Remarkable Insights: Season One Finale

Transcript

Viv Mullan 00:00

Hello, I’m Viv and welcome to the last episode of season one of Remarkable Insights. And today also marks International Day of People with disability. This year, the United Nations is observing this date by exploring the role of innovation in fueling an accessible and equitable world which fits the theme of our podcast perfectly. To start today’s episode, we took the microphone around the remarkable community to ask those with lived experience what today means to them.

Katy Gaastra 00:55

My name is Katy Gaastra. And I have cerebral palsy. What’s so exciting to me about the theme for this year’s International Day of People with Disabilities is the fact that this community has deep roots in innovation. We’re an adaptive group. And we’re changing the way that the world understands things like accessibility, equity and inclusion through the power of technology and through the shift in language. And by harnessing the power of innovation and technology. We’re challenging expectations about what disabled people are truly capable of. My life has been completely transformed by mobility technology in the last six years. It’s allowed me to reimagine a better future for myself, but also to be a part of a better world where people with disabilities are really the ones leading the call for change.

Sophie Marmont 01:50

Hello, my name is Sophie Marmont and I have cerebral palsy. To me, International Day of people with disability is an important day, as it is the one that is internationally recognised by the UN. The day for me highlights the achievements of people with a disability and sometimes highlights that we have a long way to go in this space. To me the day is an opportunity to start the conversation that continues throughout the year.

Viv Mullan 02:39

This season, we traveled virtually across the globe to speak with some remarkable people who are harnessing the power of tech design and advocacy to shape a more accessible, inclusive and equitable world. For this season finale, we’re going to play some unheard moments from these conversations. First, let’s head to New York to hear from Forbes columnist Jonathan Kaufman about how the disability community has and continues to transform tech at large.

Jonathan Kaufman 03:04

A Metaverse has to be accessible, you know, the accessibility I think it’s such a big part of the technology now that we’re sort of pushing in. And so the idea is to say, we need to think about what we can learn from people with disabilities who’ve had to navigate the world for ages, I mean, throughout history, and realise that the world wasn’t designed for them. So we have to rethink how we design for this new environment for this new work environment. And that I think is important, but I also think they’re not doing this for nothing. I’m under no illusion that they’re doing this. Oh, because this is really wonderful. Yeah, there’s certainly some of that, but there’s a cost benefit to this. And it’s a cost benefit for people with disabilities who want to work, want to continue to work, or people who are aging for saying, okay, you know, what retirement is in for me, I want to sort of take the next step, but I’m dealing with health issues, but my brain works. And I can continue to work. That’s going to be a very interesting question. I think, as particularly baby boomers start to retire, or reimagine what’s the sort of next step beyond core of their lives and dealing with again, disabilities, and particularly those that are at the C suite are saying, You know what, maybe I don’t want to retire, maybe I want to do something else, and to reimagine what the world of work looks like. That in itself will have a trickle down effect.

Viv Mullan 04:43

Charli Skinner, an advocate and co-founder of Soda, a tech company, moving the dial on accessibility and inclusion explains why chronically ill and disabled people are natural entrepreneurs.

Charli Skinner 04:54

Disabled people are innovators. I almost even want to call them hustlers because they literally have to hustle their way through If, you know they’re hustling their way through creating alternative solutions that because they’re not being offered them, so, you know, disabled people are the people who are at the forefront of working, you know, multiple different interesting jobs not doing nine to fives, you know, everyone talks about oh, the nine to five working for the man, it’s awful, meanwhile, disabled people who realise that years ago, and are hustling their way through their lives. So there’s a lot to learn from us hustlers, I think. But yeah, I mean, there really is this really important space around enabling people into those environments. And, you know, for example, recognising that remote work actually is something that people can do productively tech can enable working processes as well. Employers can use tools to be able to stay in contact with their employees in a much more facilitated way, these days as well. And then I think there’s, you know, for me, I can use myself as a good example of someone who was on that middling ground and has managed to establish a place of balance with my work, it is a constant work in progress. But I actually made a shift from a really big shift. And it was a difficult decision to make from going from working from for a nine to five job to saying no, I actually need to work for myself, because the only way that I will be able to create the access environment that works for me is if I work for myself, but it’s also a huge negative because the fact that I was driven out of work because I couldn’t access work, and essentially actually was left with no other choice than to start my own thing in itself is a problem. So we, you know, we need to create the environments for people to be able to choose whether they want to do something that is a, you know, the equivalent of the nine to five or a part time role, or working for themselves, or working as a freelancer and being able to explore all those models with all the tools that are available to them without being forced to just assumed that it’s not possible for them to work.

