For some, we are entering a dystopian-like era, with pandemic and zombie movies feeling uncannily familiar. In May 2020, the BBC noted that the public has had an increased interest in dystopian fiction as a way to cope or understand the pandemic. But, if we really want to learn about how to survive this newfound dystopia we live in, we need to turn to disability justice activists for the knowledge and skills they can share.
As Patty Berne from Sins Invalid, a San Francisco-based disability justice collective, explains in her essay “What is Disability Justice?” in the book Skin, Tooth, and Bone: The Basis of Movement is Our People, disability justice moves beyond just garnering rights for disabled people and focuses on finding alternative solutions to the systems that create inequity and building new futures. Now that the pandemic has illuminated the cracks in our systems that have been failing us in an almost undeniable way, we need those alternative solutions in an immediate way.
Being a part of the disabled community, I knew that there were lessons we had to share if we wanted to have a chance at turning this dystopia into a utopia. So I spoke to other disability justice activists about what it means to live through disaster, how disability justice prepared them for this pandemic, and what shiny new futures we could be building.
For marginalized groups like the disabled community, our world has been a dystopia long before COVID-19 developed into the widespread issue that it is now. That has given us the advantage of not being caught by surprise by the lifestyle changes that the pandemic has imposed on society.
“This isn’t a dance I haven’t had to dance before,” says Rachel Romu, a disabled model and activist known for walking the catwalk at Toronto Fashion Week, and also one of the first activists who encouraged me to get involved in my own activism.
They are referring to the isolation and inaccessibility that many are experiencing for the first time in this pandemic. Romu is used to socializing and working remotely; they’re used to using food delivery services and having to make choices for the sake of their health.
And this is a sentiment that seems to be echoed from across various different disabled experiences. “I’m used to being isolated,” writes Sage Lovell, founder of Deaf Spectrum, a Deaf-led, Toronto-based organization that provides ASL interpretation and resources. “Like, I didn’t have much of a social life pre-COVID. I was always working and saving up money. And growing up, I’ve always been on my own, being around a hearing-dominated environment.”
Even so, being prepared doesn’t mean that the disabled community is less affected mentally by it. In fact, the response to accommodate COVID-19 safety guidelines ended up highlighting just how little effort was previously put into finding these same accommodations to include disabled people into society, such as remote access to work and social events or grocery delivery.
“It’s frustrating because pre-COVID, I had to travel a lot and even suggested to video call once in a while. But folks always needed to meet in person,” explains Lovell. “Now with COVID, we’re meeting online.”
“I feel like part of me is built for this, but part of me is struggling,” says Romu.
For many marginalized people, disaster and apocalypse are not one-time or future events, but historical, ongoing, and recurring, according to Aus (who prefers to go by their first name only), the founder of The Wheelhouse, a community centre in Toronto for and by marginalized people, and a facilitator of disaster preparedness workshops. They pointed to a theory from Lawrence Gross, the Chair of Native American Studies at the University of Redlands, called Postapocalyptic Stress Syndrome as an example. For Indigenous peoples, they have already experienced mainstream apocalypse tropes such as invading forces and outbreaks of disease. Therefore they also have to create and imagine the new worlds they need to survive.
Activists from oppressed groups already have the experiences to learn from and improve upon, if we as a society would pay attention.
Speaking with other disability activists, one thing became very clear to me: we approach our own health, as well as public health, in a very different way to our nondisabled counterparts, even and especially, pre-pandemic. As Romu puts it, we have to find “adaptive ways to do prophylactic self-care” instead of just responding to issues as they arise.
However, the Government of Canada’s response to the pandemic, as well as much of our healthcare system, has been criticized for lacking any real preventative measures. In fact, in 2017 Ontario’s Provincial Emergency Management Office had already noted in a news release from the Office of the Auditor General of Ontario that the province was not prepared for an emergency. But there’s more chance for success if you’re prepared for the worst-case scenario.
“There’s a layer of setting yourselves up for success instead of failure or disappointment too,” explains Romu. “It’s like being prepared to make the most of the time you are using in that minute, and sort of prioritizing what’s your number one need … how are you going to meet that and how can you meet that safely or accessibly.”
This is a strategy that is rooted in Spoon Theory, a term coined by Christine Miserandino to explain the process by which disabled and chronically ill people have to plan and prepare to manage their energy and pain to meet their daily needs.
According to Aus, Romu, and Lovell, what that would look like on a governmental level would be ensuring that people had the type of income they needed to stay home and isolate, ensuring that all people were housed, and providing access to medication
A major focus of disability justice activists is to move the onus away from the individual and more onto the community as a whole.
There are several models that are used to understand disability. One model is the medical model, which understands disability as a problem within an individual that needs to be fixed or cured. A contrasting model, however, is the social model, which understands disability to be the way in which our physical and social environments are designed to exclude certain people.
While disability and the pandemic are more nuanced than either of those models can describe, there is something that Aus refers to as “the burden of preparedness” that is placed on disabled and other marginalized groups because of the individualist nature of our society.
And as Romu points out, that is reflected in our response to COVID-19. Instead of ensuring that people can stay home and prevent exposure, there is only emphasis on wearing masks and keeping distance. While that is necessary, we need to move beyond an individual response to a major crisis.
They continued on to explain that we can’t blame individuals when not everyone has the same access to resources to be able to isolate, access masks, and do their individual part.
“Financial inequality is a big factor in who’s going to get sick and die or not, who is going to stay home or not, who is going to be able to have a room to isolate in or not,” they say.
Instead, we should be building systems that allow us to work as a community to respond to emergencies and trauma. This is something called interdependence, or community care, which are major tenets in the work of disability justice activists such as writer, educator and trainer of transformative and disability justice Mia Mingus.
Mingus helped develop the idea of “pods” and “podmapping” years before the pandemic started. Pods were the relationships that one could turn to when in need of support. When lockdown protocols began affecting North America and social contact was suddenly limited, Mingus’ work on pods grew in popularity alongside the idea of “social bubbles” because she had already developed a foundation that could be built on further.
The beauty of apocalypse and dystopia is that it gives us the opportunity to disrupt, dismantle, and change the systems that are currently in place.
As Aus puts it, “We see everywhere in apocalypse fiction ways in which the world is gonna end, because that’s what people love to fixate on. But we very rarely see ways that the world starts.”
Instead of trying to return to our “old normal,” we should be taking this time to adjust our society to incorporate these concepts into how we function. We need to change how our schools, workplaces, and other institutions function.
One example is, as Aus describes, “unraveling the entire culture of nine to five work.” Or, to use another concept from disability justice, adopting “crip time,” a more flexible approach to timeframes—the idea being that we incorporate more rest time and more leeway into our schedules, instead of trying to adhere to rigid deadlines and workdays.
And instead of trying to reopen schools and force a “return to normal” before the appropriate measures are in place to control this pandemic, and other future public health crises, we should be changing how those institutions work. Remote learning
and remote work should be available even after lockdowns lift and a vaccine is distributed.
And as we manage with the repercussions of this pandemic, we should follow at least one principle of disability justice, and that is to follow leadership based on the most impacted. When disabled and other marginalized communities are foreseeing potential danger and offering alternatives, we need to pay attention and make use of this vital source of knowledge and wisdom. Once that happens, we can finally move out of this dystopian landscape and start building a utopia.