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
ID: A dark skinned wheelchair user with long hair and a beanie sits at a small table, using their laptop to participate in a video meeting. The laptop screen is shown to their right, with the call being live captioned. The main speaker is a dark skinned person wearing a hijab and glasses, and 3 other participants are at the bottom of the screen, in smaller windows. In the bottom right corner, a yellow service dog bounds towards the wheelchair user. Credit: Dana Chan for Disabled And Here. Link: Disabled And Here project page
Dear Black, Indigenous, and racialized DST students and alumni,
In an effort to be more inclusive in the curriculum we teach in the School of Disability Studies, we invite Black, Indigenous and students/alumni of colour to take part in an upcoming curriculum town hall. This town hall will take place on May 25th, from 6-8pm via Zoom. The town hall will be facilitated by a Black student, alumni, or instructor (TBA).
This town hall will facilitate a discussion of how we can better support you and your studies.
It will be a place for you to discuss your experience as a Black, Indigenous, and racialized DST student and give us feedback on how our curriculum can better reflect Black disability, mad, and Deaf studies. We will introduce you to a new initiative led by DST’s Anti-Black Racism Committee, Black Disability and Mad PerspectivesSpeaker Series: An Open Educational Resource Project. Perspectives is a series of three online accessible discussions that will feature Black disabled, mad, and Deaf scholars, artists, and community activists throughout the summer. We will record these discussions and turn them into webcasts that will be used in DST classes. This project is part of an ongoing effort to strengthen and more predominantly emphasize Black disability, mad, and Deaf studies across DST curriculum.The town hall facilitator will describe this project more fully and contextualize it in the recent history of addressing racism and anti-Black racism in the School. There will be lots of time for questions. In the meantime, you can find the full project description here: https://drive.google.com/file/d/1JnvxQT3wDYmk-bPqcPJdZMIN8X8bnkDe/view?usp=sharing
We will select the themes and the speakers for the Perspective Series with your direction. We would like your feedback as to what histories, current events, and social issues you would like to be covered through Black disability, Deaf, and mad studies perspectives in DST courses. We are also looking to you for who to feature in this speaker series.
Here are the questions you will asked at the Town Hall:
What have your experiences been over this past year as a BIPOC student at Ryerson? How are you feeling?
What barriers related to racism and ableism/saneism/audism have you encountered in the classroom:
From readings and lectures?
From class activities?
In the teaching method?
From peers?
From faculty?
In the assessments (assignments)?
In technology?
In accessibility?
In course management policy (e.g. academic integrity, late assignment policy, non-academic accommodations)?
What kind of support would be helpful to you around your student experience?
How can the School better support you?
*At this point we will introduce the Perspectives Speaker Series*
What topics related to Blackness and disability, Deafhood, and madness would you like to see explored and taught in our classrooms?
What are some current topics, debates, or areas of concern that should be addressed through the perspective of Black disability, Deaf, & mad studies and activism in our classrooms?
Who would you like to feature in this Speaker Series?
How would you like to participate in the Perspectives Speaker Series (e.g. as a moderator, discussant, or another role)?
This will be the beginning of the conversation. We will follow up with you as we plan the Speaker Series, taking your direction, as we promote the Series, and we hope that some of you will be involved in the Series.
There will be ASL interpretation and Open Captions. If you have any access questions or concerns, please contact Tali at avital.cherniawsky@ryerson.ca.
If you have any questions, please contact Eliza as the chair of the DST Anti-Black Racism Committee (eliza.chandler@ryerson.ca) or anyone else on the committee. Eliza can put you in touch with the student/alumni representatives on the Anti-Black Racism Committee, who can answer questions as well.
Please confirm your attendance by emailing Eliza and she will email you the Zoom link ahead of the town hall.
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.
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.
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.
Increased Risks
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.”
Wage Differences-Underpayment
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).
Safety
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:
ICU Eugenics;
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.
ICU Eugenics
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!
This piece is written by an alumna of the Disability Studies Program, Barbara Steele.
On March 16, 2020 the Ontario government declared a state of emergency due to the Covid- 19 pandemic. This state of emergency closed all non-essential services. Since April 15, the Ontario government has extended the state of emergency to May 12, 2020. For many support workers, developmental service workers, personal support workers and social service workers, this is the first time our jobs have been labeled as essential by our government. Having the government declare our jobs essential was an acknowledgment of the necessary care work we provide. Until this point our jobs have been a mystery to many. Most of us can recall trying to explain to someone what our job entails. We are often met with “oh, that job must be so hard” or “you must be an angel to do that work.” This pity and/or saintliness directly correlates to how society views the disability community. Stereotypes about disability abound. These stereotypes tell us that disabled people are unable to live active lives like everyone else. As essential workers, our care labour is now seen as necessary and valued while the people we labour with are still systematically de-valued.
Being declared an essential service has an impact on our work. Right now many support workers are, for the first time, learning how to work with new personal protective equipment (PPE). Not all community agencies were prepared for this type of crisis. Since becoming an essential service support, healthcare workers have been seen as heroic. To anyone who works with disabled people we have always known our jobs were essential. It is society that needs to understand the value of our work and the value of care. I work as a developmental service worker within a residential setting with people labelled with intellectual disabilities. Due to COVID-19, it is not business as usual as physical distancing practices are in effect in people’s homes. Support workers are trying to ensure mental, physical and emotional well-being for those they support while trying to work with new procedures and equipment. Physical distancing practices are not practical for those who need support for completing daily activities such as getting out of bed, getting dressed or having personal care needs met. For some disabled people this reliance on others for care happens every day. Being an essential service has not necessarily improved our work conditions or the supports we and disabled people receive.