Viv Mullan 06:52

Professor Sébastien Jodoin, director of the disability inclusive climate action research programme shines a light on the intersection between disability and climate change.

Sébastien Jodoin 07:03

We are doing the first empirical study on the climate resilience of people with disabilities in a region of India, and looking at sort of how climate change there affects people with disabilities, but also like what tools, what strategies have they developed to be resilient? What lessons can we learn? And I have to tell you, one of the reasons we chose India actually, was that they had done a better job of protecting people in heat waves than many Western countries have. They had these heat waves that were quite deadly many years ago. And more recently, honestly, they’ve had fewer deaths from heat waves in India than we’ve had in Canada. So why? So we have a few hypotheses, but that’s why we’re doing the research, right. And also actually here in my hometown, as Montreal is sort of trying to address its largest share of carbon emissions. So in the transportation sector, there’s all these things happening, right. So introducing rapid bike lanes, electrifying vehicles, car sharing programmes, of course, expanding the transit system. And this is the thing that we’re recently doing is trying to figure out, okay, well, how many of these solutions are accessible? Like how many of these solutions are perhaps even creating new barriers for people with disability? So we just don’t know. And that’s why we’re doing this research. But one of the things that we’ve learned, for instance, is that these rapid bike lanes, they have not been designed in ways to think about like, how does a blind person cross the street? If this, like rapid die claim is like designed for the bikes to basically never stop? So again, it’s sort of no one thought about that barrier. And no one thought about how you could design it in an inclusive way. And I like to say that disability inclusive design is just, it’s just good design, right? It’s just figuring out how to build something that’s going to benefit as many people as possible.

Viv Mullan 09:04

Matt Pierri, CEO, and co founder of sociability has built an app designed to empower people to understand the social and economic advantages of accessibility

Matt Pierri 09:14

Technology for lots of people, particularly non disabled people, has given them back brain space, right. So you can type into Google Maps, point A and point B. And it just tells you how to get there. And you don’t really need to think anymore. You don’t need to read a map, you’re not looking at the stars, you don’t have a compass, right, it just tells you when to get on the bus or the tube or the taxi, and you just get there. You have all these things at your fingertips. And we live in a world of so much information. A lot of these sites just help you pass that and kind of get to the things you need. And then take away that need to sort of use your brain to figure out a bunch of that stuff. for disabled people that doesn’t work. Disabled people are still working to do all those things. And often, you know, two or three, four or five times harder than non disabled people. And that takes energy and time. So for me to book a restaurant or to meet a book or Hotel takes much longer than somebody who doesn’t have a disability who can just go online and click the price and location and pick something they like. So sociability, our mission is really to organise the world’s accessibility information in a way that removes this anxiety and the stress and his time and his effort for all these tasks that still exist for disabled people today, because the platforms and technologies that we’ve built don’t have the right information. So you know, I can’t use Google Maps to readily find a way to get from point A to B, because it doesn’t know which forms of transport are accessible to me, if we can help them unlock that. That means that for disabled people, transport is much easier. And we don’t need to build a navigation platform or, you know, a booking site, or whatever it is, the goal really is to help unlock all these other existing platforms and services. And to really be in some sense, that idea of like a layer of the internet that can help, you know, facilitate and empower, to sell people to access all these other services and platforms that exist, and to give them back their brand space to give them back that time to give them back that you know, kind of confidence, peace of mind that they don’t have, but that other people have and take for granted.

Viv Mullan 11:12

Creator of NFTY collective Giselle Mota is on a mission to bring disability inclusion and representation into web three and the metaverse.

Giselle Mota 11:20

We’re working with an individual who has muscular dystrophy. And he is an artist and actually based in Singapore and an amazing rapper, super talented young man. And we he, you know, he lives with the reality that he just, he doesn’t know because he has a degenerative disease, and what I’m really aiming to do as well. And I don’t want to get emotional here. But what I am aiming to do is also give people a chance to see themselves in an experience. That’s so cool, and so forward thinking that they could say I was a part of that during my lifetime, I was a part of this experience. And so those are the kinds of doors that open up as well. And now we are being invited to create games and inclusive art galleries with some of our characters and learning and development experiences for organisations. And some people have asked us Can we use your characters to, you know, add on to our products, so that we can, if we do have a little character in our product somewhere, it can be someone with a disability. So there’s so many different opportunities that are coming up, and the sky’s the limit.

Viv Mullan 12:23

Bernard Chiira, founder of Innovate Now is on a mission to raise the business profile of investing in assistive tech startups in Africa.

