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EPISODE DESCRIPTION:

A lot of us haven’t thought about the fact that the way we’re experiencing the world in the midst of a deadly virus, might actually just be every day in the life of a disabled person, even before a pandemic. Maayan Ziv, disability rights activist and the founder and CEO of AccessNow, a digital accessibility platform for the disabled, talks about the struggles and rights of Canada’s disabled community – and what we need to do to make inclusive and safe spaces for everyone in our collective experience.

WHAT YOU’LL LEARN:
  • The experience and challenges for the disability community during COVID-19  
  • How Ontario and Canada’s COVID-19 response have left out the disabled and vulnerable
  • Maayan’s experience during COVID-19
  • Getting tested for COVID-19 for people with disabilities
  • The need to include people with disabilities in our collective shared experience
  • Ontario’s goal to be barrier-free and accessible by 2025
  • The opportunities for people with disabilities during the pandemic
  • The story of AccessNow and how tech can move accessibility and inclusion forward
  • How people can be an ally for people with disabilities and make a difference today
  • And so much more!
COMPLETE TRANSCRIPT OF THE EPISODE:

Saba: From the Toronto Star, I am Saba Eitizaz and This Matters.

During the month of fighting this pandemic, we are all experiencing the world as many of us have never done before. A world that is not easily accessible, where we are restricted by a deadly virus, and where our work, finances and our day-to-day lives have become severely limited. This has become the new normal. In a way, for the first time, we are sharing the same lived experience as many others whose lives have always been this way even before the dynamic.

VICE recently did a video series collecting the voices of disabled people about how they’re going through this time. “It reinforces this feeling of being kind of left behind and iced out of society.” “We live in a world that’s filled with ableism and biases against the disability community.” “Disabled people’s lives matter. They deserve to live through this pandemic.”

More than 2.5 million Ontarians live with some kind of disability. A lot of them are seniors, one of the most vulnerable when it comes to contracting COVID-10. Living with a disability itself makes it challenging enough to get through a day. What we’re going through every day in the midst of a pandemic–that might be every day in the life of a disabled person but COVID-19 has posed bigger roadblocks. From equitable access to health care, financial constraints to something as basic as being able to access the crucial information they need at this time to protect themselves from a pandemic with dignity. 

All of these are problems that many disabled people say makes them feel like they’ve been forgotten. So today I talked to a disability rights advocate and entrepreneur Maayan Ziv to speak about the struggles and the rights of the disabled community – and what we need to do to make them a part of our conversation and our collective experience. 

Maayan Ziv is a disability rights activist and founder of the digital platform AccessNow. 

Saba: Thank you so much for joining me on the podcast. 

Maayan: Very excited to be here, Saba. 

Saba: So the time of this pandemic has been difficult for all of us, but you think we’re missing an important conversation here? How has COVID-19 been exceptionally challenging for the disabled community?

Maayan: I think there’s definitely an entire conversation that I don’t think is known to the general population. I can remember when the lockdown first hit. There were a lot of these really organic scrappy Google Docs that were happening between people with disabilities. They were trying to scrounge together resources, information, and different people that they could lean on to put together their own guides, their own educational materials, and their own plans to prepare for the pandemic that was kind of happening all around us. 

Even just that signal–that it took people within their own little communities and their own networks to try and look beyond mainstream media to find their own resources–was the first signal to show that the disability community wasn’t really part of the conversations that we were hearing. From how to prepare, how to plan, how to manage your own health, the risks associated, and terms like immunocompromised group that we adhere to in the media. Those often came with this fear of, “Well, what if I identify as one of those people?” On a flip side, we heard people go, “Oh well,I’m not that person. I should be fine.” The entire way that narrative started to roll out in the early days of COVID have really lasted with us. We are beginning to finally see people hopefully realize that people with disabilities specifically are really taking quite a difficult blow during this really difficult time for everyone. 

