Note: Transcripts may contain errors. If you wish to re-use all, or part of, a transcript, please contact CBC for permission. Please check the corresponding audio before quoting in print. Copyright © CBC 2020

The WCBA Transcript for June 06, 07, 2020

Host: Dr. Brian Goldman

[Sound: A pulsing heartbeat, and an instrumental]

DR. BRIAN GOLDMAN: I’m Dr. Brian Goldman. Welcome to White Coat, Black Art. The show about medicine from all sides of the gurney. As we’ve seen, COVID-19 packs the biggest wallop on Canada’s most vulnerable people. In the past few weeks, we’ve told stories of seniors, people with mental health challenges and those who live in shelters and other kinds of precarious housing. One in five Canadians lives with a disability. And they too are vulnerable to the coronavirus. After months of waiting, the federal government finally announced a support package on Friday afternoon. People with disabilities will receive a one-time payment of up to $600 — to help defray the costs of living during the pandemic.

BG: All of their stories were recorded before Friday’s announcement. It’s worth noting that this is National AccessAbility Week in Canada. Because we’ll find out what it’s like to try to protect yourself from the coronavirus when you can’t read lips because people are wearing masks, and when you can’t tell if others are staying at least two meters away from you… and more. And later in the show, we’ll meet Al Etmanski, a disability advocate, father of a woman with Down syndrome and co-chair of an advisory council to the federal minister responsible for people with disabilities. But first, a story from Montreal, where the coronavirus has hit hard...

[Music fades]

[sc]

FR: I've been cooped up in my apartment since March 12th. I think I’ve been out of my place maybe three times. And I'm not somebody that usually stays in my home as much. There comes a time where we have to, you know, start opening up just for our own mental stability [chuckling].

BG: So maybe an opportunity to slowly get back to the kind of life you had before. And I want you to tell me a little bit about what that day-to-day life was like before the pandemic?

FR: I live on my own. I have what we call a home care through a programme, which allows me to hire my own attendants. So in the morning, they come and help me to get me out of bed and help me with, you know, bathing and dressing and my meals. You know, they also help me with my apartment, cleaning and stuff. If I have appointments, if I have to go to my groceries, or if I have medical appointments, social activities. And then they come also at nighttime to put me to bed. They come every day to help me. These are the people that I rely on. A lot of these people that come and help us, unfortunately, here in Montreal, the salaries vary between $13 and $16. So the salaries are still very low in comparison with an assistant that works, let's say, in a hospital or in a long-term facility, where they get paid like between $21 and now $26 an hour.

BG: So you laid out in some detail the attendants who would come in to see you before the pandemic. How has that changed with the pandemic?

FR: For one, they were afraid to pass on the virus. There’s a big responsibility that comes with helping people like us at home. And so a lot of us lost their attendants because of that. Now, finding somebody else is very difficult in the normal everyday times. But when we have a pandemic, it's even more difficult to find people.

BG: Nurses and attendant workers often go between a number of different clients’ homes.

FR: Yes.

BG: How do they protect themselves against COVID-19, and giving it to you?

FR: At the beginning, you know, there was also a lack of protective equipment. And so that was also something that was stressful for them, and for us. And, at the beginning, I remember they wouldn't really have anything to protect themselves. So they would use a scarf or just a piece of cloth, you know? But, I also know for the fact that these nurses, they go from homes to homes, or from long-term care facilities and they come to my house. And I had said to them, please, like don’t come to my house anymore. I'll just ask a friend if she can, like, give me my injection. So for at least five weeks, this is how I managed to stay safe. I was too afraid to get the virus. Now they have more equipment. And also now, they have it that the nurse that comes to my house is always the same one. I feel safer, you know?

BG: Were you responsible for providing masks to the people who came into your home?

FR: Yeah, that's another thing that I had to fight for. Like, when I say I'm an activist, I'm a type of person that is kind of one of these persons that is a go-getter, fighter. Because at the beginning, I wanted masks. I wanted masks for myself. I wanted masks for my employees. And I couldn't understand why the nurses that were coming to my house didn't have masks. So I wrote to my government. I wrote to the minister of health. Unfortunately, for a good while, we didn't have any equipment and then, maybe beginning of April, I received from the folks where the nurses are sent to me a little bag with ten masks. So I got ten masks.

BG: That's not going to go very far.

FR: No, exactly.

BG: You know, thinking about your health and accessibility, how is COVID affecting all of that and your general health?

FR: Ah, I think it's definitely more stressful on us because, again, I'm somebody that if I catch this virus, I don't know what's going to happen to me. Like, yeah, maybe I'll be okay. And maybe I'll have a slight fever. Or maybe I'll really have a very difficult time, and then I'll have to go in ICU. And right now, it's like kind of the Russian Roulette, you know?

