Written by Nick Herd, Doreen Kalifer, and Robin Arnott
January 2022
Right now, the barriers facing people labelled/with intellectual disabilities are more than just inequitable — they are dangerous. We are concerned and we are not alone.
David Leprofsky, law professor and chair of Accessibility for Ontarians Act Alliance (AODA) told the CBC: “The Ford government too often has taken a one-size-fits-all approach to its emergency planning, assuming that people have no disabilities” (Williams, 2022). Activists agree, noting that the 2.9 million people with disabilities in Ontario are being left out of the pandemic response (Williams, 2022).
It makes me feel worried because we’re part of the community as well.
— Sean
The conditions of Ontario’s long-term-care homes have been exposed, however, younger disabled people living in care feel as though their needs are being overlooked. DiStory partner Sean, said: “I think they [the government] should talk about group homes instead of just long-term-care homes. It makes me feel worried because we’re part of the community as well.” Marie, a survivor from Huronia Regional Centre (HRC) and partner of DiStory, is upset about the treatment of labelled people, she said “They should be treated with more respect, like human beings, they’re not animals and they’ve got feelings too like everybody else.”
Some of us living in our own homes also feel excluded from the dialogue. “People need to see what’s happening with this crisis, it’s unbelievable: they just stand there dead line. I find it hard that people don’t want to listen” said Cindy, also survivor of HRC and DiStory partner. Harold, another DiStory partner and survivor of HRC, feels silenced because of his voice, he said: “People have learned to speak differently, and they can’t help it. The government never listened to us, they just put money in their pockets.” Others feel silenced because their viewpoints differ from the ones we typically hear about. Pat, survivor and DiStory partner, shared “Well I don’t know if I’d be allowed to share my views because it doesn’t fit the narrative.”
We need to get them to listen to us.
— Harold
Needs Unmet
Healthcare resources have been stretched and staffing shortages, combined with community restrictions, have resulted in limited programming and support services. Basic needs have gone unmet for some labelled people. “People don’t realize, people in group homes need to go out and buy stuff and they can’t” said Harold.
The balance between the needs of healthcare workers and the population they support can be tricky, and Sean understands that everyone’s needs are important: “I only get 25 minutes to go out and come back. I see where the staff are coming from because they go home, and they don’t want to get their kids sick.” Another younger partner of DiStory, Kevin, has felt stuck because he has had to put his goals on hold, “I want to get a job, outside of my home. I want to get a paid job. It’s harder to get a paid job when you’re at home.”
Lives Threatened
Securing access to healthcare resources can be challenging for labelled people, particularly those with limited mobility. For instance, vaccination sites are often crowded and there are long wait times for appointments. In a CBC interview, wheelchair-user Catherine Gardner said that there is typically no seating at these locations, and “If you’re using a mobility device, a cane, walker, you just can’t stand in line that long” (Williams, 2022).
Doreen, survivor and DiStory partner is 72-years-old, and she has been having trouble accessing everything she needs to: “It’s a danger for seniors as well, especially with the snow. They don’t plow it right, they just do what they need to do [to] not get sued, that’s it. How are we supposed to be careful when people just don’t care anymore?”
What’s the government doing for us? What are they doing right now?
— Kevin
Transportation to pop-up clinics presents its own challenges, due to booking systems that typically require rides to be booked 48-hours in advance. John Redins relies on city-run accessible transportation, and he told the CBC that he was not able to get tested and vaccinated as soon as he had hoped and is now recovering from Covid-19 (Williams, 2022). “It frustrates me because I feel like I’m being left out,” he added (Williams, 2022). Kevin expressed his frustrations with the province’s exclusion of the needs of labelled people, asking important questions: “What’s the government doing for us? What are they doing right now?” Younger DiStory partner Nick echoed John and Kevin: “It hurts my whole body; it hurts my heart.”
The world can be a better place if we make it a better place.
— Nick
Inequality is nothing new to the partners of the Project DiStory. As a group, we believe that storytelling is an important part of advocacy. The barriers we’ve discussed in this post have made our collaborative work even more challenging and we are grateful for the individuals who have helped us continue to work together. Nick said that storytelling is his specialty and that “The world can be a better place if we make it a better place. I bet everyone wants that. I bet you do too.”
Source: Williams, Nicole (2022). People with Disabilities ‘left out’ of Ontario’s pandemic response. Date accessed: January 24, 2022. Accessed at: https://www.cbc.ca/news/canada/ottawa/ontario-covid-19-disability-accessibility-1.6311083