Giselle Mota 12:31

Assistive Technology has not proven itself, you know, as a high return sector, yet, we are trying to take it there. But many investors, you know who our commercial investors are, who are looking at it from especially the metrics of just the return on investment, they need to see that there’s potential, they need to see that building an assistive tech business can be equally rewarding as being a FinTech, for example. And this is very difficult to do when you don’t have, you know, cash for r&d. And some of these innovations, they do require, you know, significant amounts of capital, especially when you have things like hardware involved, or new disruptive technologies, you know, involved. And so what we strongly believe in is that we need to work with impact investors who can see the potential of these businesses at a very early stage and give them access to early stage capital, that then goes ahead to make them ready and investable for your traditional investors down the line. And I think that’s why some of the amazing initiatives we’re seeing coming up, make a significant step towards saying how do we address this gap? How do we link disability innovators to capital and set them up on a path to become investable and sustainable? And I think this should be the mindset of every accelerator or programme that supporting entrepreneurs in this space. We all know that there’s been proven ways of helping companies that are changing the world today. Succeed and we need to bring that mindset we need to bring that talent we need to bring that capital to the disabilities.

Viv Mullan 14:27

Andrew Gurza, Chief Disability Officer at Bump’n provides a unique glimpse into sex tech and disability.

Andrew Gurza 14:34

We made up that role for me, I said to Heather, you know, we never have disabled people in power. And companies. We never have a CEO with a disability. We never have a CFO with a disability. And she was like, Well, what would you want to do in this role? And I was like, I want to make sure everything is accessible. And we’re talking about disability as often as we can. And she was like, Well, what if we just made him a role, Chief disability officer, so that you can be in the room and look over all of our stuff and make sure it’s all the way you want it to be, before we do anything. And to the, from the beginning of anything to the end of any part of the project, there’s a disabled person looking over, it’s been really, really powerful to say that I do that. And I think we’re the first in the world to ever do something like that. And it makes me really proud to be like, see, disabled people can innovate and make change, and be in positions of power. Like, it’s really it’s to me, it’s so important. And also, it was using both Heather in my expertise, she’s got 10 plus years in marketing, and she’s really, really good as an ad person. I have 10 plus years, being a public figure in the disability space. So we were like, Let’s do this together and some more so then, you know, starting that conversation, it was about reigniting conversation around sex. It’s always been everywhere to have the right to have and saying, This toy doesn’t have to be about masturbation. It’s not always about Yeah, you gotta get off. It’s about liking the intimacy you can have with the toy. And so I love that it’s able to do both those things.

Viv Mullan 16:02

Wow, what a year. It’s been so many amazing moments, talented, insightful guests and topics to the full unedited interviews, please subscribe to our YouTube remarkable tech. I’m Viv Mullan. And this has been the remarkable insights podcast. At Remarkable we’re committed to developing tech startups that positively impact people with disability and amplify human potential for those who want to join the remarkable family applications for our 2023 accelerator program open now. So head to our website to learn more

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Remarkable Insights: Andrew Gurza

Please note the following episode contains sexual themes and references.

Transcript

Viv Mullan 00:03

In the following episode, we chat all things sex, tech and disability with none other than the brilliant Andrew Gurza. Andrew is an award winning disability awareness consultant, and the Chief Disability Officer and co founder of bumping a sex toy company for and by disabled people. He’s been featured on BBC CBC, Huffington Post, Mashable, Wall Street Journal, and the list goes on. Andrew is also the host of Disability After Dark, the podcast shining a bright light on disability stories, and has spoken all over the world about sex and disability. In our conversation, we discuss Andrew’s personal journey, and the work Bump’n is doing to dismantle ableism and broaden the accessibility of the sex-tech industry. Well, thank you, thank you so much for joining me today, your evening over in Toronto. And you know, me already, I’m Viv. But for the purpose of this podcast, we get our guests to do a visual description of themselves before we startup. So if you could describe what you look like, and the setting you’re in, that would be great. 

Andrew Gurza 01:05

Yeah I’m sitting in my downtown Toronto apartment, it is looking out over a foggy, cold, Toronto, this is winter here, and I am a person who uses a power wheelchair. I have a black headrest behind me and I’m wearing a white plain t shirt with a pink lanyard around my neck and a black microphone above my head so I can record this. And I’m the sexiest person in the room.

Viv Mullan 01:31

Oh, always without a doubt that goes without saying of course. Okay, so on that note, you’ve established you’re the sexiest person in the room always. But first off, you know, identity and language is such a powerful part, you as an individual and you in the in an advocacy and professional space. And you identify as a “Queer Cripple”. Can you speak to how you kind of landed on that on that title?

