Last night I was asked to provide testimony on the Canadian government’s response to COVID-19. What follows are the speaking notes for my 10-minute opening statement to the House of Commons’ Standing Committee on Human Resources, Skills and Social Development and the Status of Persons with Disabilities (HUMA).
***
Good afternoon. To start, I would like to thank you for inviting me to provide comments and suggestions to this committee. A rally cry of the disability rights movement is the saying “Nothing about us without us” and consultations such as this are an important part of giving voice to a population historically spoken for rather than collaborated with.
My name is Jeff Preston and I am an Assistant Professor of Disability Studies at King’s University College at Western University in London, Ontario which is situated on the traditional lands of the Anishinaabek, Haudenosaunee, Lūnaapéewak and Attawandaron peoples.
My research and teaching practice at King’s seeks to excavate the cultural construction of disabled subjects and the ways popular culture and policy frameworks naturalize and reinforce sane, masculine, 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 and 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 resource and policy redeployment, the virus has been on my mind since spreading beyond the borders of China. COVID-19 represents a uniquely exigent and existential threat for someone 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 the virus. For this reason, I have been attempting to live in relative isolation since early March.
This attempt has proven uniquely challenging given the fact that I cannot physically live independently. Significantly reduced muscle mass means that I cannot provide for myself the day-to-day requirements of life, from eating to hygiene to repositioning at night to sleep. As such, I depend on others to support my daily care routines, tasks that are all delivered in close proximity. These PSWs, funding 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 transport, as 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, infection seems like an inevitability.
Aside from the obvious physical and viral challenges of COVID-19, a nagging terror felt by myself 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 immediate death slowly burns away, I, like many others with “underlying medical conditions,” now fear 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 myself, the COVID-19 pandemic draws into focus the feeble, unwinding threads of socio-medical entanglements that struggled, in the best of times, to carry the weight of my disabled existence. Access to technicians able to service my adaptive equipment, from electric wheelchair to cough assist machine, becomes fraught in a world of social distancing. Early in the pandemic, the Assistive Devices Program in Ontario that funds these vital pieces of equipment was deemed non-essential and shuttered. If I catch the virus, workplace safety standards will require my staff to wear non-existent PPE to safely continue to deliver in-home care. If hospitalized, strict visitation restrictions mean 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 a profound isolation—cut off not just from social contact but from the delivery of necessary hour-to-hour care that keeps me safe from a whole host of other comorbid threats to body and mind.
We are told, depending on our ability to flatten the curve, that hard decisions will need to be made about who can and cannot be saved. We may be asked to debate the “value” of a person and determine how productive or survivable one must be to merit receiving care. Those 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 2nd 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 here are a few recommendations derived from my own experiences and from those I am in contact with:
- It is vitally important, in overt and unequivocal opposition to eugenic rationalities, that the Canadian government affirm the rights of disabled Canadians to fair and equal access to medical care and prohibit any value or quality-of-life based triaging of medical equipment or supplies. These types of policies are antithetical to the spirit of the open, diverse and caring country we have tried to build for the past century. And remember, without disabled Canadians the world would not have marathons of hope, a newscaster turned Lt Governor, or the Back to the Future trilogy.
- We must also ensure that, once a vaccine is developed, distribution will be prioritized to those most in need (such as front-line workers and those with underlying conditions) and not purely based on “economic” or “productive” value
- To ensure 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 funding support for increased care needs during this time, as some tasks that would otherwise be manageable independently may now require outside support.
- We must validate in-home care staff and family care givers as vital members of an individual’s health care team, not 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 care givers is critical, including increasing PSW staffing numbers and providing regular paid time off, for recharging batteries or fighting off sickness. Scaling up the number of people working in these roles is critical. This also means a need to re-examine past practices of warehousing disabled people of all ages in medical facilities 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. While many of these services were deemed non-essential in the early days of the pandemic, with hospital resources being redeployed elsewhere, it is important to get these services back online quickly for those who depend on these programs.
- We should reflect on the federal government’s determination that those out of work need $2000 per month, plus up to $1000 in earnings, to weather the storm. Meanwhile, programs like the Ontario Disability Support Program have long expected disabled people to subsist on a little over $1000 per month. Why is the cost to live 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 intended to provide a life for those unable to labour in a physically and attitudinally inaccessible neoliberal capitalist economy?
When I was young, I loved playing with LEGO. While I was not very good at the building part, I was great at tearing things apart. There’s something magical about those moments, not just the wanton destruction but what it signals—in the ruins of destroyed projects lay the building blocks of the next great edifice.
In confronting this existential threat, we must ask not just how we survive today but how to live with ourselves once it has passed. We must consider how our system has left us in the current quagmire. We should think of how to rebuild a country that does not require us to make such vital decisions amidst the wreckage left behind by this pandemic. COVID-19 means the world we knew several months ago is gone, but maybe it’s not all bad news.
What if a post-COVID Canada spent more time enabling people 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 nondisabled employees were extended permanently for employees with disabilities who have been asking for this type of access for years? What if we provided Canadians with the things they needed 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.
