Shay Erlich talks to Dustin Galer about Disability Activist Beryl Potter

The cover of the biography of Beryl Potter, titled Beryl: The Making of a Disability Activist. There is a drawing of Potter in her wheelchair and surrounded by hands holding microphones.

Dustin Galer is a Hamilton-based historian who recently completed his second book on disability rights activism in Canada. Published by Between the Lines, Beryl: The Making of a Disability Activist is a revelatory account of Beryl Potter’s decades on the front lines fighting for accessibility, rights, and recognition. Akimbo’s Shay Erlich spoke to Galer about what was accomplished then and what still needs to be done.

Could you give us an overview of Beryl and who she was within Canada’s Disability Rights Movement?

Beryl Potter was born in Liverpool in the 1920s and immigrated to Toronto in the 1950s. Her life took a dramatic turn when a series of events led to the amputation of multiple limbs and partial vision. She went on to become one of the most recognizable disability activists in Canada. From the 1970s to the 1990s, she would regularly flash across newsprint and television headlines. Whether she was shutting down Yonge Street for a protest during rush hour or marching on Parliament Hill, she was often in the news. That’s why the book’s cover is of her being surrounded by microphones. That’s how Canadians knew her. She was the go-to person on disability issues.

When she wasn’t protesting or lobbying, she was in classrooms, speaking to and educating children. She probably spoke to tens of thousands of children over the course of her career. I was one of those children. She visited my school when I was five. Beryl always said that children are our future doctors and architects and policy makers. She felt that by imprinting positive views of disability on children, they would carry that into their adult lives, and that’s how you make change.

What are some of Beryl’s accomplishments that you think that Canadians might be surprised by?

In the late 1980s the federal government introduced the Employment Equity Act. Like most legislation, especially as it relates to people with disabilities, it was well-intentioned but ultimately weak. There was no enforcement. Beryl and the Coalition on Employment Equity for Persons with Disabilities wanted their concerns known to the Prime Minister, but they couldn’t secure a meeting with him. They got a tip that he used a specific hallway between the House of Commons and the Cabinet Room, so they intercepted him there. They thought they would just try to get a meeting with him, but all of a sudden Beryl reaches up, grabs him, and says, “You haven’t been listening to the disability rights movement. We’ve been trying to make our demands known to you and you’re not doing anything about it.” She just wouldn’t let go. Even Judy Rebick, who’s legendary for her militancy, said, “Beryl, you’d better let go of the Prime Minister. We don’t want to get in trouble.” Eventually they did get a meeting with his top policy person and they put their demands forward. Those demands weren’t met, so they got together 150 people and marched on Parliament Hill.

She led another major protest against the TTC that drew a lot of attention to the problems with paratransit. The demonstration deliberately took place during rush hour and went from City Hall all the way up to Davisville along Yonge Street. She completely shut down the street. When people questioned her, she said, “The sidewalks aren’t fully accessible, so we can’t use the sidewalks. We have to use the centre of the street.” There was this amazing procession of wheelchair users, documented because she was followed by documentary news cameras; people using wheelchairs rolling up Yonge Street, horns honking in the background. All of this to attract as much attention to the cause as possible and pressure policy makers to consider the needs of people with disabilities and Wheel Trans users.

Creative processes were also a significant part of Beryl’s life and activism. For example, she made the vast majority of her clothing herself and ran a television program with an all-disabled crew. That’s a significant accomplishment even in film today.

The program was called Ability Forum. In Canada, the CRTC carved out a certain amount of television programming that had to be community accessed. That gave underfunded social movements the opportunity to broadcast their message to a wider audience. Beryl decided she needed to reach a wider audience and got a program, and she managed to negotiate an all-disabled crew as well. So, she gave jobs to dozens of people both in front of and behind the camera.

As for her clothing, before her accident she was literally the perfect 1950s housewife or at least she aspired to be. A lot of that involved sewing and knitting, so she had those skills. After her accident, when she was left with only one eye and one arm, she learned how to knit and sew again so she could make attractive clothing that fit her body. She modified her sewing machine so she could use the stump of her arm. She adapted to life in the best way possible, by being a creative person. She would make toys for her grandchildren and inspire their creativity. She also modified all gadgets to be able to cook meals because that was important to her. No occupational therapist came in and told her all this stuff. She figured out what worked for her, and that process of adaptation was obviously interlaced with the creative side of her personality.