Andrew Gurza 01:54

Yeah, and I know that some people listening are like, whoa, but those words are, you know, full of history and full of some not so great history for both disabled people and queer people. And I use, I use that only to describe myself and I use quicker ball because it makes people in both those communities. And outside those communities. Pay attention to me when I reclaim it, and they pay attention to all of a sudden I’ve said two really bad words. And they’re like, What are you say? Why do you say that I better listen, what’s good, what, what’s happening, and they get really concerned that I set all these words. And then I talk about ableism. And I talk about queerness. And I talk about disability, and how I can’t get laid because people don’t talk to me because I’m in a wheelchair. And then they pay attention to the words for me are words that I’ve reclaimed words that people have called me all my life, in a derogatory sense, not so much queer, but cripple a lot. When I was younger, I heard it a lot in a derogatory sense. And I was like, why can’t we play with this? Why can’t this be something that we play with? But I would never give them or assign them to someone else? Without having a big conversation about why would I think it’s important. It’s only for me, it’s words that I reclaim for me,

Viv Mullan 03:04

Brilliant, and part of the work you’re doing is advocating for people to care about your sexual identity. It is interesting that people need that kind of awareness about why people with disabilities deserve sex. And to understand pleasure,

Andrew Gurza 03:20

I think I’ll just reframe what you’re saying, I don’t think we deserve sex. And I mean, anyone deserves sex, I think we deserve access to pleasure. Because when you say you deserve sex, then like, you know, you assume then that you deserve someone else’s body. No, I disagree with that. I think we deserve pleasure. And we deserve access to your own pleasure. But I think that’s what you’re trying to say. Anyway, I just want to clarify,

Viv Mullan 03:39

I love learning about how to phrase things, that is a huge learning in that it’s, it’s what you’re doing with Bump’n is you’re creating, you know, sex tech and toys that allow people access to pleasure. And I think that there’s so much awareness around this understanding, you know, me included of what that even means, from a human rights perspective.

Andrew Gurza 03:59

I mean, before I’d never thought about it, I’d never consider it. And really, the catalyst for that was my co founder and CEO, Heather was the reason that I even started doing it. And she was, we were on the beach in Bondi, I got to visit her, she lives in Sydney, Australia, and I got visited in 2018. And she had seen him film that I had done with the National Film Board of Canada, called Picture this. And in the film, I talk about how I can’t sell pleasure of the film got sent down to Australia for queer for Sydney pride. And so my mom and sister were there, and they watched the movie, and then I never thought my sister would see me talking about my masturbatory habits. And I talked about how I couldn’t sell pleasure. And then so I went down to visit her four months later, and she was like, I watched your movie. It was great. I heard you talk about how you can’t drink off. Tell me more about that. And I was like, Well, none of the toys on the market really worked for me and none of the toys like because of my dexterity, my hands. I can’t really use the small toys on the market. And so we talked some more about it. And she goes, well, there must be a toy for you isn’t there? And I said, well, not really. And so we talked some more, and we’re just standing there on the beach and she goes well, did you want to make one and at first we were both like, do we want to make a toy with our with a sex toy with our sibling? But then we took the question of, you know, do you have trouble? masturbating? Do the hand limitations to read it, and a bunch of people on Reddit said, Yeah, this is a problem. My experience 92% of people we spoke to in that survey said, I want a toy like this, where the hell is a toy like this for me. So he very quickly realised this wasn’t a one off endeavour to get Andrew masturbation aid. This was like, this could change the world. And so we, we went, and we cold emailed Dr. Judith Glover out of RMIT in Melbourne, who is like the leading, she has a PhD in sex toy design. So she’s like the leading person in the world. So we didn’t, we had no idea of this. And we just emailed her call and said, here’s who we are, here’s what we’re doing. Can we work with you? And she was like, I had been waiting for someone to come up with an idea like this. Yes, I’ll work with you. And so really, from there, she connected us to OTs, PTs, disabled community members to really get it going. And then you know, we came up with a bunch of designs, and the joystick is where we landed. But that’s kind of how it all came to be.

Viv Mullan 06:04

Can you explain the toy itself, it looks like?

Andrew Gurza 06:07

If you married your favourite body pillow, and a foam roller, and you put it together. So the top is designed for people with limited dexterity. So if you don’t have fine motor skills, you can grab on to a tiny button or a lever to like turn on a toy or turn off a toy. So the top is like a pillow, there’s a big soft pillow that you hug into, and you use your gross motor skills to hug into the top. And the bottom part is a purple peg that has a bunch of holes in it that are designed to hold your favourite toys. So your favourite wand, your favourite dildo, your favourite sleeve goes in there and its held in place. So you can then put it in position you like to snuggle.