Saba: I’m sure, and having to collect and find your own resources during what is already such an anxious time, that’s actually what I wanted to ask you. How do you think Ontario or overall Canada has done so far in protecting the disabled during this COVID-19 crisis? Specifically, do you feel like their needs might have been left out during the emergency planning and preventive measures and all of the information that was coming out like you said a lot of people were just trying to generate their own resources?

Maayan: Yes. I think that when it comes to the education front, other than saying that COVID-19 was obviously most aggressively hurting people within a immunocompromised group, there wasn’t really much more information for people with disabilities to grasp on to. Even things like: What happens if I get COVID? Should I go to the hospital like somebody else or not? Would I be able to go with a caregiver? There have been stories of people who’ve actually been denied care because they have a disability or a pre-existing condition. They were almost even nervous to disclose out of fear of not being treated because of that. We’ve heard so many stories about scarcity of resources and the need to flatten the curve but the narrative definitely did not pay enough sensitivity to the needs of people with disabilities. As things have progressed and evolved, we’ve started to recognize the different needs of different people. Even the stats show that the people who are being hit the hardest are within long-term care facilities or people who are within an elderly population. Some of the narratives or the understanding that needed to come out earlier to prevent that from happening in the first place, I think we are really missing. It’s unfortunate because now we’re actually seeing the results of that.

Saba: To a more personal lens, what’s been your experience like managing through this pandemic?

Maayan: For me, I was pretty quick to realize that things were gonna get serious pretty quickly. Even before there was any kind of enforced lockdown, me and many people that I know in a similar position went into isolation pretty quickly. Usually I’m in the city; I moved out of the city to remove myself from a dense population. I moved to spend time with my family to also make sure that if there were any gaps in my care, because now I wanted to also reduce the amount of people who are coming and going into my home. I moved to my family home and started to make these adjustments to my life to prepare but I had no idea the extent or the length of an isolation period that we would be in. My family and I have definitely made a lot of sacrifices when it comes to engaging within the community. Even now as we get into other phases where things start to open up, we really still happen to be quite isolated and quite strict on the measures that we take so that there is no risk or as much of a reduced risk of exposure as possible.

Saba: You’re talking about all of these extraordinary measures that you had to take in this challenging time. Did you feel there were gaps in care or something you had to prepare for? Did you struggle with that?

Maayan: I lost one of my caregivers who was needing to take the TTC everyday to come and go, and she works in many places. That was the first thing that happened where I started to have to juggle some of my own care. I was thankful and fortunate that my family was able to step in. But that’s really not the case for many people. I’ve heard stories from friends of mine who are now with many hours without care or scrambling to find other people who could step in. I’m even trying to mitigate. I need help but I’m also afraid to let somebody into my home. There’s so many kind of things that people with disabilities have had to negotiate with themselves just to get through the day which I think these kinds of narratives are really not known to the general population. Things that really can come at quite a shocking level when you start to connect all the dots of the people who are either losing employment because they’re often caregivers for other people or people on the other end who are in need of care and not able to actually get that. 

Saba: Even something basic in terms of COVID testing for example. How easy or hard is it for people with disabilities to get a test? Or to get over the anxiety and feel like they need a test?

Maayan: Yeah, it’s a good question. I personally have not felt that I needed a test and haven’t gone through that process. I think one of the biggest concerns that I’ve heard from within my community is I may need a test but also determining whether or not the risk is worthwhile for me to expose myself to a population outside of my own home in order to receive the test. There are these kinds of negotiations that people have to have themselves. But beyond testing, if you look at even other procedures, I’ve always scheduled to go and meet with the doctor for an ongoing procedure that I’ve been looking to book. I’ve really had to figure out how dire or how bad it need to get before I felt safe enough to risk going into hospital to get help for something else. I think that’s really the story that I’m hearing from a lot of people whether it’s to fix something on my wheelchair or I have another medical appointment that’s been delayed, cancelled or that I need to keep but I don’t feel safe enough to actually go and get the help I need right now. 

Saba: What about us as a society? What have you observed that we’ve been doing that could be negatively affecting disabled people during this time?

