How to escape a fire with (or without) your wheelchair

I spoke with my colleague Sarah Trick about emergency preparedness, who it leaves out, and how climate change and the pandemic might shift the way Canadians see the world
By Matt Gurney - Published on Dec 20, 2021
Sarah Trick says that Canadians often think we are exempt from danger. The pandemic proves otherwise. (Courtesy of Sarah Trick)

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A few weeks ago at The Line, a commentary website I co-founded last year, I published a long column about Canadians and the world they live in. It's hard to snappily summarize a long essay, so I'd ask you to read it yourself, but if you're really slammed for time, the extremely short version of my thesis is this: most Canadians today have grown up in a time and place in history that is, by almost any standard, exceptionally peaceful and prosperous. "A typical Canadian, and many others across the West, born after 1945 or so," I wrote, "has lived in an era where their country was militarily secure, economically prosperous, politically stable, and nestled comfortably inside a confident, triumphant liberal-democratic international consensus. Along the way, we have experienced medical breakthroughs that have continuously both lengthened and improved our time on this earth."

I don't think this is a bad thing, of course. I've benefited from this as much as any, and more than most. But what worries me — why I wrote the column — is that I fear we have come to take for granted something that is remarkable and rare, and that the facts on the ground around us may be changing in ways we'll struggle to perceive, accept, and adapt to.

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“But here's the rub, folks: we are not owed any particular future, and are not guaranteed more of what we've already had,” I wrote. “None of what we've enjoyed is the natural state of human affairs."

I also noted that many Canadians have been left out of the winning streak, or at least haven't benefited equally from it — I confess I was thinking mostly of Indigenous people and racial minorities, though the list is obviously longer than that. My TVO.org colleague Sarah Trick, who is disabled, followed up on my column with a long thread on Twitter, and though I think we can fairly say that she agreed with my overall thesis, she added incredible insight. After reading her thread, I contacted my boss here at TVO.org and said, "Sarah's piece needs to be more widely shared. Should I interview her?" And as my boss is kind enough to usually do, he said yes.

So, I spoke with Trick about emergency preparedness, adjusting expectations, and what it's like to live as someone else's "worst-case scenario."

Matt Gurney: Before we jump into the big stuff, to the extent you're comfortable, tell the readers about your disability, since I think that's important context.

Sarah Trick: I have cerebral palsy, which affects my arms and legs. I use a wheelchair. I can't walk, at all, and I have limits to my range of motion. I require help with many basic tasks, like getting dressed or going to the bathroom.

Gurney: A big theme of my article was that Canadians are unprepared for disasters and crises because we just think those are things that happen someplace else. I've been writing about national defence and security my entire career, and one of the underlying assumptions of Canadian defence policy, at least for the broader public, is, "Why do we need a military? We have America." Something very similar to that line of thinking is also everywhere in our attitude toward emergency preparedness and disaster response. But geopolitically, the world is getting nastier. Climate change is expected to produce larger, more frequent natural disasters, including things we maybe haven't experienced here before. You are also interested in our disaster management plans, And said on Twitter that you realized at a young age that they didn't include people like you.

Trick: Yeah. I realized that when I was maybe four or five years old. My mom and dad and I went on a flight. I remember the flight attendant coming up to my mom, and saying, if there's a disaster, or anything like that, they basically told my parents just to leave me there, and somebody else would help me. And my mom went, "Yep, yep, sure, of course." Then the flight attendant left, and my mom said to me, "I was lying to her. If there's a problem, we're going to grab you and run. We're not doing what she told us."

Then I paid attention as I grew older. When I was in high school, there were fire drills. When I was in elementary school, I didn't notice it so much, because we were all on one floor, and we'd just be evacuated with everyone else. But when I was in high school, if my class was upstairs, me and the other kids in wheelchairs did not evacuate. We went to the math resource room or something, and we were supposed to wait there for fire personnel to come and get us. It was supposedly safe because the walls were reinforced. I sent you a story earlier about somebody else — their evacuation plan was to go and sit in a stairwell. There are actual reasons for this: what you want to do is take somebody to the most reinforced part of any building. But there wasn't an evacuation chair, there wasn't a drill that we could go through to know what it would be like to actually get evacuated, there wasn't anything that guaranteed that we would be evacuated at all.

I remember in university people would trigger fire alarms, whether they just burnt their popcorn in the microwave or were deliberately doing it to cause trouble. There were a lot of fire alarms. And it used to be that the attendants would come and check on us, the kids with disabilities, in our rooms. But then the fire marshal made them stop — they said that's really dangerous for the attendants, going into or staying in the building, so they shouldn't do that.

