Crips and COVID in Canada

by Esther Ignagni, Eliza Chandler and Loree Erickson

 

On March 11th, the WHO declared COVID19 a pandemic with the potential to claim the lives of hundreds of thousands of people internationally, overpower even the most elite health care systems of the global north, and the capacity to slow transnational economies. As the virus spreads, we are not surprised that older, disabled, and chronically ill people, and, particularly those living in congregate settings are at greater risk. In our own province of Ontario, fatality rates connected to COVID19 are spiking in retirement, long-term care, and group homes. This exposes and intensifies the interaction between neo-eugenics, the social and material vulnerabilities of disability and body-mind difference, and the rub between dis/ablism and compulsory able-bodiedness in care practices.

In what follows we centre our own experiences. We appreciate that at this moment, the immediacy of our material concerns means that we can only proceed from our phenomenological actualities. In our collective case, that is the primacy of touch and visceral interdependence in our everyday survival that allows us to keep our balance, find our way, or get out of bed places us in complicated and contradictory relation with the notion of social distance.

 

#ICUEugenics

Disabled and chronically ill people are being viewed as vulnerable, potentially expendable, and a lower priority, when access to life-saving healthcare and medical equipment are limited (see for example, the Arch Disability Law open letter which describes and responds to an early stage of Ontario’s proposed medical triage protocol regarding COVID19 medical attention). We are also witnessing the amplification of this frame of disposability along interlocking markers of marginalization. Disabled and chronically ill people are repeatedly positioned as contributing to the anticipated ‘surge’ of vulnerable patients flooding ICUs, fulfilling our discursive construction as ‘excess’ and a burden. Our impulse as disabled people may be to reject or refuse this new discourse of vulnerability, asserting our value through meeting the standards of compulsory able-bodiedness: to eschew assistance, to take on new emotional and social networking labour for others, and keep up our own productivity under unfamiliar conditions. Paradoxically, enacting a COVID19 super-crip may leave us fatigued and overstretched, increasing our physical vulnerability. More sinister is the imperative to give up one’s right to healthcare, in a heroic self-sacrifice for younger, ostensibly more productive, more socially connected others. We have already begun to see this happen in reports of older adults passing up treatment so that it would be given to a younger person with a greater potential for a productive and valuable future. In such discourse, ‘productive’ and ‘valuable’ are rendered as such through eugenic logic, operating through structures of colonization, ableism, white supremacy, and cisheteronormativity (Frazee).

 

The Contradictions of Care

 Care under social distancing remains multi-directional, interdependent, and dynamic, layered in ways that are perilous and imperiled. We are faced with challenges produced by the need for physical proximity of our care. While crips are surfacing the ways in which we have survived isolation, seclusion, and separation, and our expertise at creating networks of care at a distance, for many of us care still depends on physical touch. Then, where is the guidance on supporting disabled people to use PPE and maintain social distancing? In the public health direction around the use of masks and gloves, there has been no guidance on how to safely mask a disabled person.

We also wonder about the fate of disabled people who struggle to maintain social and physical distance. There is little support to meet the needs of the older person with Alzheimer’s or the young child labeled with ADHD for movement and touch beyond confinement, behind locked doors, or within the nursing homes surrounded by the metaphoric ‘ring of steel’. The elision for the requirement for crip touch and connectivity means that we have not anticipated the impact of loss of social routines and circles of support that enabled some disabled people to thrive. We must pay close attention to the impacts that these changes are having on disabled people both for the freedoms they preclude and produce. 

For some disabled people, we are navigating the uncertainties of virtualizing care by transferring carefully crafted support arrangements to the telephone and video conference. For example, changing the tasks for those who provide academic accommodations at the university from in-person assistance, such as real-time scribbing, to virtual and less immediate tasks – which we can’t easily identify even for this blog. This keeps those who provide us with access support employed and engaged, but it’s not clear that virtual support can meet our access requirements with the same efficiency as in-person support. At minimum, disabled people are pressed to keep working and construct ourselves as productive in the face of COVID time.

Another question is the impact of hospitals and care facilities not allowing family and friends to accompany a sick individual. For some disabled people, not only does this mean the prospect of interpreting and understanding one’s care without familiar supports but the loss of an important disability advocate as well. Even for members of our faculty team who see ourselves as fierce self-advocates, we need someone with us when negotiating medical systems. Being alone leaves us potentially vulnerable since we are seen as little more than our impairment status, which puts us at risk under medical triage procedures, particularly when access to effective communication is tentative at best. As we move forward into what is anticipated to be a difficult time in Ontario for its people and healthcare systems to unprecedented proportions, we urge all care facilities to advocate for disabled people, both in policy and personnel. Particularly, in light of the proposed triage protocol that may be too open to clinical interpretation about who is deserving or not of emergency intervention.  

We are heartened by the crucial but significantly overdue attention to the economically and socially undervalued labour of personal support workers and other front line care providers. We are unsurprised, but angered that it took their illness, their labour actions – including ‘walking off the job’ – and the deaths of disabled and older people to surface their marginalization.  We are in solidarity with their efforts to resist debilitating work conditions and to challenge the interlocking structures of racism, classism, and ableism that maintain their economic precarity. We urge the increase of their wages, employment security, and attention to their dignity to commence immediately and continue past the imagined end of the pandemic.

 

Crip time in COVID time

It is easy to think that in the midst of a pandemic, we are all a little bit crip. It is also to assert that we are all living in crip time now, as we zoom into meetings, work from home, and prioritize comfort over maintaining an ableist level of professionalism. But we think it is important to maintain that COVID time is not the same as crip time. COVID time is emergency time that has to be endured rather than settled into.  We look forward to the passing of COVID time and try not to get comfortable with our new reality. Crip time, in contrast, is planned, built collectively, maintained, and sustained. Crip time offers hospitality much like Mia Mingus’ (2017) access intimacy, Carmen Papalia’s open access (2018), and our own understanding of access as an iterative process (2018). As Arundhati Roy articulates, COVID time is a portal bringing us from one reality to another from which we cannot return. 

COVID time then offers the opportunity for crip hope. We can hope that some of our adapted practices taken from disability culture, including access practices, will stick around outside of the disability community after COVID time. For example, the practice of checking in with each other regularly. Similarly we can hope that crip insights will manifest into social transformation such as better conditions for workers and renewed critiques of congregate residential settings. COVID time might allow a particular kind of crip world making that engages crip practices that may have seemed impossible five weeks ago. At the same time, we must remember that this is not the time of promise and innovation because any crip hope carries, as it always does, the threat of death.