As restrictions loosen up, advocates for people with disabilities say their needs haven't been considered
If you want me to live with COVID-19, make it livable for me, Marya Bangash says
When Marya Bangash, an advocate for people with disabilities, had COVID-19 last January, she says not only did it make her feel like she "was going to die," it also took away the disability support systems she relied on prior to the pandemic.
"While I was going through the motions and recovering, it just felt like all my surroundings that used to help me and be there for me … didn't want anything to do with me," she told The Current's Matt Galloway from Markham, Ont.
Bangash, who uses a wheelchair and is immunocompromised, is the co-ordinator for SMILE Canada, a support group for refugee and immigrant children with disabilities.
She said she's been fighting a lonely battle for her right to live as a person with a disability in the pandemic.
"Because of people's selfishness, I've had to isolate and stay away a lot longer, while others with an average immune system are able to go outside."
It's why she doesn't buy it when some officials suggest it's time to start "living with COVID" nearly two years after the first lockdown in Canada.
"When I see people saying that we have to just live with this pandemic — I can't live with the virus that can knock me out any day now," she said.
She's not alone.
Disability activist Allen Mankewich, who also uses a wheelchair, said public health officials have failed to address the concerns of people with disabilities during the pandemic.
The Winnipeg native believes their inaction is evidence of the discrimination in favour of those who don't have disabilities that Canadians like himself have had to deal with for years prior to the pandemic.
"It's embedded in society, it's embedded in attitudes, it's embedded in systems, it's embedded in policy and it's manifested in many ways," he said. "The insidiousness of ableism has really surfaced through the pandemic."
'A major, major issue'
A recent study published in the Canadian Medical Association Journal looked at 1,279 admissions to seven Ontario hospitals for COVID-19 between Jan. 1, 2020 and Nov. 30, 2020.
Researchers found that patients with a disability had longer hospital stays and a greater risk of readmission than those without a disability.
Hilary Brown, an assistant professor at the University of Toronto who co-authored the study, said it reflects "a real lack of community support" for people with disabilities.
"This really tells us a lot about the quality of care that's needed in hospitals for people with disabilities."
"We know that … essential care providers are often not allowed into hospitals to be with patients with disabilities, and this is a major issue in terms of quality of care."
According to Brown, the study — and the pandemic — speak to broader structural issues that explain why people with disabilities are at "greater risk" for COVID-19.
"The pandemic has really laid bare inequalities that we always knew were part of the health-care system, and this has just made them that much more obvious," she said. "I think it's a major, major issue that's going to need considerable attention going forward."
Part of it is down to the systemic situations that some people with disabilities are thrust into, according to Brown.
"People with disabilities are more likely to live in poverty," she said. "They're more likely to live in congregate care settings and they're also more like to require home care services for people coming into the home to assist with personal care.
"We know that all of those factors are risk factors for being exposed to COVID and therefore increase the risk of infection."
Where's the support?
Mankewich said it's been "really frustrating" watching governments and public health officials "do next to nothing" to support people with disabilities during the pandemic.
"It has been two years. That's more than enough time to make plans to give people what they need to get through this pandemic and to create the conditions to, you know, ease public health restrictions, as they're talking about now."
One suggestion Mankewich has is making sure adequate systems are in place to protect those who work with people with disabilities, such as home care workers.
"One of my friends is convinced she contracted COVID from her home care worker because they're not providing PPE to people receiving home care," he said.
"We need to ensure that people who are receiving home care are safe."
If you want me to live with COVID, you have to make it livable for me.-Marya Bangash
There also needs to be a shift in making vaccination websites and clinics more accessible to people with disabilities, said Brown.
"It's not possible, often, to require those accommodation needs ahead of time related to vaccine clinics — and a lot of vaccine clinics themselves are not physically accessible and don't attend to sensory and cognitive needs.
"So it's a major issue through the entire system. It really speaks to the need to make some shifts going forward."
That need is especially important if the conversation about easing restrictions moves forward, according to Brown.
"If we're talking about easing restrictions, we need to ensure that there are systems and services and policies in place to ensure that people with disabilities are protected, and other groups as well," she said.
That's all some disability advocates like Bangash want.
"You have to make sure that myself and others like me are able to access home care, are able to go to the hospital when needed or able to access appointments, are able to go on transportation safely, whether it be door-to-door service or taking the bus," she said.
"If you want me to live with COVID, you have to make it livable for me."
Written by Mouhamad Rachini. Produced by Alison Masemann and Meli Gumus.