A conversation with Maayan Ziv on COVID and people living with disabilities
By Stephania Varalli
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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听听鈥� an app that uses crowdsourcing to pin-point the accessibility status of locations on an interactive map.听
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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).听
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While that measure would have reached about 1.2 million eligible Canadians,听. What鈥檚 worse, on June 11 the bill that included these benefits failed to pass, as opposition parties withheld support. Party leaders听, and so far, no new initiatives have been announced.
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Maayan Ziv spoke candidly on the challenges COVID presents for people with disabilities 鈥� and the opportunities.
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I鈥檇 like to start by asking, how are you doing?
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I鈥檝e been okay. At first there was a lot of fear that I was experiencing 鈥� 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鈥檚 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.听
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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鈥檓 not going to the grocery store or anywhere really, and basically everyone who鈥檚 living in the same house is in the same boat. It鈥檚 pretty extreme.听
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It can be frustrating or difficult, especially now when things are starting to open 鈥� it鈥檚 really not the case for me. I鈥檝e gone through cycles, from fear, to a sense of grieving for what life was like pre-COVID. Now, I鈥檓 in a state of acceptance and really working on leveraging the silver lining that comes along with this new reality. I think that there鈥檚 a lot of change and it鈥檚 not all bad.
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One of those silver linings, from what I鈥檝e been reading, is that some of the ways we鈥檝e adapted because of COVID are actually beneficial to people living with disabilities. Would you agree with that?
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A lot of the things that we were seeing in the very beginning 鈥� like people writing about what it means to work from home, to access services online or remotely, and people having this panic of,听how do I do life if I haven鈥檛 done this before?听鈥� that was general across the board, every person we talked to said the same thing.听
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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.
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Specifically, if you just look at employment, it鈥檚 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鈥檛 get the job, or they鈥檙e not given a fair chance to pursue an opportunity because people will say, 鈥榃ell, if you can鈥檛 come into the office every day or if you can鈥檛 work in this way, you can鈥檛 work for us at all.鈥�
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Now, there鈥檚 a bigger sense of advocacy for the disability community, that鈥檚 been demanding these types of accommodations, you might call it, for years 鈥� from home delivery to telehealth. There are so many different aspects of how we鈥檙e 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.
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There鈥檚 a sense of,听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.
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We鈥檙e 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鈥檛 just go back to a one-size-fits-all model without the flexibility to be there for every person. That鈥檚 something we鈥檙e advocating for within the disability community.
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鈥淭here鈥檚 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.鈥�
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Is there a degree of frustration that you鈥檝e been advocating for this for years and people have been saying, 鈥榃e can鈥檛 do it鈥� 鈥� and now all of a sudden, en masse, the world has started doing it?
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It鈥檚 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鈥檛 been given the same rights and opportunities, that鈥檚 a systemic issue, and it鈥檚 global.听
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That鈥檚 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鈥檓 taking personally and I see a lot of people in the community doing as well.听
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So knowledge-sharing, improving access with our听听product, and we鈥檝e launched a campaign that鈥檚 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.听
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You mention your Access From Home product 鈥� which seems to be the opposite of what you were offering with AccessNow. How did that come about?
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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鈥檛 really go out.听
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That鈥檚 really where Access From Home became part of the solution. We鈥檝e been hearing a lot of people in our community saying, 鈥業鈥檓 having a difficult time finding access to groceries,鈥� or 鈥榃hat opportunities do I have for online employment? What tools can I use?鈥� or 鈥榃hat sources of education or entertainment do I have access to from home?鈥�
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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鈥檙e contributing in the same way that we鈥檝e always done, connecting people to an accessible world 鈥� even if our world is now digital, and accessed through devices at home.
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And we continue to invest in our main platform, the听. We know that accessibility in the built environment is still, and will always be, critical to achieving independence and equity
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What about other supports 鈥� like group programs and at-home care? I鈥檝e read they鈥檝e had to change how they鈥檙e delivered, or they鈥檝e just gone away. How is this being managed?
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Many people are really struggling. I鈥檝e heard nightmare stories from people who are without enough support, because their caregivers have had to pick only one place of employment or don鈥檛 feel safe coming to work. I鈥檝e 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鈥檚 just hard, it鈥檚 hard on everyone, with or without the disability.听
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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.听
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Do you feel like, as we鈥檙e all figuring out this new normal, that your voice is being heard?
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Early on听听put together an听, and that now there is also a听
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But is it too little too late? I think the $15 million for programs, that鈥檚 a significant number but when we talk about funding on the personal level, there鈥檚 a lot of people who fall through the cracks. The important thing to realize, and I don鈥檛 think people do, is that people with disabilities have a lot of expenses, especially now, and many are without the support they need.
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Here鈥檚 one tiny example: a caregiver that鈥檚 coming and going daily 鈥� 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鈥檛 really think about, and there鈥檚 a whole body of work that talks about the cost of disability 鈥� and during this time, it鈥檚 even more significant. I鈥檓 glad that some funding is there, but I鈥檓 not sure it will be enough.
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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?
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I honestly think that it boils down to empathy. I think when there is a sense of empathy we react differently, and we鈥檙e kinder to each other, and we are more thoughtful about our actions. I think we鈥檝e been given the opportunity to empathize with another person鈥檚 fear, another person鈥檚 reality. People start meetings with a meaningful 鈥榟ow are you?鈥� 鈥� it is not necessarily something we would have seen in the past, but is a chance to connect with another person, authentically.
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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鈥檚 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.
Throughout the pandemic we’ve heard the phrase “We’re all in this together” 鈥� but are we?听Looking closer, the impact of COVID-19 is not equal for all. The听30% Club Canada听and Women of Influence are partnering on听听鈥� a series that amplifies the voices of community leaders, sharing unique challenges and thoughts on how we can build a better, more inclusive future.