We said, you know, it's dangerous for us to be in our own rooms! But nobody cared about that. So it was clear to me that maybe there was a plan, but no one communicated it to us or practiced it, and it always just amounted to waiting in a room and hoping someone would come rescue us.

Gurney: You said before that you'd bring it up. You would ask questions, talk to the fire officials. When you or others spoke up about these issues, what was the response?

Trick: "Oh, don't worry. You're safe. We've planned for this, no one will forget you." And you know what? I was never worried I'd be forgotten. I was worried that I wouldn't get out of a burning building. I think people wanted to reassure me that people cared about me, but that wasn't what I was worried about. I wanted to be told the plan to get me out to safety. I wasn't asking for assurance that I was valued, I was asking if I'd survive. But usually what I got was an appeal to my emotions. I wasn't asking for that. Ever.

Gurney: I know you can't speak for the state of mind of the people you were talking to, but I'm curious — how did they respond to the question? Was there any awkwardness or embarrassment, were you asking about something they wish you hadn't brought up?

Trick: I've had this conversation several times in several ways. And I think it has changed as I've gotten older, with people being less focused on trying to be emotionally reassuring. I do think there was genuine care. But this is what the fire department tells people to do. They're following "the plan," but it isn't much of one. And maybe that is the best plan that anyone can come up with, it is usually what the fire code says to do. I'm not sure if there's any data there about whether people actually do get rescued. Sometimes people do get injured in evacuations, when people try to move them in ways that don't work for their bodies. So, I'm usually concerned about the practicalities of things.

I think there was discomfort there because people don't want to look at it, so they're like, oh, well, I'm sure the evacuation plan is fine. It also depends on the circumstances. If I went to the TVO office and I had to be evacuated, I might be the only person there in a wheelchair. That would probably make it easier to evacuate me. When I was at Carlton [University], there were 20 or 30 of us in residence, and we'd need to all be evacuated in a very short amount of time.

Gurney: This is a random question, but what would your wheelchair weigh?

Trick: About 165 kilograms. And then my weight, too. And my chair isn't particularly heavy compared to some other power chairs.

Gurney: It would be possible for a group to carry that, but not easy. And not far.

Trick: You wouldn't take the chair. You'd take me out of it. But that causes other problems. If my chair was damaged or destroyed, I would be literally unable to move, and that would start causing problems for my skin and other issues.

Gurney: You mentioned being removed from your chair. Just, hypothetically, if there's an emergency and they can't get your chair out, could someone safely remove you from it, or would they risk injuring you?

Trick: Yeah. It really depends on how it was done. Here's an example. An acquaintance of mine fell out of his chair. And people tried to help him up, but they did it the wrong way. They got him onto his knees. But he's never been on his knees before. And he fell again, and was badly injured by that second fall. For me, you could lift me out of my chair, but you'd have to listen to me and I'd tell you how to safely do it. But that depends on my not being incapacitated.

Gurney: I wanted to ask that because, when I was a child, very young, there was someone at our school in a wheelchair. It was a long, sad story. They fell out of their chair one day while outside and they were begging for help — on the ground in the cold. But the teachers had drilled into our heads that we were never, ever to move this person. Their physical condition required very special handling to avoid inflicting serious injuries, and only a few teachers had been taught what to do. They had a brace or a board or something, I don’t recall all the details. But I remember this day. All we could do was run to get help and we had to leave the student on the ground. It's not a good memory. I think in an emergency, you might actually have a bunch of people willing to step up and help. But if they don't know what they're doing, they could hurt someone.

Trick: They could. It has happened.

Gurney: We've talked about some different institutions here. Elementary school, high school, Carlton, airlines. Is anyone good at this? Has there ever been a person or institution with a solid plan?

Trick: Carlton was the closest. They had an attendant program and had a lot of people with disabilities who were constantly on campus, year-in, year-out. A few times there, I had to be rescued, not from a disaster, but from my chair's batteries dying. Eventually, people would come to help me and push me back to my residence across the whole campus. I'm not trying to say that the plans are all bad. At Carlton, for example, say there's a fire and they get 20 people in wheelchairs out of a burning building. That's good. But if they don't have their wheelchairs, that could also cause them great harm. If they don't have their medications, that could cause them great harm. And I don't think anyone has ever really understood that.