Disabled people often talk about how disability creates innovation because we don’t use things the way other people do. The tasks we’re trying to accomplish require very different approaches. It’s cool to see earlier historical evidence of the types of innovations that to some degree, disabled people still use today. I sew as well, and I can’t tell you how many disabled sewing folks who I talk to are like, “Just move where the pedal on the sewing machine is so you can hit it with your elbow or whatever you can, depending on what you need for your body.”

The last few questions I have are about how our understanding of Beryl’s life is influenced by what’s going on in the disability world of 2023. Something that struck me really intensely about Beryl’s story is that it sounds like Beryl was working a lot, frequently eighty hours a week or more. It doesn’t seem like she was appropriately or ever or rarely compensated for any of that work. How can her story help us understand the overlapping social factors of poverty disability and the devaluing of disabled people’s labour?

In Beryl’s case, she was technically an injured worker because she sustained her accident at work. She slipped on a piece of cellophane, probably a candy wrapper, and hit her knee. Every amputation, every illness was all traced back to that. So, she is unique in that as an injured worker, the Workers Compensation Board, which is now the WSIB, paid for a whole lot of things like a track on her ceiling that went from her bedroom to her bathroom and all sorts of assistive devices, power chairs, services, and rehabilitation. Her ability to access that puts her in a certain silo, and the thing about Canadian policy is that it’s all in silos. If someone was in a car accident and sustained the identical injury, it would be in another silo. Does that answer your question?

It answers the question of how she survived day-to-day, but it doesn’t really answer the question of how in today’s society, we would still understand the work that she put into all of her activities as labour that ought to be compensated and probably would have been compensated had she not been disabled.

She had to get creative with how to generate income. For her organization Action Awareness, she was going out and applying for project grants. A lot of her activities were funded by the Ontario government. At that time, the government was a bit more activist. They were liberally providing funding to disability organizations. Her personal life was very much interlaced with her activism because they also lived in a rent-controlled co-op building. She was elderly, she used assistive devices. Her son had an intellectual disability. She couldn’t get any closer to the subject of her activism. Having that grounding gave her the energy to do what she was able to do. You had to have endless sources of a fuel and, if you live those experiences every day, you’re going to have more than enough fuel. Turning it off is the problem.

What do you think that she would think about the state of disability in Canada in 2023? What gains would she be proud of and what would she be fighting for today?

I think she would be furious if she was here today. I mean, okay, so to roll back, there’s this fabulous moment 35 years ago. I think it was 1988. She appeared on City Line, this popular call-in talk show, and talked about lack of accessibility, transit, affordable housing, poverty, unemployment, discrimination… Do any of these things sound familiar? The things that they were talking about then are just as relevant today. So I do think that she, like other contemporary activists of her time, would be just so frustrated with the slow pace of change.

There’s new legislation coming out now. The Canada Disability Benefit. I’m not going to speak to that directly because I’m just the historian, but one thing we should be doing more, especially when new policy comes out, is listen to people with disabilities and disability organizations. David Lepofsky and the AODA Alliance have said that it’s well-intentioned, but ultimately weak. That’s a theme, I can tell you as a historian, I have seen in disability policy for the last eighty years. It’s well-intentioned, but weak. That is exactly how you could sum up so many different initiatives. And so, I think Beryl would recognize, unfortunately, where we’re at today. We’re certainly nowhere near universal accessibility as it’s supposed to be Ontario in 2025. I think there’s a new target set federally…

Yes, the Accessible Canada Act with the 2040 implementation timeline. Because we should all wait another 27 years for access to federal services.

Yeah, just keep kicking it down the road. That’s what she would see. She would see a lot of familiar cultural and physical spaces in which people with disabilities are treated similarly as to her day. I think she’d be disappointed, but then very quickly get angry and start knocking on someone’s door.

