raw ingredients for many of our drugs, and a US president that just bought 29 million pills of hydroxychloroquine on a whim, with no thought to the people who already use the drug and need it as part of their daily medication regime.
I could go on and on. No single country behaving like this – I see the same in Canada, the UK, the US, all over Europe, Australia. Every country seems to have its own video of people fighting in grocery stores over toilet paper. Collectively, we need to give our heads a shake. We need to do what’s right for people from a fundamental level. We need to care about people. We need to go to Maslow’s hierarchy of needs, start from the bottom and work up.
I’ve been struck by the language I see being used. “The elderly and the vulnerable” – but who are the people behind these labels? In BC, where I live, 2 separate task forces have been struck by the provincial government – the COVID-19 Seniors Working Group and the Vulnerable Population Working Group. The senior’s group, with funds from the government, set up a 211 service for seniors to reach out if they need support getting groceries, medications, that kind of thing. It’s not available to disabled people under the age of 65, but it’s potentially available to everyone over 65 whether they need assistance or not. The vulnerable population group “is working to identify, assess and address the immediate challenges faced in particular by five groups – people living on the street, people experiencing homelessness living in encampments, shelter residents, tenants of private SROs and tenants in social and supportive housing buildings.” (https://news.gov.bc.ca/releases/2020MAH0013-000536). This is the group that is also responsible for the issues faced by all disabled people. However, given the mandate to support the most complex and urgent societal issues imaginable, is that group even going to find the time to sort out, for example, groceries for disabled people under the age of 65 – an issue that has already been solved by the Seniors group?!?
There are times that we resist labels as disabled people and times that we need them to access services, as annoying as that might be. Rosemarie Garland-Thomson offers a new term – misfit. She says we fit when we are in harmony with the environment we are situated in, and misfit when we do not, and, importantly, “[a]ny of us can fit here today and misfit there tomorrow” (p.597). Certainly, within our current situation, many people who were previously able to work, be out in the community, and still live safely while immune compromised, now find themselves misfitting, unable to go out of their own homes. I paused to consider this label of “vulnerable” that is now applied to disabled people, while reflecting on Garland-Thomson’s description of vulnerability – “a way to describe the potential for misfitting to which all human beings are subject” (p.598). I would argue that vulnerability is no longer potential. For all of us, that vulnerability is here, a constant presence, where a virus has created the fear of the unknown in everyone’s lives, and where my way of living has become the new normal. So, if this is the case, who are “the vulnerable”? How can this label provide any help to disabled people who had systems in place, but now find them gone? And how can it help those who were already living precarious lives – lives that have become even more precarious?
Right now, more than ever, we have no need for labels and we certainly shouldn’t be delivering services by label. The continued reliance on labels is exacerbating the cracks in our system, creating duplications and gaps, with access to services based on arbitrary categorization. Every time a service is offered to one group, another group is left out. I believe, or at least hope, that, as disabled people, we live in solidarity with each other and with other marginalized people. Now is not the time to pit us against each other. Now is the time to look at need, and to make sure that no-one is left out.
I wonder what “normal” life will be like, once a vaccine is found and COVID-19 fades into the background. Will those of us who had previously participated in life from home be forced to constantly explain the need for that “accommodation” again, or will it be the “new normal”? Will the label “vulnerable” continue? Will services that we needed all along, such as financial increases to provincial Disability Allowances, remain, or will they be clawed back? As an advocate, I feel a sense of opportunity, that maybe we can establish some practices that will stay with us past these current times, and that as a society we will finally see the needs of people, not labels.
Garland-Thomson, R., (2011), Misfits: A Feminist Materialist Disability Concept, Hypatia, vol. 26, no. 3, pp 591-609
This post was written by current student Tiffany-Anne Stones.
As I move through my daily life, I find myself interacting with public education systems in many different ways.
I am the mother of a child in full-day kindergarten, who’s class size increased this year. I am the mother of a child who benefits from the fact that her school’s resource teacher has time to work with her on language acquisition as she navigates the complicated task of learning a second language.
I have many friends who are education workers in Ontario schools.
I work in Post-Secondary Education with disabled students who have been supported by the Ontario education system and are now moving into supports at the college level.
I am an ally and champion for teachers, EAs, TAs, and all students.
I honk my horn in support on every strike day.
In recent weeks, Labour disputes between the Ontario Government and unions representing various groups of Education Workers have escalated, resulting in many local and province-wide walkouts. Social Media platforms and local news outlets have become oversaturated with competing views and messages surrounding the issues facing Minister Lecce and Ontario Educators. It is in the careful notice of the language and images used, that a troubling representation of disabled students emerges.
Image Created by Tiffany-Anne Stones using WordArt.com
The posts are filled with language that grabs your attention. It makes you question the safety of the classrooms. It makes you worry about what the “other” students are exposed to. It makes you question the current model of education. I don’t want to minimize the safety concerns and the need for support, but I want to take some time to consider the messages we send when we use certain language in an attempt to create wow factor and grab attention.
Imagine that a child logs into social media or looks over their parent’s shoulder while they scroll through their news feed. They see a picture of their empty classroom with overturned desks and ripped books. The person who posted it did so to raise awareness. They don’t have their students on social media and they haven’t mentioned a school name, but it has gone viral and kids recognize the space they spend all week in. This child sees the image paired with words like violence, destruction, unsafe, etc. This child then thinks of the day this event happened. They think of the child that was having a hard time conforming to the classroom expectations at that time. They create an association between that child and the words violence, destruction and unsafe. Now imagine this child is the one who is being discussed in the post. Imagine how it must feel for a child to see that their struggles are all over social media, with comments that talk about how “those children” shouldn’t be in “regular classrooms”.
I recognize that teachers are fighting for our children so that they get the education that they deserve, but we must also recognize the impact that these open debates have on how we view students, and how they view themselves. We must resist arguments for increased support that frame student behavior as ‘dangerous’ and ‘unruly.’ In the current political discourse, the supports of students are being publicly debated, sending the message that those supports are entirely optional. By characterizing some students as difficult and unsafe, we also send the message that certain students are less worthy of the meaningful supports that teachers are fighting for. Unfortunately, these children are often sidelined by these debates because of the more nuanced way that their supports must be implemented to create a meaningful educational experience for the child.