Gurney: We've been talking about all this in a fairly hypothetical way — a burning building is the example. In early 2020, of course, a disaster did strike Canada. I've read on Twitter and in your journalism how hard it was for you to arrange continuity for your supports, which, as you've said, you rely on for basic necessities.

Trick: It's actually worse now. It was bad then. It's worse now.

Gurney: Huh, wow. Go on.

Trick: I'll back up. So trying to arrange backup care in the early part of the pandemic was difficult. Because yeah, we didn't have access to testing. Everybody had to quarantine after a sniffle. There were no vaccines. We have tests and vaccines now, and that makes a big difference. But now, what has happened is that the personal support worker workforce, people that would do this sort of care for people who do live at home, is being aggressively recruited to go into long-term care and hospitals. This is good! We need more people there. But those of us who live at home also still need help. So, it's very difficult to find that help. If you are a PSW, why would you do a two-hour shift at someone's house if you could do full-time hours in long-term care? It doesn't make economic sense. There is aggressive recruiting for more PSW students and getting them placements, which is great, but those placements aren't going to go to the home-care workforce.

Also, think of quarantine. Let's say one of my care attendants gets exposed to COVID and they test positive. I also now have to get tested. I have no safe way to access a test. There were some options to get tested at home but I don't know if they do that anymore. Especially in the winter there is no way for me to go get a test. Disability transit won't take you, except by cab, and that isn't safe.

Let's assume I finally get a test and I test positive. All my workers have to be quarantined. I don't think anyone has gotten that there aren't backups at some agency that I can call — I hire all my own staff. If they all have to isolate, I have no care. Early in the pandemic, I read an article about this. Someone in that situation might have to go into the hospital: that drives up our hospitalization numbers; that takes staff and resources away from other patients. And they might get sicker from being in the hospital. I don't think anyone has a solution for that.

I've heard that someone was able to get agency workers to come in after about three days: I can't go three days without help. Whenever people say, hey, if you're vaccinated, you'll only have mild symptoms — it's not the symptoms I worry about. It's losing access to care and my life being in danger. I need people to come in three or four times a day — if they don't, I don't eat. I don't go to the bathroom or get dressed or move. There's been a couple of times where I've been worried about possibly getting COVID and I've texted people in a panic to tell them: I don't care what happens to me, but can you just please make sure that my cat doesn't starve to death? And my friends tell me, of course we won't let your cat starve, you crazy person. But this is an actual concern I've had.

Gurney: When you responded to my column on Twitter, you said something that made me laugh, despite the serious nature of the topic. You said that you had a lot of questions growing up about what the plan was in case of an emergency. You also said that, shortly after 9/11, you had geopolitical questions for some of your teachers, about how Canada could defend itself. Your teachers found this baffling. You said that you think you had a reputation as a “catastrophizer,” which made me laugh, because despite all the differences in our backgrounds, that's one thing we have in common. I've always been the guy asking questions about the plan for emergencies and becoming worried when none exists. That's why I've spent so much time writing about this stuff over the years. But you said something on Twitter, and gosh, it was perfect. I'm totally going to steal this, so I want to give you credit now, on the record. You said that if it's the nature of Americans to think they're exceptional, it's the nature of Canadians to think they're exempt. And I've been thinking about this stuff for years, and just wrote thousands of words about it, but you found a way to say it that was much more elegant. It was perfect. You said that you are someone that doesn't have the luxury of sharing in that feeling of exemption, and that you are already someone's worst-case scenario. What should Canadians take from your warning that they are not exempt?

Trick: The worst thing can happen to you. I've noticed this quite a lot as people get vaccinated. As they go out into the world more I hear people say, oh, you know, there are still some risks of getting long-COVID, or maybe still getting some severe symptoms. Or, oh, there's a risk of flooding, but I'm not going to worry about it. It seems like there's an attitude that rare things must mean that they're not going to come to me, rare things go to someone else. And they are rare; they're not going to go to everybody. They're not going to happen to everybody. But it could be you. You could get long-COVID. You could still get severe symptoms. I'm not saying that you shouldn't take some risks, but I feel like there's an attitude that risks do not apply to you. They do.

Gurney: I think that’s something a lot of people have struggled with during the pandemic. If you tell someone they have a one-in-one-hundred chance of dying, even if they accept that on an intellectual level, they'd still be shocked to find themselves dying. They would expect to be the 99 out of 100 that doesn't. I don't think people are good at understanding that kind of risk. We keep talking in hypothetical terms about a burning building. If you were in a burning building, you'd get the hell out of it, if you could. But when the risk is much smaller, people don't worry. And I'm with you. That's okay, people have to accept some risk. Everyone does every day. But I think we tell ourselves that a small risk doesn't exist. And as you say, it does. You're not exempt. But it's hard for people to be rational like that. People struggle.

