CW: Mention of possible institutionalization due to mental health concerns

Disabled people across the country are working to support each other during the pandemic by filling the gaps left behind by federal and provincial programs through solidarity and mutual aid work, like food drop-offs and collaborative advocacy.

For many, a core issue is the lack of supplies. Mike Bacon is a co-owner of Saskatoon’s URO Medical, one of the only medical supply companies focused on disabled people in Saskatchewan. He says his clients are being put at risk of preventable infections, in addition to COVID-19, without access to supplies like wipes and sanitizer. Individuals on the province’s provincial healthcare program for disabled people are limited in what they can order ahead, presenting a concern for many.

“The risk for infection, whether it be bladder or just a general wound infection definitely increases without these products.”

He says the community is rallying to inform the government about their concerns.

“I’ve had clients willing to write emails to whoever might need to hear about what they see as an issue in the community, so they’ve been contacting the Office of Disability Issues in Regina.

Mutual aid groups, where people collaborate to share resources and meet the needs of members who fall through the cracks when it comes to food security or health support, have come to the forefront during COVID-19. Many of these groups, including local Caremongering chapters on Facebook, are not explicitly listed as being disability-led, though often describe themselves as having a focus on “the vulnerable.”

Shae Sackman says that as someone looking for support, getting help from those with disabilities is often a much less taxing experience than getting help from non-disabled people.

“The biggest difference when I’m talking to people [with disabilities] is that I don’t have to do the work, I don’t have to provide endless context for why this is a problem, why this is problem, why this situation maybe isn’t the greatest option [. . .] When you’re dealing specifically with disabilities, expecting someone with some kind of disability to have the time and energy to provide that context, whether it be for people who are legitimately trying to support you, or services or institutions, is really, really tough. A lot of the situations that I’m in right now involve me having to explain why a $50 COVID-19 credit on my benefits, why that’s irrelevant, why that doesn’t matter.”

Many disabled people see the top-ops being provided by some provinces as a minimal band-aid solution, which does not come close to meeting their needs. Increased food expenses, including delivery charges for those who need it, along with the increase in medical supply costs are causing disabled people to fall further into poverty.

Shay Erlich and Jen Roy are the co-founders of The Cyborg Circus Project, an Ontario-based disability-led dance circus and dance company that has shifted their focus towards providing mutual aid for their participants since the outbreak of COVID-19.

Erlich says that shifting to a mutual aid focus has meant following the foundational teachings of disability or crip culture.  

“I feel like in some ways it’s not all that different from what crip communities have been doing for forever. We are pretty used to the reality that most governmental programs or NGOs don’t meet our needs, and so we have always had to make do in community for ourselves. And so I think that in the time of COVID-19, the needs that we have are different, and we are generally even less able to rely on the government or NGOs than we’re used to, and so that presents challenges. But I don’t think that the concept of needing to provide mutual aid, of  needing to support one another, of needing to be constantly asking ‘what are the needs that are in our communities, and how do we meet them, and what resources do folks have to share.’ Those questions are just as natural as everyday living is for disabled communities.”

Many disabled people have been providing supports, including this set of COVID-19-specific resources, by Rebel Black. Programs instituted by Cyborg Circus include sending art supplies to participants, collaborating with FoodShare, a Toronto-based food security organization, to ensure their community has nutrition access, and providing technological equipment to, as Erlich puts it, “make things more bearable.” This is in addition to establishing a peer-support network.

“We have pivoted a lot of our programming to focus from being predominantly an arts-based space to recognizing that security is a necessary precondition for being able to create art [. . .] I feel really lucky that we were able to have one last meeting with our group in person just before everything started to shut down and that we were able to have one last time to meet in person and say, ‘Okay, things are about to get really kind of wild here, what do we need to get through that?’ And then we started to put plans in motion very, very quickly.”

The organization is planning to start a fundraising campaign supporting those who need personal support workers. Both artists say that people in their community are being hit hard by reduced services from the healthcare system because of staffing shortages and that organizations like FoodShare and Hamilton’s Disability Justice Network of Ontario are doing work that prioritizes the needs of marginalized people during this crisis. Both also mention situations where the lack of access to crisis-level mental health supports that avoid institutionalization, scenarios such as being detained by police at emergency facilities, have been impacted. This has led to them navigating how to support people, while also keeping them safe from COVID-19.

They say housing is an area of concern. Landlords have been pressuring tenants to leave the safety of their house, despite the suspension of evictions in many jurisdictions. “You can’t just harass someone because you want something illegal,” Roy says, in hopes landlords might get the message. Erlich also hopes the concerns of disabled people living in long-term care homes are heard.

“What a lot of folks don’t know is that calling them long-term care homes is a way of hiding the fact that there’s a lot of younger disabled people who live in those homes all across Canada and they have now been completely cut off from the outside world.”

“These are the folks that have always needed someone who is not disabled to go with them to the hospital and advocate that this is a person who is worth saving, this is a person who is worth something to someone.”

With the myriad of concerns facing the disabled community, Sackman says that one thing mutual aid group leaders who aren’t steeped in the lived experience of disability can do to support the community is make way for leaders who don’t often get the chance.

“Make sure that you’re cool with stepping aside and empowering someone with that lived experience to do that job. People with disabilities are not often given leadership opportunities, they’re not able to get leadership opportunities and so I think that understanding how to facilitate that and let that happen is something that is missed all the time.”

Very few non-profit organizations in Canada, even the ones servicing disabled people’s needs, are led by disabled people. This is a concern for those trying to engage with mutual aid groups who do not see themselves represented.

Erlich says that the leadership that is in place in these groups needs to have a strong grounding in the basic ideological foundation of mutual aid.

“I’ve seen things turn into dog piles of people being like, ‘You asked for something two days ago and now you’re asking for something again. What’s going on in your life that you keep having needs?’”

“I think that moderators [of online mutual aid groups] could do a better job of sort of front-ending the education component of what these groups are for and that the intention of these groups is about equalizing access for resources.”

Roy says one of the concerns they have about these groups is when they see abusive behaviour towards disabled people asking for help.

“I’ve seen it take a lot of time for admins in these groups to shut down really harmful threats that are quite anti-poverty towards disabled people when disabled people are just asking for advice on if this program includes them, since they don’t feel like their needs are included in the programs. Because they aren’t.”

In terms of those who have brought their programming online, Erlich and Roy noted examples including some integrated dance companies, meaning dance groups that engage both disabled and non-disabled company members, moving their initiatives online, as well as organization such as Toronto’s Miles Nadal Jewish Community Centre. But Erlich says that disabled people are very at-risk of being left behind if there is not more mutual support.

“I feel very concerned that, when the dust settles on this, the stories that are going to emerge are about the folks who were denied medical care because it was all happening under the shadows of COVID-19 and there was nobody who could be there to support them.”