Viv Mullan 06:50

A huge part of your work is sort of armouring up everyday with this this incredible vulnerability that you manage and you show. How do you go with managing that you’ve mentioned previously, you get a bit worried?

Andrew Gurza 07:03

Oh, I’m always worried because in our social environment, the way you hoped you’re supposed to look at disability is one of two ways is supposed to pity them and feel bad for them. And they’re supposed to become the sad pinball creatures, or you’re supposed to be a superhero and you’re supposed to like rise above your disability and all this bullshit that I don’t agree with. And I don’t think we talk enough about what what being disabled really feels like? What are the emotions that go behind, needing somebody to wipe your ass, needing someone to dress you needing someone to help you in the shower? Only being touched when somebody with a glove and who’s doing care touches you like what? What are the emotions behind that I don’t think in the disability space, we spend enough time exploring that vulnerability and really like tapping into Oh shit, that feels really hard. Let’s talk about that. And so that’s my favourite place to be is to be right there and in the tough spots, and bringing that to the masses on my social media platforms. And on the podcast, because I think disabled people again, they’re herded into these two categories. I think that there’s so much more grey than a pitiable creature or superhero, there’s somewhere there’s somewhere in between. And I want to be there,.

Viv Mullan 08:14

I kind of want want to know about what that feeling is being in the tiredness and exhaustion you feel from the ableism. Just within those two communities?

Andrew Gurza 08:23

It is exhausting. And because when you’re in the queer space, you have to present constantly that you’re viable, that you’re sexy that you deserve a space here, if you don’t meet a very specific part of maleness that is White says able bodied, muscular, if you don’t meet any of those standards, and I don’t meet any of them, then how do you present? How do you fit in those communities? If we talk about Section Disability, in the disability space, usually and no shade to these people, they’re all great. But usually, the community that we’re talking about is men with spinal cord injury, who’ve sustained an injury or women with spinal cord injury or non binary people with spinal cord injury, but we’re not really talking about queer people. So a lot of the times when I go into disabled spaces, I say I’m queer. other disabled people will say, Oh, no, but we you will find your girlfriend, don’t worry about it. You’re not really queer. You’re not gay, what are you talking about? And I’ll have to be like, No, I really am like, no. So it can be and it can be exhausting to present how sexy I am and how sexually viable I am and how hard it is to be with a disabled person. And I can do that day and night. I know how to tap into that narrative. But it’s exhausting to constantly be like, I’m desirable, I deserve to be here. Sometimes I want to be like, can someone just want to be here because they want to be here. And I love sex workers and I think they’re amazing. But if nothing sucks, the majority of my sexual life is paid for by me from the work I do, to have intimacy like, I love that it’s there and I’m so thankful I can access it, and it’s a huge privilege. I’m not dissuading that, but I wish somebody would be like, I want to spend the night with you, because I want to spend the night with you. And you don’t have to spend, you know, a couple $100 to make that happen. That part is really hard, knowing that a lot of my work in the sexual space is transactional. And it’s constantly me pushing how great it is. Those are the things that make me like, I’ll do it. If you tell me there’s a paycheck in the end, of course, I’ll do my job. But that doesn’t mean it’s not taxing on me to do it.

Viv Mullan 10:28

You’ve got quite a large social media following on various channels. And it’s a bold assumption. But I know that being on social media comes with a lot of pros and a lot of cons, which is people pretty harsh. And it kind of Amin on it, and how when you introduced a sex toy that is accessible, how did you go with navigating all the various responses? And did you get negative responses?

Andrew Gurza 10:55

We had a lot of positive feedback. And we had some negative feedback. People were like, well, this toy wouldn’t work for me, or why are you pricing it’s so high, or I can’t afford that. And we you know, we took that feedback, and we listened and we did our best to we had, you know a preorder where you could spend 99 US dollars and then pay the rest off later. Or and we’ve done a fun an orgasm campaign where we’ve asked non disabled folks to go to www dot get bump in.com and put down 5075 100 bucks to basically give us money so we can make more toys, so that somebody who couldn’t afford a toy, we can then gift it to them later and be like, Oh, you couldn’t afford this cool. We have some people that helped us get made. Here’s a toy. So we’ve done really everything we could to make it accessible. And yeah, people on social media were like, Ah, this is confusing me. What is it like work? I’m confused. So we realised we had to do a lot more education on teaching people what it was. And if people want to get upset on social media, go ahead. Like I’ve been, you know, call that run social media a bunch of times for stuff I’ve said. And it’s hard because for a lot of us in the disability community, that’s our community. And when they turn on you sometimes it’s like, whoa, what are we okay, how do I get out of here, but like, I’m too old now to really give a shit if you want to be upset, fine, if you want to have a conversation about it, and then like, work through it with me, let’s do that. But if you want to just be upset, I can stop you.