BG: France, what do you want people to understand about what it's like to navigate this pandemic as someone with a disability, both from your standpoint and your activism, the people you represent when you're an activist?

FR: I was actually quite disappointed with my government here in Quebec because people with disabilities were kind of put aside throughout the whole pandemic. So a lot of us are feeling quite left out [slight chuckle] of the whole pandemic crisis.

BG: Well, France, I'm thinking about the fact that you're at home, and I'm glad it's a little cooler now that the heat is, you know, some of the edge has been taken off the heat, and that you're comfortable where you're living right now. And I want to thank you so much for speaking with us.

[Music: A bright, poppy synth beat fades up]

FR: Well, thank you for having me again.

BG: Bye-bye now.

FR: Take care. Bye-bye.

[music intensifies in volume]

[/sc]

BG: France has mobility issues and needs attendants who have adequate PPE. Our next guest has a different kind of disability and is facing a different set of challenges — many of them unmet during COVID-19.

Elizabeth Mohler

[Music continues]

[sc]

BG: Hi, Elizabeth. It's Brian. How are you?

ELIZABETH MOHLER: I'm great. How are you? I'm really happy we're here today! This is fantastic!

BG: Yeah. You know what? Me too.

[Music continues, but the sound clip fades out]

[/sc]

BG: Elizabeth has had a visual disability since birth. She also has two older brothers with autism spectrum disorder who live in residential care homes outside the city.

[sc]

EM: Hi, my name is Elizabeth Mohler. I'm happy to be here today on White Coat, Black Art. I am a 35-year-old woman who lives with a visual disability, and I am pursuing my doctorate at Western University in the field of occupational science, looking at how adults with physical disabilities access community attended services, and how that facilitates community engagement.

[Music continues]

[/sc]

BG: When she spoke with me via Zoom from her home in Toronto, Elizabeth said the challenge is navigating the system. Begin the moment she needs access.

[sc]

EM: When you go into our hospitals, or you go into a doctor's office, you're often presented with a print questionnaire to fill out. Or you're presented with print forms that you need to consent to. And if you can just imagine for a moment, as somebody who can't read those, how frightening that must be. So either you need to bring someone with you. So there's a trust piece, right? Now I'm bringing someone with me. I'm giving out personal private health information to that individual to fill out that form. Perhaps I don't have somebody that’s able to come with me making the appointments during the day, when friends and family and loved ones are working. Or I'm faced with having to ask for help from the hospital staff or waiting for the doctor's office staff, who are often very busy and overworked. That’s certainly another big fear, even Pre-COVID, that if I was going to the hospital for a procedure, I would worry about things like, is someone going to orient me to the room I'm going to be in so I understand where the washroom is, the call button, or am I just going to be left?

BG: So that was before the coronavirus. How has COVID-19 made it even harder for people who have visual impairments to gain access to health care in hospitals and elsewhere?

EM: The biggest is that right now, you can't bring anyone in with you to a hospital. So if I go to the hospital, somebody with vision loss, how am I going to fill out any paperwork? How am I going to get around if I need assistance? I think for those who have difficulty communicating concerns around how will they be understood by medical professionals? I think those are some of the really key ways that COVID has made different is that we're not able to bring people in with us for safety reasons.

BG: Public health and government authorities have been bombarding the public with all kinds of messages to wash hands, to practise distancing. How well do those messages get through to people who are visually impaired?

EM: I think the challenge with those messages is that a lot of them are visual. There are memes that are up on the Internet telling you to wash your hands, and showing you the 20 second rule about how to wash your hands. There are also a lot of graphs and there's a lot of data being presented around COVID. Also, the daily briefings that are happening often have print text that accompanies what the person is saying, and that's not always accessible unless there is audio description available.

BG: So tell me more about the public announcements, the posters in public places and signs in stores. How do you get that information?

EM: It's really difficult when you can't see. For me personally, I'm reliant on a couple of things. One is, of course, family and friends. But since we're social distancing, you're not often out with other people unless they're in your household. I can use an application on my phone called Aira that connects me as a blind person to a trained agent on the other end who gives me information about my environment and who tells me exactly what's in front of me on the street, whether there was a sign or what that sign says, whether there's a poster. The challenge, of course, is that Aira is a paid service. So as a blind person, I'm paying to be able to access my environment.

BG: How much does that cost, the service you were talking about?

EM: Yeah, the Aira application costs me about $99 a month.

BG Wow, that's a lot of money!

EM: Not cheap. Yeah, not cheap.

BG: So, you know, we've talked about the messages that you should be receiving, that you wish you were receiving. Is anyone doing things right?

