Disability, Creativity, and Care in the Time of COVID-19 by Aislinn Thomas
Over the past weeks and months, as a novel coronavirus transformed into COVID-19 and now a full-blown pandemic, I’ve been struck by how chronically ill, Mad, Deaf, and disabled people are in a unique position. We are experiencing increased vulnerability, but, at the same time, our ingenuity, knowledge, and genius skills are suddenly relevant to the rest of humanity. Here are some thoughts.
Intimacy with interdependence
Individualism is an illusion, and a dangerous one. Those of us who require daily support and care are intimate with our interdependence and the contingent nature of life. Bootstrapping rhetoric is harmful. We do not have full control over the conditions of our lives. We are acutely aware that we are, all of us, always reliant on others for our survival and thriving. We are connected. We are vulnerable. We need help sometimes or often. This does not diminish our value.
Care vs profit (& patriarchy)
With the recommendation of social distancing and a tanking economy, many are realizing how profit, efficiency, and economic growth are in stark conflict with personal and collective care and wellbeing. This conflict is not new. It is ever-present and for so many of us it is a daily, inescapable part of our reality. Disabled and chronically ill folks live in bodies that defy efficiency. We do not operate according to the capitalist logic of productivity. We create friction in an economy that aims to be frictionless – that is, when we are able to access and participate in it. So many disabled people are unemployed or underemployed and poor as a result of systemic barriers and stigma. As Mia Mingus points out: “ableism and capitalism are bound up together.”
We are all being asked to practice social distancing as an act of care for the most vulnerable in our community. The work of care is real and of utmost importance. And yet prioritizing it for a few weeks is causing complete economic upheaval. So much daily care work is invisible, unpaid, and undervalued because it exists outside of the economic system. It is also gendered. Khara Jabola-Carolus (@PolishedJaded) notes that we are not only witnessing the widespread harms and violence of capitalism made visible, but a disaster that is also a result of (cis-hetero, colonial, racist, ableist) patriarchy.
No one left behind
As Leah Lakshmi Piepzna-Samarasinha has written about so eloquently in her book Care Work: Dreaming Disability Justice, care is not a feeling but an action. We don’t do the work of care only for those that we like or get along with. It has to be more radical than that. Everyone is deserving of care. No one left behind.
And yet, we hear the frequent refrain that COVID-19 “only” endangers disabled people and elders. Author and activist Dorothy Ellen Palmer calls this out for what it is: “the dirty underbelly of ageism and ableism.” A full quarter of the population is disabled. Fifteen percent are seniors. If you don’t already know and love a disabled person or elder, you really should. We’re great.
Being apart, together
We have a new vocabulary. Yet so-called self-isolation is practiced at many times by many people for many reasons. Those of us who face systemic barriers to public spaces, who are chronically ill, who are in pain, who spend a lot of time in bed, who are intimate with our own interdependence, we have precious survival skills, we know how to be apart together, and we practice creative ways for staying connected and fed. Keeping a distance doesn’t have to mean being distant.
You may be practicing some of these skills. You may also be experiencing how difficult it can be to stay at home, even for a short, limited period of time. Many crip folks also struggle, especially if we aren’t connected to a mutual aid group or don’t have a robust social network and an abundance of relationships of care in the places where we live. Many of us could use your support now and when social distancing is no longer the norm.
Of course, some of us are unable to self-isolate: we work low-paying jobs that are revealed to be essential services, or we require personal support workers and attendants to help us with our daily care. All the more reason for those who can to do their part to take it seriously.
(A small PSA: When social gatherings are once again sanctioned in the future, we would also appreciate you sharing the labour of making those gatherings accessible to as many people as possible. This includes prioritizing access in your event planning from the beginning and listing access information and contact names/numbers in the promotion of events. Thank you.)
Also, we now know that we can do so much virtually, at a distance. Please consider including those options going forward and making flexibility part of the culture of your workplace. Some of us will still be at home when this is all over.
Make no assumptions
Invisible disability is real. And so many disabilities (invisible and otherwise) are dynamic and contextual, or even episodic. It’s impossible to know by looking at someone what they may be experiencing or need, or how they prefer to communicate.
Levels of fear and anxiety are currently high and being expressed in all sorts of ways. We don’t know what others are experiencing unless we ask. And when you do ask, remember that we are each the best authority of our own experience and needs (this can include needing to set boundaries). Listen and believe us.
Another PSA: Some of us wear N95 masks in public space. We did so before COVID-19, do so now, and will continue to do so after the threat has passed. We are not contagious or squandering precious supplies. Though if we were, we would still be deserving of kindness and compassion – radiated from a safe, minimum two-metre distance, please.
Being with uncertainty
I often say that all bodies are unpredictable, though some more so than others. Many of us with chronic pain and illness cannot anticipate how we will feel or what we will be able to do on any given day. Many of us rely on unreliable things like WheelTrans, working TTC elevators, and the presence of comfortable seating. We also face uncertainty (and so much labour) navigating systems and situations: How will my access request be received? Is this doctor going to fail to accommodate me again? Are they giving me the runaround? Will they be understanding that I can’t make it today?
