‘Let me drive the bus:’ People with disabilities want inclusive COVID-19 reconstruction

Systemic barriers have become life-threatening during the pandemic
Photo: Photo by Kate Williams on Unsplash
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For many people with disabilities, social isolation was the norm long before COVID-19 arrived. But they have still experienced a bumpy adjustment as the pandemic both exacerbates challenges and increases accommodations.

As an autistic person and wheelchair user, Riki Entz understands this tension better than most.

Sitting in a small apartment that has lost balcony access due to construction, Entz recalled a period when the space was even more claustrophobia-inducing.

Due to a potential exposure to COVID-19, Entz and their partner — who is also disabled — had their care hours significantly cut for two weeks. While the couple was able to support each other to take showers, they couldn’t access the shared laundry space and they quickly ran out of fresh clothes. They struggled to clean their apartment, and their recycling and garbage started to pile up.

“It was so overpowering. It was overwhelming. I’m just getting emotional thinking about it,” Entz said, their voice cracking.

Around the same time, getting groceries became an “impossible” task as more people started to rely on online and delivery services, making it harder to put in orders.

Riki Entz
Kat Lam

But Entz, who is an accessibility associate at a Deaf and disability theatre company, also said that the pandemic has significantly improved their relationship with their employer. The slowed-down pace also allows them to better balance their work and health — previously, they felt they were “doing a non-ideal job” of juggling each aspect of their life.

“I spent 11 hours trying to find groceries so my boss was like, ‘Oh, can I help you deliver groceries?’ Our work randomly had gloves around so my boss brought gloves over for us,” they said.

“I’m getting a lot more of that community care in places that I’ve been begging for a long time and I think that’s what’s making the big difference.”

Entz is anxious about what the future holds for their community — a sentiment shared by other people with disabilities. But some also hope that the post-COVID reconstruction can create a more inclusive society, as the pandemic underscores messages they have long advocated for regarding the intersection between poverty and disability, the importance of care work, and value of their expertise.

Not a temporary situation

Across Canada, provinces have started to reopen, and people are resuming visits with friends and family. But many people with disabilities say intensive physical distancing is not a temporary situation for them.

Bára Hladík, an immunocompromised writer and human rights officer at the DisAbled Women’s Network Canada, finds herself “more isolated” now that distancing measures are being eased.

“It makes me feel incredibly unsafe to be in public,” she said.

“Before, going in public, everyone was really careful. ... Now, it’s harder to track.”

Hladík added that this issue is compounded for people of colour with disabilities, as interconnected challenges around race have been shown to increase COVID-19 risks. For instance, Montreal’s data shows areas with immigrants, refugees, and lower-income people have faced some of the hardest hits. Similarly, while there is no official race-based data for Toronto yet, a Global News analysis indicates that Black communities in the city have been disproportionately impacted.

“All these systemic barriers are now life-threatening, so they need to be changed and reassessed.”

At the same time, some community members worry that the return to more in-person interactions will result in the scaling back of accessible offerings like virtual social events, online grocery deliveries and remote working.

These sweeping rollouts of accommodations, however, have also been bittersweet.

As people with disabilities noted, event organizers, schools and businesses have been able to implement support measures to address disruptions to the routines of able-bodied people during the pandemic. In contrast, many of these same institutions have often declined or only partially fulfilled accessibility requests from people with disabilities. In 2017, around 40 per cent of those who needed workplace accommodations had either none or only some of their needs met.

“All these accommodations obviously can be implemented very quickly if there’s impetus and motivation to do that, so it is frustrating,” said Ziggy Norberg, a recent college graduate who was born with spina bifida and is paralyzed below the knees.

“But on the flip side, hopefully coming out of this, that’s just going to be the new normal where there are these safety nets and different accommodations, and we’re rethinking the way we do things to make them more accessible.”

Gaps in financial support

Community members and experts also emphasized the intersection between poverty and disability.

According to a Statistics Canada survey, 22 per cent of the Canadian population age 15 and above in 2017 had at least one disability. Among this demographic, people with more severe disabilities, women, single parents and those living alone are more at risk of poverty. Though not outlined in this survey, community members noted that people of colour with disabilities likely also see an increased risk due to additional barriers created by racism and colonization.

While many receive disability benefits, the pandemic has put the spotlight on gaps in their financial support. In particular, the Canadian Emergency Response Benefit (CERB) — available to those with an income reduced to less than $1,000 per month because of COVID-19 — provides more monthly income support than disability benefits do.

“CERB provides $2,000 a month, which is obviously what they think a basic income is,” said Dr. Timothy Stainton, director of the Canadian Institute for Inclusion and Citizenship. “If that's the case, then why is disability income only around $1,200 a month?”

And because disability support programs largely fall under provincial authority, he said disability benefits are “really inconsistent” across the country.

“We could have prevented this crisis if we were just more willing to develop a society that appreciated the labour just by how we pay for it.”

