No problem.
As I was saying, I am an assistant professor of disability studies at King's University College at Western University in London, Ontario, which situated on the traditional lands of the Anishinaabek, Haudenosaunee, Lunaapéewak and Attawandaron peoples.
My research and teaching practice at King's seeks to excavate the cultural construction of disabled subjects and the ways that popular culture and policy frameworks naturalize and reinforce sane, masculine and able-bodied supremacy. I am also a person born with a physical impairment, a rare form of muscular dystrophy, who identifies proudly as a disabled person. I have used an electric wheelchair since early childhood to make trouble in our world.
While the global COVID-19 pandemic has only recently been recognized as a world-altering event in need of critical resources and policy redeployment, the virus has been on my mind since it has spread beyond the borders of China. COVID-19 represents a unique, exigent and existential threat for someone like me with muscular dystrophy, a disease that most often proves fatal due to pneumonia. With lungs that function at approximately 30%, it is unlikely that I would survive this virus. It is for this reason that I have been attempting to live in relative isolation since early March. But this attempt has proven uniquely challenging, given the fact that I cannot physically live independently. Significant reduction in muscle mass means that I cannot provide for myself the day-to-day requirements of life, from eating to hygiene to repositioning at night. All of these things require daily care routines, tasks that are all delivered in close proximity.
My PSWs, funded through the self-directed funding program in Ontario, drift in and out of my orbit throughout the day. Many of my PSWs are reliant on public transit, as their low wages can make personal vehicle ownership a luxury out of reach after covering the costs of living. At any moment, my staff could accidentally bring the virus into my home and, because of PPE and sanitizer shortages, I have struggled to erect adequate barriers between me and the outside world. At times, my catching the infection seems like an inevitability.
Aside from the obvious physical and viral challenges of COVID-19, a nagging terror felt by me and many of my friends with impairments revolves around whether or not care will be delivered should we become infected. As the primary fear of imminent death slowly burns away, I, like many others with underlying medical conditions, now fear that the illness is not the only thing that may end our lives during this pandemic. Failing support systems may be just as deadly.
For someone like me, the COVID-19 pandemic draws into focus the feeble and unwinding threads of sociomedical entanglements that struggle, at the best of times, to carry the weight of my disabled existence. Access to technicians able to service my adaptive devices, from my electric wheelchair to my cough-assist machine, becomes fraught in a world of social distancing. Early in the pandemic, the ADP, the assistive devices program in Ontario that funds the purchase and repair of this equipment, was deemed non-essential and shuttered.
If I catch the virus, workplace safety standards will require all of my staff to wear non-existent PPE to continue to safely deliver care in-home. If I'm hospitalized, strict visitation restrictions will mean that I will lose access to my support team, becoming fully dependent on overworked nurses to provide the near 24-7 care that I cannot do for myself.
As we heard several weeks ago, in British Columbia, in the case of Ariis Knight, admission to hospital could mean profound isolation, being cut off not just from social contact but also from the delivery of necessary hour-to-hour care that keeps us safe from a whole host of other comorbid threats to body and mind.
We are told that, depending on our ability to flatten the curve, hard decisions will need to be made about who can and who cannot be saved. We may be asked to debate the value of a person to determine how productive or survivable one must be to merit receiving care. Those of us most at risk, disabled people and seniors, are now facing the cultural and legal pressures of necropolitics, asked to sacrifice ourselves for the benefit of those deemed more valuable. While we may have vilified the word “eugenics” after the Second World War, the ideology remains alive and well in Canada, lurking under the auspices of triage and the way of nature.
In the here and now, what do disabled people in Canada urgently need? The answer to that question is absolutely massive, but I do have several recommendations derived from my own experience and those whom I am in contact with.
First, I think it is vitally important, in overt and unequivocal opposition to eugenic rationalities, that the Canadian government affirm the rights of Canadians with disabilities to fair and equal access to medical care and prohibit any type of value or quality-of-life-based triaging of medical equipment or supplies. These types of policies, I believe, are antithetical to the spirit of the open, diverse and caring country we have tried to build over the past century. Remember, without disabled Canadians, the world would not have marathons of hope, a newscaster turned lieutenant governor, or the Back to the Future trilogy.
We must also ensure that, once a vaccine is developed, distribution is prioritized to those most in need, such as front-line workers and those with underlying conditions, and not just based on economic or productive value.
To ensure the safe isolation for those needing in-home care, easy and affordable access to personal protective equipment is critical, including masks, gloves, and alcohol-based sanitation supplies. We also need to consider increasing funding support for the types of increased care that may be needed at this time, as some tasks that were previously able to be done independently may now require help from the outside. I believe that we need to validate in-home care staff and family caregivers as vital members of an individual’s health care team—not as a social visitor—who can provide important additional support in a time when our hospitals struggle with capacity issues.
We must secure our long-term care facilities to prevent the spread of the virus from unit to unit and from facility to facility. Supporting provincial efforts to care for the caregivers is critical, including increasing PSW staffing numbers and providing regular paid time off for recharging of batteries or fighting off sickness. Scaling up the number of people working in these roles, I believe, is critical. This also means, though, a need to re-examine past practice where we warehoused disabled people of all ages in medical facilities, not because they need medical care but because of a lack of affordable accessible housing.
We need to ensure access for those seeking cognitive, intellectual and emotional therapies or services for pre-existing or newly developing mental illness or distress. Many of these services were deemed non-essential in the early days of the pandemic, with hospital resources being redeployed elsewhere, but it is important for us to get these services back online quickly for those who really do depend on these services and programs.
I think we should also reflect on the federal government’s determination that those without work need about $2,000 per month plus up to $1,000 in earnings to weather the storm. Meanwhile, programs like the ODSP in Ontario have long expected disabled people to subsist on a little over $1,000 a month. Why is the cost of living for those with and without a disability presumed to be so different? What does this tell us about the fairness of these programs that are aimed to provide a life for those unable to labour in a physically or attitudinally inaccessible economy?
When I was young, I loved to play with Lego, but not really the building part. I wasn't very good at that, but I was really good at tearing things apart. There’s something really special or magical about those moments, not just the wanton destruction, but because of what it signals, that in the ruins of the destroyed project lay the building blocks of the next great edifice.
In confronting this threat, we need to ask ourselves not just how we survive today but how we will live with ourselves once it has passed. COVID-19 may mean that the world we knew several months ago is gone, but maybe that isn't all bad news.
What if in post-COVID Canada we spent more time enabling people rather than disabling them? What if we reimagine our health care systems to be ones of plenty and not austerity? What if the flexible and digital work arrangements currently offered to non-disabled employees were extended permanently for employees with disabilities who have long been asking for this type of access? What if we provided Canadians with the things they need to thrive, regardless of their cognitive or physical ability?
I look forward to imagining some of these possibilities with all of you today.
Thank you.
