Life After Covid-19 with Mahadeo Sukhai of the CNIB

A New Epoch for Canadians with Disabilities

Transcription….Now, obviously working remotely, working on online, being more flexible and creative is a good way to respond to some inclusion issues. But considering that people with disabilities, like all people, are diverse, they’re not homogeneous. They have different needs, and they experience the world, and in this particular situation, in various different ways. This Life After Covid-19 with Mahadeo Sukhai of the CNIB interview continues.

How in response to this, how do you think that Covid-19 has shifted our understanding of employment and social equity, or inequity? What strategies do you think we could adopt to mitigate this inequity?

So, first of all, thank you, Beth, for those very good questions. I’m going to unpack them a little bit. We’re going to talk a little bit about social equity first, then then employment. Then we’ll talk about strategies to mitigate.

And, you know if you want to follow up on something, feel free and no trying to make sure we cover what we want to cover in the time that we have.

The Pandemic Lockdown Experiment

So, here’s an interesting thought. We have a scenario, if you will, a thought experiment that’s unfolding in front of us right now that we’re all a part of. And it goes something like this at the beginning of the pandemic, when country after country declared locked down measures. Even if we don’t call them lock down measures. For all intents and purposes, that’s what they are.

We have euphemisms like shelter in place and things like this. But as country after country, province after province, state after state, region after region start to go down this road or started to go down this road, suddenly, we had a population of human beings, every human being effectively in large collections of humanity, towns and villages and cities and what have you. Who suddenly had to adapt to, for all intents and purposes, a functional disability, And it was the functional disability of not being able to go outside and do things? Whether that was going to the movie theater or going to a restaurant or going to work or going to get groceries or what have you. And so almost overnight, we now had a population that has become involuntarily housebound and that’s the technical term for it.

So what does that actually look like? What does that feel like? What is that experience like for everyone? And the answer is… Well, actually, I’m going to back up and say my guess as to what the answer is. That that looks a lot like the grief that somebody who acquires a disability later in life and by later in life I mean, any time after you’re born, practically or any time after your very young and so I would say acquiring a disability after the age of, say, five. This Life After Covid-19 with Mahadeo Sukhai of the CNIB interview continues.

Now, the Whole World is Disabled

So there there’s going to be some level of similarity to that kind of process, that that sort of stage of grief that people who acquire a disability go through. So now suddenly, the whole world has experienced the acquisition of a functional disability.

We would hope this actually translates to improve social equity in the long run. But I think we need to get there from here because I don’t think people are thinking about it that way. And we add, on top of that, the issue of mental health and the issue of however long we are all sheltering in place. Ontario has started to open up the economy that the slight uptick in cases sort of predates that. But, you know, we might see greater increases over time.

We might see a revisiting of some of the restrictions if things don’t quite go the way that we want. In terms of flattening the curve, different people will talk about different ways the masses actually dealt with. But we won’t get into that. But we have, at the end of all of that when people are able to very slowly go back into spaces that they used to populate or that we used to populate. This Life After Covid-19 with Mahadeo Sukhai of the CNIB interview continues.

Pandemic Stress in the Workplace

We’re going to experience trauma and stress. We’re already experiencing trauma and stress in the workplaces. They’re very stressful places right now. Particularly the beginning of the pandemic when people were losing their jobs left, right, and center because there was no money.

There was a lot of stress that was inherent in the system and there remains a lot of stress inherent in the system. There’s also a lot of stress when people actually start to think about going back into those offices that we abandoned wholesale in march.

So, at the end of the end of all of that, does that mean that we’re going to have a more equitable space in which to live? The answer is not without some level of intention, and we actually have to pay some serious attention to that. But that’s a conversation starter that I think we need to have because there’s a lot of things would just go back to normal. Anyone who actually studies the impact of long-term stresses on individuals or populations will tell you that there is no such thing as going back to normal.

And now the entire planet is going to go through that over the next months or years. So that’s sort of the social equity piece with respect to employment equity. You know, I think James and Alfred made some very cogent points earlier and very good points. But here’s the thing that I’m going to drop on the table for everyone to think about. I think it came through in the chat. Pam mentioned it. Not everybody is the same, and that’s absolutely correct. This Life After Covid-19 with Mahadeo Sukhai of the CNIB interview continues.

Remote Work for Disabled

Not every person with a disability either wants to or feels like they can work from home. Also, not everybody has access to the right technology. And also, not everybody is competent enough to use the technology at the space and pace that we almost have to be able to use it today. And that’s no fault on any human being.

And it’s the fact that, as I said, we abandoned our offices. Right? Overnight we went from OK, I’m going to work tomorrow to actually No, I’m working from home for the foreseeable future. And what do I actually have with me? I have my cell phone. I work from home. I’m a remote worker. I’ve worked from home for two years. Every so often, my bosses try to tell me I need to show up CNIB’s head office in Midtown Toronto a little bit more frequently than I do. I have to say it’s great not to have to take a two and a half hour train ride into the city of Toronto once or twice a week. Right? That’s been very enjoyable and, you know, just planting myself in one space and getting work done is great. This Life After Covid-19 with Mahadeo Sukhai of the CNIB interview continues.

Working From Home for PWD’s

Now I would also like the opportunity to work in a coffee shop, but right now it’s not going to happen, Right? So, when we think about technology and we think about learner preferences, we think about productivity preferences. There isn’t a binary of Let’s go to the office or let’s not go to the office because that “let’s not go to the office” could mean so many things.

And right now, it means one thing. It means working from home but working from home or working remotely, working virtually that there’s a whole spectrum of behaviors in there. And not everybody is going to behave the same way when it comes to some things. And I think that point of diversity is a new point of diversity that we’re going to have to start thinking about and talking about and getting comfortable with within our head spaces because it’s going to be here with us to stay. We’re being forced to confront things that before we never would have necessarily confronted because all sorts of things were just done the way that they were done.