We try to find the people and community who can help support us through tough situations. We are forced to learn to be responsive, nimble, and willing to change plans or find a workaround with very little notice. Not all of us always have the privilege to do whatever necessary to be well (cancel, reschedule, miss work) and may have to push through with terrible consequences to our wellbeing. We have had to learn to be endlessly adaptable in the context of systemic barriers, vast inequality, and widespread ignorance.
We can figure it out (with a little creativity)
When I’m in crip spaces, I don’t have to explain the importance and necessity of my access needs. I don’t have to hustle for my worthiness. There is an unquestioned, shared understanding that (a) everyone’s needs are important and (b) we can figure out how to meet them. This isn’t always easy. Universal design would like to have you believe that what is good for one disabled person benefits everyone. But access needs come into conflict all the time.
Because we each understand the pain of exclusion, there is usually a commitment to the importance of each person’s presence in the room. There’s a trust that we can figure it out. Creating access can require financial resources. Things like ASL translation and elevators undoubtedly cost money, yet so much can happen with a little thoughtfulness and creativity. Artist Carolyn Lazard advocates for a DIY approach to access. Her workaround for the barrier of gendered washrooms is one of my favourites for its simplicity and effectiveness: just tape a sign on the door over the existing one declaring it an all-gender space.1 I’ve had Skype meetings over text, eaten meals with others in the dark, and shared fragrance-free personal care products ahead of a meeting, just so that we could be together. Doing the dance of figuring out access stuff with other disabled people is one of my favourite things to do.
I don’t experience or expect the same level of trust on a large scale – ableism is too much of a thing2 – but I dream of a future in which everyone is valued equally, one where we can name the things that get in the way of an ethic of committing to figuring out a solution that leaves no one behind. As a species we are capable of bringing such creativity to the problem-solving involved in even the most complex and uncertain contexts – especially if we can broaden the confines of normalcy (see below).
Divestment from normalcy
This is a view of the covered fire escape attached to my apartment. My partner’s work clothes are on clothes hangers hanging off his bike, which is suspended upside down from the ceiling. It’s difficult to see, but there is also a dress I was wearing when a relative hugged me last summer, soap that was supposed to be fragrance-free…all sorts of things.
I’ve been reflecting lately about how trying to pass as “normal” (for my own comfort or others) holds me back from wellbeing. I had a moment recently where I stepped back and failed to recognize my own life. It feels at times like I’m living in an alternate reality. This fall I had to radically transform my already weird home space. I began reacting to the second-hand fragrance and chemicals my partner picked up at work and other public spaces, and we had to devise new strategies pronto. Now we sequester work clothes (and other compromised items) on a covered fire escape and have a complex ritual for when my partner comes home. Having no balcony or backyard, I now offgas small items like books (and, ironically, my respirator) by putting them between the glass and window-screen outside the windows in our apartment.
This is the view from one of my apartment windows. It looks onto some houses across the street. Sandwiched between the glass and the window screen outside are two objects: a half-face respirator and a piece of black foam that is a windscreen for a shotgun mic.
When being or seeming normal is no longer the priority, or when I attempt to stretch its definition, I can respond freely (and creatively) to the realities of my crip, ill, neurodivergent self to find ways and approaches that actually work for me. This can be a liberatory process. It’s also a privilege. Normalcy is policed in public space and transgressions by some bodies are seen as more threatening than others. As friend and artist Carmen Papalia reminded me recently, being “normal” can be a comfort. If you have the privilege to do so. I don’t begrudge anyone who chooses to do so. Yet, working against the regime of normalcy is work that those of us with privilege can do in solidarity with the most marginalized. There is safety in numbers.
***
While non-disabled folks may be having some of the basic insights shared by disabled, Mad, Deaf, and chronically ill people, it’s important to remember that unequal power dynamics remain. Lack of agency and lack of dignity remains. Openly owning disability as a political identity in an ableist culture can be affirming. It can also increase discrimination and negatively impact one’s material circumstances leading to frustration, struggle and even shame.3 I find solace and strength in all my disabled peers (past and present) who continue to care for each other and continue to struggle and survive.
I want to name and affirm that this is a scary time for all of us. And I want to name and affirm that it is an especially scary time for those who are not seen as valuable, who are experiencing re-traumatization, who cannot trust that they would be deemed worthy of saving, who experience the medical system as hostile,4 and who are marginalized in countless other ways. Please, let’s be there for each other. Now and always.
Aislinn Thomas is an interdisciplinary artist whose practice includes video, performance, installation, and text. Her recent exhibitions include the WRO Media Biennale in Wroclaw, Poland; and commissioned projects for the Kitchener-Waterloo Art Gallery and the Walter Phillips Gallery at the Banff Centre for the Arts. You can learn more about her work at aislinnthomas.ca.
Footnotes
- Carolyn Lazard, “Conditions for a Speculative Access,” conference presentation. Running with Concepts: The Empathic Edition, Blackwood Gallery, March 11, 2018. See also Lazard’s publication, available free online, Accessibility in the Arts: A Promise and a Practice.
- Ableism is broadly understood as discrimination against disabled people. Talia Lewis’ definition of ableism, however, explicitly names the role of anti-black racism, colonialism, and capitalism in ableism.
- Thanks to Carmen Papalia for thinking through this point with me as well.
- Andrew Gurza, a disability awareness consultant and founder of Disability After Dark, was interviewed on the CBC podcast Front Burner and spoke about how and why he feels safer at home than in the hospital.