It really was profound for me to see that all of these issues were known since day one of the implementation of these policies, and that still, as disabled folks in Canada and at this moment in time, it was certainly not for a lack of identifying the issues, but they are still present.

The story that sums it up for me is the time she was awarded the Order of Canada, our country’s highest civilian honour, in the late eighties. Stompin’ Tom Connors actually tells this story because he was awarded the Order of Canada at the same time. There is an award ceremony in Toronto before they do the investiture ceremony in Ottawa. And he tells of these very straight-laced people wearing tuxedos and champagne flutes. Not his vibe, if you know him. He’s got the cowboy hat and cowboy boots. So he swaggers up to Beryl and says, “You give any rides on that thing?” And she says, “Sure. Sit down.” He thought maybe she’d go a few feet, but she kicks it into high gear. He’s got his cowboy hat and he’s like, “Hi ho Silver!” They’re doing laps around these people who are bewildered and wondering what is going on. That broke the ice and everyone had a party, and it was a really great moment from that night. That’s where his story ends.

But I researched the story and it continued next door. At the time there weren’t many restaurants in the King Street area. Ed Mirvish had bought the building next door and set up a steakhouse. Everyone’s filing out of the theatre to go next door and Beryl notices there’s two flights of stairs to get in. She waits on the sidewalk for someone to show her in the back. She hated to be brought in through the back, but she’ll do that anyway. As time ticks by, she realizes no one is coming to get her. How is she supposed to get in and celebrate with everyone else? Eventually someone realizes what’s happened and they say they’ll carry her up two flights of stairs. She says, “I am not doing that.” She’s in her seventies by this point. She has a lot of physical issues, so that’s not going to happen. She calls her son to get the car and, as she’s being loaded in, a limousine pulls up behind them. Out steps Governor-General Romeo LeBlanc and he asks why she’s leaving so early. She tells him, “Next time you organize an event like this, that celebrates someone like me, give a thought to accessibility.” For me, the whole arc of that story, just at the end of her life, celebrating her lifetime of achievement, and no one thought about accessibility. No one thought how to accommodate her. What a poignant reminder of the work that needed to be done beyond her lifetime.

Still to this day. It was the Tony Awards two years ago when we had the first wheelchair-using actress to win and she couldn’t even give the acceptance speech from the stage. We’ve got a long way to go, and it’s endemic throughout arts and professional recognition events.

Do you have anything that you were hoping to share that we didn’t have the chance to talk about?

I usually say what I hope people take away from the book. There are three main points. Essentially I wrote the book because I felt that we need to know more disability activists and how they’ve shaped our history. I could be wrong, but my feeling is that for most Canadians their name recognition begins and ends with Terry Fox or Rick Hansen or maybe Michael J. Fox. Nothing against what those men have done, but we need to know how activists have literally shaped our physical and social culture. Why don’t we know Jim Derkson and Sandra Carpenter and David Lepofsky? Why don’t we know these stories? Beryl’s is just one of many stories where people are forced to advocate for themselves. I hope that I can contribute to more of an appetite for more stories like that, because I really do think we need to have more full rounded stories of people’s lives and what they’ve done to support this country’s change towards accessibility inclusion.

The other thing was I agree that children should be exposed to positive representations of disability at a young age. Beryl was right that it does nurture empathy instead of fear. I don’t know if they still do this in schools or what the current protocols are like, but if it’s not being done, I think that sensitizing children to disability does impact the way you process disability as you grow up. I mean, she spent thousands of hours criss-crossing the map. She had a van made to look exactly like Terry Fox’s van, the same model, the same make, because she knew people knew that van. She’s like, “I’m gonna capitalize on that for this disability initiative.” She always felt that imprinting positively on children, they would carry that into their adult lives and that’s how you make change: you change young minds, you change the future.

The last point I like to leave people with is that I hope by reading the book they come to realize that we do live in a very death and disability avoidant culture. But by avoiding these topics we’ve created systems that are riddled with gaps and problems. Beryl literally spent the last half of her life trying to attract people’s attention to these issues. She knew that people don’t think about disability until it affects them directly. She experienced that as an able-bodied woman up to age forty, so she knew that these problems would persist until people really come to understand what that experience is like, and change starts by paying attention.