Maayan: I’m glad you asked, Saba. Honestly, this is the biggest pain point for me personally and one that we’ve really worked harder on trying to improve from something as simple as keeping distance from other people and from recognizing that although you on a personal and individual stance might feel comfortable to be closer to somebody else, there are many other people who don’t feel that that is a safe option for them. To not have the ability to control that when they’re out in public and for someone. For example, for me, I was taking a walk and someone just had to walk by really close to me with a group of people and didn’t wear a mask. On some level, I actually felt violated. I felt like there was this trust that had been broken and that it was actually quite a violent act. It seemed so simple. Pre-covid this is something we would never have thought about but in these current times something as simple as hanging out with a group, not keeping distance, not wearing a mask, these are simple things that we can do to help protect others that are in a more vulnerable or risky position. 

Saba: As you said Maayan, these are just basic considerations and thoughtful actions that everybody should be practicing and yet we see a lot of the experiences like you mentioned. How can we understand that disabled people occupy the same spaces as us that they’re part of our collective shared experience? What do we need to do to help and include them as individuals and as a society?

Maayan: I think the first thing that really needs to happen–and I’m seeing quite a reluctance from many people to do this–is to recognize that things are not as they were before. That’s something as simple as going to a restaurant and sitting on a patio might have not had any impact on anybody else other than yourself in the past. But now that’s not the case. And so making these sacrifices or these adjustments in your day-to-day life or asking: Is this a must-have or is this a nice to have? These kinds of questions are things that we each need to grapple with every day. I know that it’s tiring and I know that after so many days and so many months of this quarantine-pandemic world that we’re living in people have become frustrated. They want to go out and they want to experience summer. They want to feel lifted from this kind of really strict measures that we’ve been living in. But as we move into further phases and opening up too quickly, I think we’ll end up seeing a reverse of what we want. The consequences and the sacrifices that we’ve made until now are really important to protect not only for ourselves as an entire society but definitely for those who are kind of in a more vulnerable category. 

Saba: I want to speak about accessibility since that’s your platform. We know there’s legislation according to Ontario’s accessibility law to make Ontario barrier-free and accessible to people with disabilities by 2025. How do you think things are progressing? Does it feel like Ontario is becoming more friendly to people with disabilities?

Maayan: Pre-covid this was such a different conversation. It’s so interesting too. I work at a company that’s focused on connecting people with and without disabilities to an accessible world. Really looking at the built environment and determining if these places have accessible washrooms, parking spots, elevators, and anything that someone with any kind of access-need would need to know about. In the world that we live in now, a lot of that has been really closed off. For me, I think we have this opportunity first of all to take a moment to generate empathy. We’re all, for the first time in our lives, many of us are experiencing what limited or no access is actually like. And that’s really quite a transformational moment. For the first time, as a collective around the world, people have the opportunity to have a glimmer of a moment to understand what it’s like for a person with a disability to not have access, whether it be to their store or to their community, to do the things that they normally would like to do. I think that’s actually a really exciting opportunity. Although it comes with a really difficult moment that no one would ever wish for, it does present itself an opportunity to generate empathy and to think about what accessibility means not just for people with disabilities but how accessibility can actually benefit every person on the planet. 

Saba: In a way you’re saying that the pandemic somewhat hindered moving towards a more accessible space for Canadians but it’s also built this space of empathy where everybody is now in the same boat.

Maayan: I hope so. Things like: delivery of groceries or the ability to work from home or to do anything remotely, to use technology, to gain access in a way that you might not be able to out in the world. These are the kinds of tools and accommodations that people with disabilities have always advocated for and all of a sudden everybody across Canada is needing to do the same thing. All of a sudden when Zoom doesn’t work right people get frustrated or if they’re not able to get their groceries delivered within a certain reasonable amount of time it’s like, “Oh, this app doesn’t work well.” Yet this is the experience that people with disabilities have had forever and accessibility of the ability to get groceries delivered to your door, to use technology in an accessible way, to gain employment that might be remote or with flexible hours, these things actually benefit all of us. These are all components of accessibility. 