Viv Mullan 12:25

It’s incredible that you have that tenacity, and that that sort of thick skin, but also that you’re vulnerable about it

Andrew Gurza 12:32

I’m kind of pleased. And I’m honest, I’m kind of pleased that Twitter’s dying. I’m kind of really happy that Twitter’s kind of burning to the ground right now. Because not so much because I’m like, oh, Twitter deserves to die. I also realised that Twitter was a really big part of the disability community getting our stuff out there. But now it’s like, cool, we can all start fresh. Again, we don’t have to be beholden to this persona on social media, we can start again, and we can build our own platforms. And so when I found out it was dying, I was like, Cool, the pressures off I can just be myself know a little bit more good.

Viv Mullan 13:06

And have you thought about thinking about the new opportunities that are popping up in tech? Have you thought about what the metaverse might afford? The future of bumping?

Andrew Gurza 13:30

Wouldn’t it be cool to have a Bump’in sex-toy to turn on for you and like that could through VR that like the person you want to sleep with? Or look like somebody really hot? Wouldn’t it be? That’d be cool. You know, so there are so many applications of it. Like, I know, they’re working on VR porn right now. Like, I know that that’s a thing that’s been around for a while. And like, how cool would it be to have VR porn stories like that are connected to the disability community? Like, that’d be awesome. Again, all it would take is having some disabled folks in the room and being like, what tech would work for you? What do you need? What do you want? What wouldn’t make it work for you? Google got up and talked about their phone that did the things for voice recognition. I was so excited because I was like, wow, I would never have thought that a phone company would listen that hard. And do something like that. Like, that’s cool. All they need to be is like, what are the problems? How can we fix it? What do you need? And like, Google has money, Microsoft has money, they all have funds to make it go. So you can like they could change the world. All they have to do is listen, and I think that’s really what it boils down to just listen to us. We’ll tell you what we need. We’ll tell you what tech works and doesn’t work. Like what their toy people told us right away. Oh, yeah, that wouldn’t work for me or Oh, yeah, that would work or oh, here’s what I need. Like they told us. All we had to do is listen.

Viv Mullan 14:55

As the finishing question. What I like to ask people is to learn Leave our listeners with an insight or a remarkable insight about the space you’re working in. And that could be a piece of advice. It could be just something that you’d hope they’d leave this with a learning. I’ll pass it to you. But please share?

Andrew Gurza 15:13

All of us are going to be disabled one day, what are you going to want when you’re disabled? And what are you going to do when you’re disabled? Just think about those questions. Because it’s going to it’s going to come up faster than you realise. And you’re going to need support, you’re going to need help, you’re going to need care in a way that you didn’t, you weren’t ready for. Think about that and start having a conversation now. So that when it comes into your life, you’re not freaked out, you’re actually ready to talk about it. And then another time just thinking about another learning is like, can interrogate Why Does that scare you? Why does it Does it scare you? Because you can’t imagine that you’ll be a disabled person? Or does it scare you because you can imagine and that terrifies you like interrogate where that comes from? And really sit with yourself for a minute and be like, Why am I afraid of this? Let’s talk it out. Journal it, write it out, put it somewhere and really think about it. And then ask yourself the question again, and see what happens.

Viv Mullan 16:08

And you thank you so much for joining me.

Andrew Gurza 16:11

It was so great. Just such a pleasure to be here.

Viv Mullan 16:15

The full interview that guests can be found in the link below where you press play on this podcast, our show notes, make sure you subscribe or hit follow to not miss another remarkable insights episode.

DOWNLOAD A WORD VERSION OF THE TRANSCRIPT HERE.

Watch the full video recording of this podcast here.

Check out Andrew’s Instagram, Twitter, and website, as well as, the Bump’n linktr.ee

Introducing the Launcher inaugural cohort

Last month, we kicked off our newest program – Launcher, a pre-accelerator for entrepreneurs and teams making a difference in the lives of people with disability. The 22 selected early-stage startups have been taking part in weekly masterclasses and 1-on-1 mentoring sessions and have made great strides in their customer and product development in just 5 weeks. 

Hailing from Australia, North America, Africa, Asia and Europe, the teams have not only been learning from disability and startup founders and experts, but also testing their assumptions directly with customers and supporting one another with feedback and advice.