Although many of us often think we are independent, we are not. This idea of independence is false. Most of us need others’ help to get our car repaired, many of us do not sew our own clothes, or grow our own food. Although we might think we are independent, meaning we do not rely on others for assistance in daily living needs, we all need some form of human connection, support and care. For instance, right now there are those who are unable to leave the house. These individuals are relying on others to provide them with much needed supplies. This support could be from a friend, other family or a company that delivers food and other products to their homes. Many disabled people and support workers are used to thinking through these systems of interdependence, and figuring out daily survival strategies in both formal and informal arrangements. The pandemic has shone a spotlight on our interdependence and our collective need for care. The questions we are left with is what will happen after the pandemic? Will there be better procedures and supports in place for our newly recognized essential services? Will we still value interdependent care? Will support workers go back to being unknown or will this essential status remain?
This post was written by current Disability Studies student,Paul Benson.
If you are a disabled person like me, you are facing new challenges due to the COVID 19 pandemic and you may be feeling overwhelmed and uncertain about your future.
This post is designed to share information that helped me to meet my needs for safety, access to necessary resources, and also to reassure us that – with appropriate support from those who care about us, the various levels of government, and local community – we will find a way forward.
We are dealing with a once-in-a-lifetime situation and it is changing the way we live. Be reassured that a large community of support is being mobilized to help us all to remain safe and healthy and to enable us to create a successful future in the post-COVID 19 world.
In a recent announcement, UN Special Rapporteur on the rights of persons with disabilities, Catalina Devandas said ‘”People with disabilities feel they have been left behind… containment measures, such as social distancing and self-isolation, may be impossible for those who rely on the support of others to eat, dress and bathe.”’
As disabled people, we also face increased risk of death if we become infected with the virus. If our immune systems are compromised, we are more likely to be hospitalized and need a ventilator to support our breathing until the virus has run its course. We need reassurances that, if infected, we will receive all the care necessary for recovery and not be treated as a lower priority than the non-disabled. Advocacy groups are lobbying the government to ensure that we are not discriminated against in this ableist society.
You may also be facing financial issues as a result of increased costs, and a loss of income due to being laid off, or having reduced employment opportunities in the coming months (e.g., the loss of summer jobs). There are programs out there from the government and other organizations to help us manage during this difficult period. See below for more details.
Getting the help you need
Dialling 211 at any time will connect you with your local Community and Social Services Help Line where you can get information about government and community-based programs that may be able to help. Or you can go to their website at https://211ontario.ca/contact-211-ontario/
Depending on where you live, dialling 311 can connect you with municipal support programs (e.g., if you live in Toronto, Mississauga, Brampton, or Halton).
Building up your supports, planning for a bright future
Now is the time to get connected more closely with those around us, even as we practice physical distancing. This is where technology can help. Through Skype, Zoom, FaceTime, Facebook, Twitter, text messaging, email, and other tools, we can reach out to family, friends, and others to get the supports that we need and to provide support to those we care about. If you are not yet tech-savvy, there are likely volunteer groups within your community who can provide remote support and access to technology. If you need help, consider calling 211 to request support.
Advocacy groups such as Canadians With Disabilities – Ontario (CWDO) have created guides to how to get assistance http://www.cwdo.org/node/640
Other organizations are building lists of where you can obtain services such as food delivery, vital medical supplies, courier services, etc. For example, the Access from Home initiative https://accessnow.ca/accessfromhome/#index
Through the university, college, and school systems, you can get support to continue your education and ensure that your children can continue to learn. For more information, see: https://www.ontario.ca/page/learn-at-home
Protecting yourself and your care workers
If you require the support of care workers, then you need to be confident that they do not have the virus and that they have appropriate personal protection equipment (PPE) when assisting you (e.g., gloves, a face mask, and a face shield if required). They must be checking themselves for symptoms (e.g. testing for an elevated temperature) every day before they visit you and they must stay away if they have any symptoms. If, for any reason, your care workers cannot come to assist you on your regular schedule, then contact your provider (e.g., the LHIN) to ensure that you have the level of care that you need.
Getting healthcare support
Your doctor’s office may be temporarily closed. Ensure that you know how to contact a healthcare provider if issues arise.
See also the CWDO guide for more detailed instructions.
An opportunity for building stronger communities
While attending to your own needs first is paramount, you may also be in a position to help others. Consider reaching out to community groups, religious organizations, and other local resources. You might be able to volunteer to help others and you may also find new resources locally to help you.
We are in the middle of creating a new more socially responsible way of conducting our lives. Let this be an opportunity for creating a better situation for ourselves and those around us to thrive and prosper. We will get through this and, hopefully, we will build a new and brighter future by working together for the good of all!
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
A young Deaf woman faces communication barriers, rejection, and her own mortality as she visits her mother in hospice. Performed in ASL with English interpretation. For more information check out the Rhubarb Festival.
THE ARTISTS
Tamyka Bullen/ performer
Alex Bulmer / dramaturg + co-director
Chelsea Dab-Hilke / co-director
Vision Passion Action 