EM: That's a really good question. I am aware of a gentleman who is actually taking graphs that are depicting numbers around COVID, and putting that into a sonar context. So it's a graph that's depicted by sound. And that's been really interesting to actually get a sense auditorily of what's happening around COVID.

BG: in terms of communication, what should agencies be doing to improve things that they aren't doing right now?

EM: Being able to communicate clearly and concisely in plain language, what's happening without a lot of medical jargon or large words, remembering that your audience is diverse. And also, I would say multiple formats. So not everybody has a computer with Internet access. So is there a number that people can phone if they're accessing by telephone? Putting things out on email service, on websites, social media, even in print, for those, again, that don't have Internet. So really, I think tapping into multiple forms of media.

BG: What concerns do you have about your health and safety when you venture out in public to shop or even to go for a walk right now?

EM: Well, one of my biggest concerns is, are other people's social distancing? I'm doing my best to when I hear someone, just announce that I'm there and step aside. But I rely on other people to make sure that they're doing their part to stay six feet apart. And some people are great and some people are not. What I would really encourage anybody to do is if they see somebody with a cane to say, I'm on your left, I'm passing, or go ahead. I'll stay here. You can pass. Letting people know verbally where you are is so important. And please, unless it's an extreme situation and somebody is in danger, please don't take our arm or try to steer us or grab us. We are supposed to be maintaining that six feet. So using verbal cues to say where you are is so important. I've seen some people doing it, but I can't stress it enough. I think the other big concern for me is around the masks. I understand their health and safety implications. But as someone that's blind, that relies on my hearing, the mask actually not only obstructs my hearing, but I’ve had difficulty when I'm trying to speak to somebody who's wearing a mask understanding what they're saying. So again, I fear for my safety when I'm out. Am I going to be able to hear all of the things in my environment that I require as cues?

BG: I can understand that the muffled voice would be a greater concern to you. But I can imagine other people might be thinking that you'd be reassured to know that somebody is wearing a mask because it means that they're more concerned or more attuned to some of the precautions that have been advised by public health officials to reduce the spread of COVID-19.

EM: Yeah, absolutely. I think it's none of these issues are simple. It's a complex issue. Absolutely, we want to adhere to, you know, what the precautions around COVID are are being asked of us. But I also I think the flip side is, you know, again, if you think about someone who's hard of hearing that lip-reads, how they do that when both parties are wearing a mask? So none of these things are simple. And I don't think there's any easy answers.

BG: You advocate for others with disabilities. What concerns do they have about getting health care during the pandemic?

EM: Testing. So mobile testing. Can testing be brought to the home if somebody suspects they have COVID? And what would that look like, so that they don't have to go to a testing site? Using the transit systems, whether that be paratransit or public transit. Have other people been on with COVID? Are the drivers taking all the precautions necessary? A huge concern I'm hearing is around this #notjustavisitor. Most of the friends and family are such a critical part of the health care team, whether that's helping somebody to communicate, whether it's helping somebody with eating, bathing, dressing. For a lot of my friends in the community who use attendant services, those attendants are critical to doing those activities of daily living. The concern is, am I actually going to be able to have any kind of dignity in the hospital if I can't get the help I need to do those basic things?

BG: Well, that's a lot of issues that you've described for yourself and for others with disabilities. And I want to thank you for sharing them with us.

EM: Thank you.

[/sc]

[Music: The bright synth begins to fade up again]

Al Etmanski

BG: You're listening to White Coat, Black Art. This week, the challenges people with disabilities face getting health care during the pandemic. As we’ve already heard, many of those health challenges are made worse by a chronic lack of financial support that’s only gotten worse during COVID-19. One person who knows all about that is Al Etmanski. He’s an author, community organizer and social entrepreneur. He’s been acquainted with disability issues since his daughter Liz was born with Down syndrome in 1978.

[sc]

BG: Al, it’s Brian Goldman here. How are you today?

[Music continues, but clip fades out]

BG: Al is co-chair of an advisory council to the federal Minister of Employment, Workforce Development and Disability Inclusion Carla Qualtrough. We reached Al via Skype from his home in BC.

[sc]

BG: What are the concerns that people with disabilities have been expressing about access to care, about, you know, whether it's in the home or in health care settings?

AE: The fundamental worry is how well people can maintain their health where they live? And that is both an economic issue. It's a staffing issue, and it's an access to supplies issue, Bryan. And it's very tough with the extraordinary costs associated with this pandemic. Accessing PPEs are not easy. They're in short supply. You end up having to pay a whole lot more accessing sterile catheters and the like when they're in short supplies. Our issues having to supplement the wages of your attendants is an issue. Extra diets and where to source that food is an issue. And then just plain shopping and hiring other people if necessary to do that for you. So a lot of people are in effect, private employers in that they make special arrangements for retaining their attendants. And there have been wage subsidies available to support large organizations, top up the wages of their staff, but that has not drifted down or penetrated to these individuals. And so there's an issue of how do you top up the wages of your staff to ensure that they don't take a job that's higher-paying elsewhere? That by itself brings up the whole issue of other essential supports for people with disabilities that are normally categorized as unpaid. But, you know, and related to family or friends and others. So recognition of those individuals as an essential part of the care team has been a really key issue for the disability community across the country. And it hasn't been satisfactorily resolved.