Launcher is made possible by the support of TPG Telecom Foundation and Cerebral Palsy Alliance, and the dedication of some of our amazing mentors, who time and again, give their time and expertise to support innovation in disability tech. 

You’ll get to hear from and connect with these startups at Launcher’s upcoming Customer Showcase, at 6 pm AEDT on the 1st of December. Register to attend the virtual event and perhaps, you too can make a mark as one of their early customers or supporters.

Now without further ado, we are proud to present the inaugural Launcher cohort!

  • accessilife – is an online marketplace and directory dedicated to helping you find everything you need for accessible living, in one place.
  • Aleph Engineering – produces affordable rehabilitative devices for children using eco-friendly local materials found in Ghana.
  • AtOne – targets anxiety and stress using immersive experiences in virtual reality and meditation to take people into a relaxed space faster and provides data reporting to measure and track mind fitness results.
  • Bugal – is a SaaS ecosystem that guides micro service providers through the process of compliantly getting to market, with powerful operational tools for efficiency, specific educational information for development and access to a market for growth.
  • dentUI – is developing an electric toothbrush designed specifically to help people with neurological conditions, such as Multiple Sclerosis or Parkinson’s Disease, who struggle to, or require help with, brushing their teeth. The solution will eradicate the manoeuvrability and control issues that people currently face whilst brushing their teeth.
  • DollarSign – is a learning platform to improve financial literacy in the Deaf community.
  • Focus Bear – is a habit and productivity app for neurodiverse individuals.
  • FutureTech Association Australia – is inspiring the neurodivergent minds of the future through STEAM (science, tech, engineering. arts & math) learning and social opportunities. 
  • Indii – develops technology to enhance the day-to-day lives of people with disabilities, improving accessibility at home and at work.
A banner of multiple images that depict diverse groups of people with various access needs
  • Lisnen – is an application to assist people with hearing loss to be aware of sounds calling for immediate attention.
  • myDRIVESCHOOL® – is a simulation game to teach people how to drive online.
  • Pluto – is a telehealth platform built for mental health professionals who work with children and young people.
  • PM4L – is a SaaS product developed using universal design principles that helps every student to do well, closing the gap of opportunity for success at school for children with learning disabilities and extra learning needs.
  • RooWalk – is empowering children with impaired mobility by developing an electrically powered walker.
  • Seymour Accessibility – is improving online learning by creating software to identify and assess inaccessible content.
  • SignHow – is a sign language learning tool that helps connect people regardless of their background and knowledge of sign languages. 
  • The Care Co – teaches kids aged 5-12 mental health skills in the classroom and beyond.
  • The Disability Cooperative – connects and powers the disability economy by providing a global marketplace of products and services for people with disability.
  • Thryv Mobility – is on a mission to create a flatter world.
  • Twende – combines the force of VR and social network to create opportunities for children with autism and their families to alleviate the stress of the unknown.
  • URATech – is an innovation centre for yoUR Assistive Technology needs. They provide customised solutions for end users and offer R&D services to partner organisations for hi-tech prototype and product development. 
  • vertere – is providing people with disabilities frictionless access to devices that afford autonomy over their sleep.
  • Virtetic – is creating game-based virtual reality therapeutics for people living with limb loss. 

Find out more and connect with the Launcher 2022 startups below:

Remarkable Insights: Charli Skinner

Transcript

Viv Mullan 00:03

When we think of what it takes to be a successful entrepreneur, we think of innovation, determination and ability to adapt to change, it should come at no surprise then that there has and continues to be a growing wealth of talent and disabled entrepreneurs. But how can we do better to harness this largely untapped talent pool? In this episode, we speak with advocate and founder Charlie Skinner, who’s on a mission to empower young adults who are chronically ill and disabled to design a radically inclusive world around us, Charlie shares her experience of acquiring a brain injury and how this expose the stark reality of inaccessible workplaces the hidden costs of disability, and also has taught her how we can do better to tap into the potential of disabled entrepreneurs.

Charli Skinner 00:43

Thank you so much for having me. I’m very excited to be here. Yeah, I’m Charlie, as people listening probably already know, I am a white woman with blonde hair. I’m sitting in my boat, actually, in London, you probably can’t even tell by the video, what it looks like. Because behind me is just a boring old white door with a couple of pictures hanging on the wall. That’s incredible.

Viv Mullan 01:07

On a boat in London, you said, Yes, I’m coming to visit.