Saba: I want to talk a little bit about your work about your platform AccessNow. How has that made a difference in the life of users of disabled people? 

Maayan: It really started with my own personal experience. I’ve used a wheelchair throughout my whole life. I’ve been constantly curious and going places that often people have told me “That’s not gonna be accessible” or “I don’t think you can”. I have just had to work to be creative to figure it out. Along the way, the frustration that builds up is a person who constantly has to go through the back door, or the garbage entrance, or shows up at a hotel in New York City and there’s four steps to the entrance, my bags and everything packed. Those constant moments of frustration really are the catalyst that led to the development of AccessNow. Today the whole point of AccessNow is to empower people with disabilities and anyone who needs access: parents with strollers, delivery services and features–you name it. We all kind of need access at some point. It’s really to empower people to connect with places that are actually welcoming and places that are barrier-free. It’s to highlight information about places that might not be accessible as well so that we can begin to inform hopefully future investment and future development to barrier-breaking. In Canada, we have new laws that address accessibility. In Ontario, we’ve had the AODA for a long time. But how can we now use data to actually invest in and understand where we need to improve upon when it comes to accessibility? I think that’s really been the biggest power that we’ve had at AccessNow. It’s giving agency and economy to people with disabilities who now have the ability to raise their voices and contribute to something that’s so much more impactful as a whole.

Saba: You’re talking about data and technology. How important is the role that I can play in creating more accessible and equitable roles? What are you most excited about right now in terms of tech platforms that can actually do this?

Maayan: Technology I think is the greatest connector, and in many ways, the most empowering tool we have. It lets us do things way beyond our human physical ability. It connects us to people and places around the world. Constantly we’re discovering new ways that we can innovate or create new technologies that allow us to do more stuff whether it’s to create new civilizations on other planets or discover things that we didn’t know about ourselves as a humanity. I know that sounds super philosophical but I think for me it’s really inspiring to think about the ways that we can use technology. For one, one of the things that’s most exciting to me right now is the application of artificial intelligence to empowering people with disabilities to do more. I think that that’s a new frontier in the world of technology that is really really exciting.

Saba: I want to end this by bringing this conversation back to us as individuals and as a society, because it does eventually fall on us. What are some changes that people can make today right now that could make a difference beyond this conversation about putting more financial resources beyond technology? What can we do?

Maayan: The simplest thing you can do is be aware that your actions are actually not limited to only your own footprint. It sounds so simple and basic but it’s so important in the time that we live in. So think about the impact of your actions on other people. Take a moment to be educated if you aren’t yet about the circumstances the other people are living in. The simple thing like wearing a mask when you’re in public or keeping distance from other people are really really important. Then I think it just becomes a matter of being curious and comfortable enough to not be familiar with the subject matter like acceptability or perhaps the perspective of someone with a disability but not allowing ignorance to be where the conversation ends. There are so many resources and conversations online and so many initiatives that are happening around the world when it comes to disability and accessibility advocacy. We live in a world where it’s not really an option to continue to live in kind of a ignorance’s bliss mentality. It’s really time to recognize that we have let many people down. Finding ways to correct that, finding ways to create more just or inclusive conversations even as a start is what I believe will be the first step to creating a much more inclusive future.

Saba: Thank you so much for your time Maayan. I think you’ve got a lot of people thinking today on this episode. 

Maayan: Thanks so much, Saba.

Saba: That was Maayan Ziv, a disability rights activist and founder of the digital platform AccessNow.

That’s it for today! Thanks so much for listening. This Matters is hosted and produced by me Saba Eitizaz, Adrian Cheung, and Raju Madhar. Produced and mixed by Sean Pattendon. Our director of programming is JP Fozo. 

We want to hear what stories matter to you. Please send us comments, questions, or ideas to thismatters@thestar.ca. Please consider supporting the journalism the Toronto Star newsroom does at thestar.com. 

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