A conversation with Maayan Ziv on COVID and people living with disabilities

Maayan Ziv is an award-winning tech entrepreneur and disability advocate. Frustrated by the barriers she was experiencing living with muscular dystrophy, nearly five years ago she founded AccessNow — an app that uses crowdsourcing to pin-point the accessibility status of locations on an interactive map. 

A few days before our conversation, the federal government announced new funding: $15 million to enable community organizations to help Canadians with disabilities adapt to the realities of COVID-19, and up to $600 for individuals who qualify for the Disability Tax Credit (DTC). 

While that measure would have reached about 1.2 million eligible Canadians, one study estimates it would only cover roughly 40% of working-aged adults with a severe disability. What’s worse, on June 11 the bill that included these benefits failed to pass, as opposition parties withheld support. Party leaders blamed one another for the impasse, and so far, no new initiatives have been announced.

Maayan Ziv spoke candidly on the challenges COVID presents for people with disabilities — and the opportunities.

I’d like to start by asking, how are you doing?

I’ve been okay. At first there was a lot of fear that I was experiencing — especially being someone who fits into the category of being immunocompromised. Whenever I listen to stories about how this is really, really dire for people who fit my criteria, there’s a lot of fear around that. And that is a shared experience. Pretty much everyone that is in a similar situation as me, we have had to take a lot of precautions. 

It was difficult at first. Before there was even a lockdown, I was starting to self-isolate. I used to live in Toronto and I just moved out to the country to be in a less dense population. I’m not going to the grocery store or anywhere really, and basically everyone who’s living in the same house is in the same boat. It’s pretty extreme. 

It can be frustrating or difficult, especially now when things are starting to open — it’s really not the case for me. I’ve gone through cycles, from fear, to a sense of grieving for what life was like pre-COVID. Now, I’m in a state of acceptance and really working on leveraging the silver lining that comes along with this new reality. I think that there’s a lot of change and it’s not all bad.

One of those silver linings, from what I’ve been reading, is that some of the ways we’ve adapted because of COVID are actually beneficial to people living with disabilities. Would you agree with that?

A lot of the things that we were seeing in the very beginning — like people writing about what it means to work from home, to access services online or remotely, and people having this panic of, how do I do life if I haven’t done this before? — that was general across the board, every person we talked to said the same thing. 

And for our community of people with disabilities, it was a very interesting experience, because the things that people started realizing that they needed are things that people with disabilities have been advocating for years. The flexibility, working from home or having different work hours, the ability to use online tools as opposed to meeting in person.

Specifically, if you just look at employment, it’s been a huge conversation that has been happening within the disability community for a very long time. Part of it has actually resulted in barriers where people don’t get the job, or they’re not given a fair chance to pursue an opportunity because people will say, ‘Well, if you can’t come into the office every day or if you can’t work in this way, you can’t work for us at all.’

Now, there’s a bigger sense of advocacy for the disability community, that’s been demanding these types of accommodations, you might call it, for years — from home delivery to telehealth. There are so many different aspects of how we’re revolutionizing the world to be post-COVID that have been part of the DNA of how people with disabilities have been wanting to live their lives, and not always been granted access to.

There’s a sense of, welcome to my world, and a real opportunity to develop a sense of empathy and work towards a greater understanding of inclusion because things that were considered accommodations, or things that are accessible specifically for people with disabilities, are now things that every person needs. That is a really unique opportunity to capitalize on and keep working towards inclusive progress.

We’re in a really important moment in time where we hope that things will continue in this direction. We hope that restaurants will continue to offer options, and that offices will continue to embrace a remote work style, and that we won’t just go back to a one-size-fits-all model without the flexibility to be there for every person. That’s something we’re advocating for within the disability community.

“There’s a sense of, welcome to my world, and a real opportunity to develop a sense of empathy and work towards a greater understanding of inclusion because things that were considered accommodations, or things that are accessible specifically for people with disabilities, are now things that every person needs.”

Is there a degree of frustration that you’ve been advocating for this for years and people have been saying, ‘We can’t do it’ — and now all of a sudden, en masse, the world has started doing it?