B.C. and Ontario provided just under $1,200 per month for single individuals with disability before COVID-19, and New Brunswick gave around $820 monthly when also considering tax credits. Yukon, the Northwest Territories and B.C. are the only jurisdictions not decreasing social assistance income for CERB recipients, despite the federal government advocating for all provinces to exempt CERB funding from clawbacks.

But Hladík pointed out that CERB still has many gaps that leave some individuals relying on the smaller provincial disability benefits — even as provinces like B.C. are temporarily topping up the amount — during the pandemic. She wants a universal basic income program, or an increase to disability assistance and the maximum amount of income people with disabilities can make while receiving benefits.

“All these systemic barriers are now life-threatening, so they need to be changed and reassessed,” said Hladík.

Stainton also emphasized the need to address the exclusion of people with disabilities from employment due to ableist hiring attitudes and inadequate workplace support.

In 2016, 59 per cent of people with disabilities between 25 and 64 years old were employed, compared to 80 per cent of people without disabilities. For people with disabilities, 76 per cent of those with mild disabilities were employed, but the rate dropped by more than half for those with very severe disabilities. On top of these factors, some might face added difficulties due to discrimination around race or gender.

“Employment is not just about money — it's about self-respect and self-esteem,” said Stainton. “It’s a complicated business and it’s not one we’ve solved yet.”

Caregiving as essential labour

The value of care work is another important issue in discussions about inclusive reconstruction.

The pandemic has put a strain on care for many people with disabilities, as personal support workers have had to limit themselves to one facility. While some say that they can rely on family in the meantime, others point out that caregiving is hard work — especially if the tasks fall on elderly parents.

Some people have also faced difficulties sourcing personal protective equipment for their caregivers.

“It’s this complicated thing where we’re funnelling all of our care workers into very specific situations, but that means we’re taking them away from other people,” Entz said.

Given recent explosive reports about terrible conditions in long-term care homes due to shortages of staffing and resources, this rationing of care is also a major issue for people with disabilities who are institutionalized.

But this crisis is not new, and community members said they have called attention to it for years.

“For people to be saying that they’re surprised or shocked by the lack of care that the individuals are receiving, the community’s been yelling pretty loud about this already for years,” said Paul Gauthier, executive director of the Individualized Funding Resource Centre Society.

But some changes came only after policies led to the deaths of people with disabilities.

Gauthier also pointed out an underlying problem in how often people with disabilities are being “warehoused.” In Ontario, thousands of people with disabilities under 65 are being placed in nursing homes due to the lack of accessible housing and resources to provide sufficient care at home.

“With the appropriate support, people with disabilities live very well in the community and they actually participate,” he said.

“But when you’re stuck in four walls, there’s not much you can do.”

A community advocate with cerebral palsy, Gauthier works to make independent living more accessible to people with disabilities in B.C by guiding them through individualized funding programs. Instead of relying on funded agencies to provide care staff, people with disabilities can receive the funding directly to hire their own personal caregiver.

“The bang for the dollar in being able to actually hire somebody with the skills and the personality and the flexibility that you’re looking for, you get a lot more value,” he said.

But regardless of the setting, community members stressed the need to value caregiving as essential labour by investing more in services and support workers.

“We could have prevented this crisis if we were just more willing to develop a society that appreciated the labour just by how we pay for it,” Entz said, also pointing out that “so much of that labour comes from immigrant and migrant workers who are now worried about their immigration status.”

‘Nothing about us without us’

In all conversations with Ricochet, people with disabilities put a clear emphasis on the messaging of “nothing about us without us.”

The federal government looks like it may be heeding the message.

In April, it established the COVID-19 Disability Advisory Group with 11 community experts to advise Minister of Employment, Workforce Development and Disability Inclusion Carla Qualtrough on challenges and approaches related to people with disabilities.

On Monday, the federal government announced $6.4 million in funding over three years to “develop best practice tools and resources in the areas of accessible workplaces, accessible service design and delivery, and communication.” The money is allocated to 16 organizations, some of whom are part of the advisory group.

“There is a crucial role for the Government in continuing to help break down barriers to ensure that everyone has an equal opportunity to succeed and contribute to our society,” said Qualtrough in a press release.

But some changes came only after policies led to the deaths of people with disabilities, as in the case of Ariis Knight, a woman with cerebral palsy who passed away alone in a B.C. hospital in April. Following outcry from community members and advocates, the provincial government updated its hospital visitor policy in May to allow the attendance of caregivers, whom Knight would have relied on to communicate.

“We’re very happy through lots of hard work that we have an updated visitors policy,” Gauthier said.

Still, he said he is anxious about ensuring that the post-pandemic reconstruction won’t come on the backs of people with disabilities. Other community members also echoed this sentiment, saying society needs to include, value and pay for their expertise and perspectives.

“In this post-pandemic world, we have two choices where we can focus on rebuilding it to be this economy-focused world or we can focus it on looking at what created this mess in the first place and making us stronger,” Entz said.

“Are you going to throw me under the bus, or are you going to let me drive the bus?”

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