BG: And that recognition could go in many different directions, financial. Also allowing that person, that very important, essential family care provider to accompany their loved one in the hospital, for instance.

EA: Absolutely.

AE: These are issues that have become very acute during COVID-19, haven't they?

EA: Yes, they have. I'm fortunate to live in a province, the province of British Columbia, where our health authorities have made a determination that families, intimate caregivers are an essential part of the care team and should accompany an individual if they wish that into the hospital to assist with language, assist with understanding. We've heard here in British Columbia of examples where somebody who goes into the hospital alone is asked whether they are prepared to sign a do not resuscitate order and whether they've signed their MAID agreement when they went in there for a straightforward medical condition. So there's a general worry about the way in which people with disabilities are seen by some hospital officials that could limit the full benefit of medical supports that they need.

BG: I want to turn to the issue of what remedies are out there for them to deal with the added financial burden?

EA: Not many. This is not a new issue. I think that the pandemic, you know, augments the reality that too many Canadians with disabilities live in poverty. And the response so far has been minimal. There's been some support from the federal government for students with disabilities. And again, here in British Columbia, our province provided an income supplement of 300 dollars a month beginning in March.

BG: What would you like to see the government do?

EA: There is a call from across the country, from all of the networks, as well as from the parliament of Canada, to provide financial support to people with disabilities as a result of the extraordinary costs associated with COVID.

BG: What do you think it's going to take to address those disparities and make the issues faced by people with disabilities front and centre during this pandemic?

EA: One, we need to make sure that when the next wave of COVID hits, if it is going to, that we have an emergency plan in place with all the appropriate supports and supplies, everything that has been identified now has been dealt with in that we're ready. And that secondly, that we are paying more attention to some of the underlying reasons why the concerns of people with disabilities have not been seen as high a priority. And so we have to address that as well.

BG: Thank you so much for speaking with us.

EA: You're welcome, Brian. Appreciate the opportunity. And thanks for your programme.

[/sc]

[Music: Sombre piano line]

BG: As we said off the top, in the package announced this week, the government said Canadians with disabilities will receive a one-time payment of up to $600 to help offset the higher costs of living during the pandemic. They also plan to help people with disabilities find jobs and to fund five new projects across the country to help people get supportive devices to deal with workplace barriers. Following the announcement, we reached out to Al Etmanski, who told us this is a great start that will impact one-and-a-quarter-million Canadians, but there's still more work to be done and additional progress to be made. He would like to see provincial and territorial governments follow the lead of the prime minister in addressing the increased financial needs of people with disabilities during the pandemic. We also spoke to Elizabeth Mohler, who says as a member of the disability community, I'm pleased to see that our government is taking our needs seriously. I hope that policies around visiting and hospital and the support needed by people with disabilities in hospital will be evaluated. France Rochon told us she's uncertain at this point how much she will benefit from the aid package. But she says given that the provincial government in Quebec has provided her with no financial support, she is, and I'm quoting here, happy to see that Mr. Trudeau thought of us, end quote.

[Sound: The pulsing heartbeat joins the piano]

BG: That's our show this week. If you or someone you love has a disability and you have a story to tell, email us at: whitecoat@cbc.ca. I'm on Twitter at: @NightShiftMD. And the show is at: @cbcwhitecoat. We're also on Facebook. And you can join the discussion at: www.cbc.ca/whitecoat. For more coverage on the coronavirus, check out our podcast, The Dose. This week we answer the question, how safe are my favourite summer activities during the current pandemic? I’ll be joined by Dr. Lynora Saxinger, an infectious diseases specialist in Edmonton.

BG: You can subscribe to The Dose and White Coat, Black Art wherever you get your podcasts. You can also find us on the CBC Listen App. Do us a solid and rate our shows — which helps other people find us! This week’s show was produced by Sujata Berry and Arianne Robinson with big assist from our uber-capable senior producer Dawna Dingwall and help from Jeff Goodes, digital producer Ruby Buiza and Brandie Weikle. Thanks to Austin Pomeroy for making sure our show is never on mute. That’s medicine from my side of the gurney. I’m Brian Goldman. We’re in this together. See you next week.

White Coat, Black Art June 06, 07 2020 Episode Transcript

Social Sharing

More from this episode