Beth: So, to interrupt you there Mahadeo, I’m really interested in this idea of diversity that people with disabilities are not a homogeneous group. You work and at research office using principles of population data sets. And obviously I have a very sophisticated understanding of how you use data to learn about that experience, that that diversity. How could an inclusive approach to data collection and analysis play a rule and adapting to this new reality?

So, fun fact: The Statistics Canada Covid-19 response crowdsourcing surveys, the ones that go out roughly once every three or four weeks to get hundreds of thousands of responses across the country. There’s a question missing. And the question is, the basic question is: Do you identify as living with a disability? This Life After Covid-19 with Mahadeo Sukhai of the CNIB interview continues.

Mahadeo Sukhai of the CNIB is interviewed by Beth Robertson of the Conference Board of Canada about Life After Covid-19 for persons with disabilities on Accessibility TV

Disability and Accessibility Surveys

Forget the complex disability screener. The basic question of do you identify as living with a disability is missing, right? And this, as you know, this is a common… How am I going to say this delicately? Since this is being recorded, it’s a common conceptual error in survey design that if you aren’t going to use the demographic variable in your analysis, you don’t ask for it.

But the thing is this, you know, we’ve talked about social inequity. We’ve talked about employment inequity. There are all sorts of things that go on in the world around, um, Covid 19 that are inequitable for persons with disabilities.

I’ve actually just spent some time on the weekend looking at CNIB’s Covid 19 response survey data which is a very fascinating thing to actually pick your way through. It’s going to keep my research team very happy for the next few weeks. But the thing is that that’s one study we focused on people who are blind or partially sighted in Canada. It was cloned off of a similar study done by some of our collaborators in the United States. But it’s qualitatively different from about six or seven other Covid 19 response surveys that I was aware of. And only one of those six or seven, which I was actually invited to talk to them about, and that one actually hasn’t gone into the field is yet in that conversation this afternoon. And I only got the notice yesterday.

So, the challenge is that when we talk about inclusive data collection, inclusive analysis, we also have the issue of how fragmented our measurement system is right now. And are we so fragmented that that we aren’t aware of all of our potential friends who are asking the questions that we want to be asking? You know the saying, what gets measured gets done.

It’s so true. But there’s a few corollaries to that statement. What gets measured gets done, right. And it comes back to the question: What should we do about all of this?

And Beth, tell me when you have to cut me off my soapbox. But you know when we when we think about what we’re measuring, if we’re not asking the right questions, the inclusive questions, if we don’t know how to do that, then we’re not going to get the right data. If we don’t get the right data, we’re not going to make the right choices. I’ll give you an illustrative example in 30 seconds. This Life After Covid-19 with Mahadeo Sukhai of the CNIB interview continues.

CNIB Research on Transportation

One of the first surveys that we did when I took over C.N.I.B’s research department we asked the question about transportation, and we said, how many of you have access to transportation? And the answer was 75% of people who are blind or partially sighted who are clients of CNIB have access to transportation. I will cheerfully admit that was the wrong question. The question shouldn’t have been. Do you have access to transportation?

The question should have been. Do you have access to on demand transportation? Because people generally in the community get the opportunity to go where they want, when they want, not right now, but before, right? And so, if you’re not asking the question of can you go where you want when you want, then you don’t have the right thing that you’re trying to understand, and that means you can’t develop the right policies and practices in order to address that thing.

So, we’re not we’re not asking the right questions. We should be asking the right questions, and then we should be thinking about how we analyze the data, um, in an inclusive way. And one of the things that we’ve done for 2.5 years as being head of CNIB be researchers has been to actually take a deep dive into how do we do inclusive research? And how do we make the work that we do as researchers, inclusive both from the collection and then from the analysis end. It’s a fun space to be in, but it’s a space that that were almost alone in because unless I poke and prod collaborators, I find that they don’t necessarily go there.

Inclusive HR Policies in the Workplace

But what does that mean in terms of the question that you asked originally about addressing inequities? It means that is it time for us actually start thinking and executing on inclusive design and universal design principles in constructing all of our spaces. We’ve gone from in person work to virtual work, but all of our HR policies are built around the office, right?

It’s time to rebuild the HR policies. Can we rebuild them from an inclusive design? A universal design perspective? That’s what we need to be doing going forward.

Mahadeo Sukhai’s Bio

Mahadeo Sukhai is currently the Head of Research and Chief Accessibility Officer of the Canadian National Institute for the Blind (CNIB). As the world’s first congenitally blind geneticist, Mahadeo maintains a strong interest and experience in the graduate and post-doctoral trainee environment, science education, science outreach, and research into the quality of and access to higher education by students with disabilities. His expertise ranges from next-generation sequencing data analysis and pre-clinical drug development, to governance roles and performance measurement in higher education and not-for-profit organizations.

Bath A. Robertson’s Bio

Beth A. Robertson is the Senior Research Associate for Inclusion; Education and Skills; Future Skills at the Conference Board of Canada in Ottawa. She is a social scientist who specializes in Equity, Diversity and Inclusion, with expertise in the areas of gender, disability, technology and industry. She has served as Director of the $1.1 million small grants program “Gendered Design in STEAM (science, technology, engineering, art and mathematics) for Low and Middle Country,” based out of Carleton University with funding from the International Development Research Centre.

In addition, she was Adjunct Curator of Gender and Globalization for Ingenium: Canada’s Museums of Science and Innovation. Robertson has hosted mini-documentaries for Accessibility TV and was co-primary investigator of Carleton University’s Disability Research Group. She has curated exhibits, published articles, given public presentations, organized symposiums and developed pedagogical materials related to accessibility, human rights and technology.

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