Trick: Yeah. Everyone does. I remember I had a freak accident once. I was in a wheelchair cab. We went over a speedbump; the guy was going too fast. I bounced up in my wheelchair, bounced back down and fractured my spine. It's a fragility issue, my bones aren't as dense as they should be. And so that was a nightmare to heal from. I never quite fully recovered from literally going over a speed bump. It was just a rotten piece of luck. And then after that happened, as I started getting a little bit better, I noticed that I was terrified of taxis. I didn't want to go in them. I didn't want to go anywhere near them. The one smart thing I did, going out of the hospital, is I made sure that I rode the bus again, like that exact day. I knew: I cannot be afraid of the bus. I need to have some way of getting around. So, I did that. And I think that was smart. But then, I didn't want to go in a cab.

So next time I saw my doctor I said: should I treat this as anxiety and maybe get some cognitive behavioural therapy? Work on getting into cabs and try to make sure that my fear goes away? Or should I treat this as a perfectly rational fear and stay away from cabs? And I never really got an answer. The answer that I got was, "Your biggest risk factor for having these fractures is having had one of these fractures, so it could definitely happen again." So what I took from that was, It's up to you.

Really useful!

I understand rationally that the accident was bad luck. But I also understand rationally that my spine hasn't gotten better since. So, I don't go in cabs anymore, really. I don't know if this is a fear-based response to trauma or if I'm being very rational. This has been coming up again ever since the vaccines started to come into play, because I have no reason to believe that the vaccine didn't work for me. I have friends who are genuinely immunocompromised, they're in different situations.

Everyone's risk tolerance is going to be different. But when you have a risk tolerance, I think people still need to know that. They could be the one that draws the bad hand this time. I think there has just been an attitude that it's always going to be somebody else that draws the bad hand, probably a disabled person or an immunocompromised person. What I'd like people to know is, you are one viral infection away from being one of these people, or one climate disaster, or just one anything. I think people don't get that, and that's going to make the next few years pretty hard.

Gurney: You mentioned a disabled person, and that obviously applies. You had sent me a bunch of links to horrible news stories from all over, documenting disabled or vulnerable people, sometimes seniors, dying during disasters because they were abandoned. But it also occurred to me that it would apply to "people in Africa" or "people in Asia." I don't mean that in a racial sense, per se, but no doubt there's some of that. I mean it more in the sense that Canadians have a sense of there being places in the world where bad things don't happen, and it's shocking when it does, and also places where terrible things routinely happen, and it barely makes the news. We've had a few signals that that might be changing — that we might be facing more danger and risk right here at home. What worries me is that our sense of safety is very ingrained now, and it might take a long time and a lot of hard knocks before we start to realize, as you said, that we are no longer exempt.

Trick: Yes. And it's difficult now, because nobody knows to what extent any of these changes are going to be permanent. Some of them may be, or maybe none of them will be. But we don't know yet. I hear people say, a lot, when will this be over? When will we go back to our old lives? And I'm thinking, you know what? Maybe never. Maybe we don't get those old lives back. I had a life once where I didn't think much about getting into a cab. Now I don't. Maybe I'll be able to go in one again, some day. But it will never be something that I do without thinking or without being scared. I didn't do anything to become this way. It happened to me. It can happen to you.

But one thing I want to add is that a change in circumstance doesn't mean the end of hope. And I think that's what's missing. I think this is a common thread between all these things. People don't think about becoming disabled, or losing things, because it scares them. And it should, because that is a catastrophic change in the way that you see yourself and in the way that people react to you. But I think people are so scared of losing anything, that they just put all that fear onto somebody else. They embrace the just-world fallacy and believe that since they are good people, bad things won't happen to them. And then they're totally unprepared for loss when it happens.

But there is life after loss. Like I said in my thread, I am already some people's worst-case scenario. I'm the kid that people say, you know, they couldn't parent someone like me. I'm the child that people pray that they don't get, and my life is pretty good. I have a job, I've got friends, I've got a life. And even in this pandemic, I've managed to find a sense of purpose and joy. So, whatever we lose, there's always something after that until you lose your life. So, make sure that you know that there's something beyond whatever loss it is you're grieving.

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