It’s a good question. For sure, I think that there is some frustration there, but the frustration has always been there. The fact that people with disabilities haven’t been given the same rights and opportunities, that’s a systemic issue, and it’s global. 

That’s why the largest minority group in the world has been advocating for that for so long. But rather than just leaning on that anger and that frustration, having the opportunity to then use that frustration as fuel to capitalize on this chance for change, I think is really the approach that I’m taking personally and I see a lot of people in the community doing as well. 

So knowledge-sharing, improving access with our Access From Home product, and we’ve launched a campaign that’s focused on storytelling, so that people with disabilities can share their own lived experiences about what access from home looks like, so that it becomes more personal and it becomes real for people, rather than this blob of immunocompromised people. 

You mention your Access From Home product — which seems to be the opposite of what you were offering with AccessNow. How did that come about?

At AccessNow we were originally focused on connecting people to the physical world, the built environment, and encouraging and empowering people to get out and do things and be independent. With COVID, we had to quickly start thinking about what our role is now, in a world where people can’t really go out. 

That’s really where Access From Home became part of the solution. We’ve been hearing a lot of people in our community saying, ‘I’m having a difficult time finding access to groceries,’ or ‘What opportunities do I have for online employment? What tools can I use?’ or ‘What sources of education or entertainment do I have access to from home?’

We started building this directory of different companies and services, where people can look for the things that they need in their life, and so have that sense of accessibility and empowerment at home. So we’re contributing in the same way that we’ve always done, connecting people to an accessible world — even if our world is now digital, and accessed through devices at home.

And we continue to invest in our main platform, the AccessNow app. We know that accessibility in the built environment is still, and will always be, critical to achieving independence and equity

What about other supports — like group programs and at-home care? I’ve read they’ve had to change how they’re delivered, or they’ve just gone away. How is this being managed?

Many people are really struggling. I’ve heard nightmare stories from people who are without enough support, because their caregivers have had to pick only one place of employment or don’t feel safe coming to work. I’ve heard from people who have had to isolate from loved ones in order to limit the risk of exposure, or those unable to get basic needs met due to new financial constraints or gaps in care. It’s just hard, it’s hard on everyone, with or without the disability. 

But for those with disabilities, it can be really trying right now and that story is not widely known. We still have a lot of people hanging out in big groups or not practicing proper social distancing or not wearing masks. Many people I feel are not thinking about how those actions, although they might not actually hurt them personally, are hurting other people. 

Do you feel like, as we’re all figuring out this new normal, that your voice is being heard?

Early on Minister Qualtrough put together an advisory committee of people that were focused on disability and COVID-19, and that now there is also a new effort from Stats Canada to collect survey data on the impact of COVID on Canadians with disabilities.

But is it too little too late? I think the $15 million for programs, that’s a significant number but when we talk about funding on the personal level, there’s a lot of people who fall through the cracks. The important thing to realize, and I don’t think people do, is that people with disabilities have a lot of expenses, especially now, and many are without the support they need.

Here’s one tiny example: a caregiver that’s coming and going daily — you need PPE not just for you, but for all the people who come in and out of your life every day to support you. There are all these microtransactions that people don’t really think about, and there’s a whole body of work that talks about the cost of disability — and during this time, it’s even more significant. I’m glad that some funding is there, but I’m not sure it will be enough.

Is there a lesson you hope that we learn out of this? If there was one thing you wish we could hold on to that will lead us towards a better future, what would that be?

I honestly think that it boils down to empathy. I think when there is a sense of empathy we react differently, and we’re kinder to each other, and we are more thoughtful about our actions. I think we’ve been given the opportunity to empathize with another person’s fear, another person’s reality. People start meetings with a meaningful ‘how are you?’ — it is not necessarily something we would have seen in the past, but is a chance to connect with another person, authentically.

Having that kind of human element, we have a unique opportunity to now grow from this experience, and I hope that we do. Human tendency is to get these new paths and then eventually forget about them and go back to the old ways. I hope that that’s not going to be the case. I think we have an opportunity to learn from this, and to invest in a future that is welcoming and inclusive.