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Online group, Canadians with Disabilities and Their Allies, share challenges they face

August 4, 2022   ·   1 Comments

By Constance Scrafield

It’s the internet, right? We are no longer confined by our geography. Open up a space on Twitter (for example) and everyone from everywhere can come together to tell their stories.

In January, disability advocate Brent (Weatherman) in Victoria BC opened a Twitter space to talk to fellow disabled people and their allies. There were two main motives for this: to encourage that connection; to begin an online movement defending and promoting people with disabilities, pushing government on all levels to change for better policies and aids for the disabled.

The Citizen joined the Canadians with Disabilities and their Allies for brief interviews with several individuals. These are snippets and their full stories will be posted on Twitter @Weatherman2709.

Founder, Brent made it clear at the outset, “Being disabled is like going through hell and back sometimes. As a child my room was my safe place.

“It is so important that anybody who wants to join us can come in.”

He remarked, “I wanted to say that disability does affect different people; no matter what, everybody can become disabled.”

The statistics back up Brent. Although 15 per cent of the world identifies as disabled, 22 per cent of Canadians, age 15 and over are considered disabled. Of that 22 per cent, four of 10 are severely or very severely disabled but disability is expensive, funding is complicated and inconsistently available; the wage gap between those who are disabled and those without disabilities is noticeable. 

Working aged adults with a disability made a median income of $39,000 after taxes, while those with mild disabilities made $34,300, and those with severe disabilities made $19,200, according to Statistics Canada.

Here are parts of some of the stories we heard.

Neil was born with cerebral palsy affecting mostly his legs. Now at age 54, he told us, “I’ve seen a lot of change [in the attitude] toward young disabled people, students.”

As a youngster, his parents kept him with other able-bodied children. It was at his exercise sessions to help him deal that he saw kids in wheelchairs. Once his parents moved him to a normal school, he told us the teachers were afraid to ask him questions in case he could not answer them but he always could.

“Physio is free until you’re 18,” he informed us. “Then you have to pay for it. What I do is massage and see a chiropractor. It’s expensive to stay healthy. And I am definitely trying to stay healthy.”

What he would emphatically say to disability funding is: “STOP THE CLAW BACKS!” The policy of clawing back funding or pensions at all makes it very difficult for people.

“How can a pension be clawed back?” he railed. “They are supposed to be our protectors. And those survivor pensions are just Pink Unicorns that are clawed back.”

B, whose disabled mother died,made the point that her entire life has been involved with disability. She is very well acquainted with the problems of funding and knows there are “a lot of misconceptions about disability rights.

“Mental health, physio are not easy to access with [her] a child on the spectrum,” she informed us, “To apply for assistance devices, there’s lots of paper work, hoops to jump. “For mobility devices you can wait a long time and the accessibility act is still has a long way to go.”

She sees the Twitter group as a welcoming community.

“Legacy” spoke to the group from the U.K. He had found the site while browsing Twitter and asked to join.

Brent has been clear: everyone is welcome; respect for others is essential.

Legacy wears a t-shirt that says, “It could be you.”

“What I’ve found,” he said, “is that the pandemic brought people to think about others.”

Evil Flightless Birdie’s disability is related to sleep. She is glad to assist Brent with running the Twitter space; she loves the sense of connection.

Dealing with her disability means “making time for thinking about what matters and keeping a balance.”

Chris is running for Mayor of Winnipeg and joins the space as an ally. Chris is very concerned about matters of gang violence against Indigenous youth and wants to stand to with and for them. 

Sonja has a number of issues from childhood, with diabetes in particular. After high school she saved money, applied for disability benefits to move out on her own in Nanaimo, B.C., working in a doctor’s office.

Now Sonja resides in Victoria, B.C. with Brent, saying, “It means a lot, hearing other peoples’ stories. I’m really happy living in affordable housing here.”

Homeless from 1997 to 2016, Dan told us in 1998, there was “not a single point of help.”

In 2016, he gave a speech at City Council (of Toronto) and found room in a shelter “in the crack house. I totally understand anyone not wanting to go back,” was his comment. In a complicated life, he came back working with the community in 2019 by “hassling the council, ‘Hire me!’” until they responded by making him responsible in the Toronto housing and neighbourhood improvement departments.

Coming to Canada from the U.K., Nicolas had a fall at the age of nine and a half years, from which he woke up six days later in a full body cast with only his spine clear of injury. At 23, he joined the British Army stationed still in Calgary but had a heart attack. By the time he was 51, he was living with his second wife, Valerie, a PSW. She became disabled. Five months ago, she applied for ODSP. In two years and seven months after applying, Nicolas said, Valerie will get a video interview. 

Said Nicolas, “We have to change our system, it’s killing people.”

Living in Manitoba, “It was the heartbeat of the nation decades ago,” Greg commented. He was diagnosed with Asperger’s at 35 years old, five years ago. A family member had suggested he be tested as a boy but there was no testing until he reached junior high school.

“If I had it to do over,” he commented, “I would have gone to Autism-friendly places and I could have put it on my college form.”

Alan is a [hobby] photographer on ODSP living in Toronto. His parents were professors and for a while the family lived on a boat, with which they travelled to the Bahamas and back over a year.

“We travelled to Europe in ’78, “we didn’t own a house,” he offered.

Growing up, Alan worked in a restaurant and an auto body shop, where he was interested in wielding but was diagnosed with mild cerebral palsy.

As an alternative, he turned to landscaping, buying his own business until the work and the hours wore him down.

In Orangeville, the Citizen spoke with Sara Clarke of Branching Out Support Services, now its executive director, which offers support to [mainly] the Neurodiverse although, as Sara said, “We would provide support to anyone.”

By support, she means trained support people who deal one-on-one with clients and are paid by the clients. Many of them only receive $5,000 a year to cover this service through their passport funding with the government, used to access their support people. 

“That doesn’t go very far,” she said. “There is a funding crisis.

“When we’re in the field we get a sense of what’s happening and quite a few of the staff are very frustrated – the system feels broken. We have many fantastic people do their best for connection.”

Another important issue for this disability, for funding model is a lot of people who have aging caregivers and a housing crisis worry what will happen when those caregivers can no longer do that.

Said Sara, “We look at our past history of people with disability, when eugenics was a real thing and we’re at risk of going back to that again.”

Brent (Weatherman) invites a wide assortment of politicians and interesting people to come as speakers on the site and they do come.

Find them on Twitter @Weatherman2709 to follow, tweet or direct message.

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