Charli Skinner 01:12

Yeah, it’s a very peaceful and relaxing spot to live, when things are working. When they’re not, it’s not that easy

Viv Mullan 01:19

Now, I’d love to just sort of start off, if we could just jump into as little or as much as you’d like to share about your experience acquiring your disability sort of later in life, and how that sort of positioned you into this chapter of your life professionally. And personally.

Charli Skinner 01:35

Yeah, you’re right, I acquired my chronic illness, which is essentially a disabling set of chronic illnesses about just over four years ago. Now, actually. So it’s not even that long into my adult life. But definitely at a time when it was in my late 20s, I was in a kind of position in my career where, you know, thinking about what’s next. So, you know, pretty stable in my job and had built up a solid amount of skills and figured out, you know, a little bit of the groove of where I was at. And I actually sustained a head injury, which was the catalyst for a whole series of events over the last four to five years, which essentially have left me with long term health conditions that I will be I live with now and have to manage and I will be we’ll be living with for the rest of my life. So it’s, it’s been quite the process in the sense that it was, it was a really, really big shift in my life, that organisation that I have found in now, partly comes from me being that individual who was looking for all of this type of support and support in accessing things like work, accessing the outdoors, accessing, even just social environments, with my friends, accessing health care, all that kind of stuff that I basically spent, you know, years and still do spend years trying to navigate my way through and advocate my work my way through. And then the other side of it is the flip side of, you know, financial stability, which is a huge, huge challenge for people who are chronically ill and disabled. And yeah, the price tag, I think it was some statistics show that it’s something like on average, more than 500 pounds a month for a disabled person to live with the extra accommodations that they need.

Viv Mullan 03:17

And as you navigated that journey of advocating for yourself, did your relationship with technology change, because you weren’t getting that support from the systems?

Charli Skinner 03:26

Tech is actually a really interesting one. Because it’s something that initially for me, as an individual, I found really inaccessible because of my brain issues. And because something that I relied on, like my phone, or my computer screen, became inaccessible to me because of visual sort of interference and noise interference. And those kinds of things that my brain just you know, was essentially got to a place of finding it really difficult to process those kinds of things. So initially, I struggled with that, because I didn’t know how to navigate tech in an accessible way. I only knew how to navigate tech in the way that I was used to, for example, you know, texting on WhatsApp, or FaceTime video call. So those kinds of things that I was really used to, I tried to continue to do and I tried to use tech to keep me connected because I was so isolated, but I wasn’t using it in a way that works for me, because I didn’t know what was available to me from a tech point of view, that would make my life a lot easier. So even now, even though now I can easily go on a FaceTime or video call. I mean, I’m on a video call right now. I now I always use dictation on my phone to write out like text messages and those kinds of things. It’s almost mind blowing to think that such a simple tool before I didn’t use or rely on, and how transformative that was, for me that small simple tool like that. And then of course, like as you go along, the more years you spend and the more tips you get from people about different sort of tech things that you can use to facilitate the way you access people on the other side of whatever that tech thing is was one huge thing around you know, not being socially isolated

Viv Mullan 04:59

And before we dive into the world of Soda, I’m still learning about this concept of access intimacy. Could you explain that concept to people who don’t know what it is?

Charli Skinner 05:11

Access intimacy is a phrase that’s coined by me, I’m Angus, who is an absolutely brilliant disability activist, disability justice activist, she does a lot of work in this space of access centred work. So access intimacy is, for example, when you go to an employer, they’ve already done some, some research, and they’re coming to you with you know, we’ve thought we’ve tried to understand your condition, we’ve taken also what you have, you know, what you’ve put out there already, and what you told us already, and we have, like, proactively tried to address your access issues. It’s the same as you know, a friend, when they asked you to hang out in the evening, you know, can we check the venue is, okay, in terms of is there going to be loud live music, there was something that I would I would stop me from going into a venue, it wouldn’t be that I couldn’t, for example, access that table itself, because I could walk up to the table. But if I sat down at the table, and I couldn’t hear what my friend was saying, and that would make my brain, you know, go into a process of shutdown, then that’s not accessible for me, and the fact that a friend who, you know, had addressed my access needs, proactively is another example of how access intimacy is as a concept, and essentially recognises that there is a lot around us that allies can do to support our access needs. And that when they’re doing that, they’re recognising that that’s allowing us to be more of to live our lives more fully. And for us to be more of a full person without having to, I won’t go back to that sort of explaining yourself and advocating for yourself concept, which, which basically, it kind of recognises that everyone who is chronically ill, and disabled is very tired of having to do that for themselves. So when you’ve got allies around you supporting you with access intimacy, then that’s the dream

Viv Mullan 06:58

Is this your solution to this? Have you created this brilliant organisation, as a way to, to solve this problem of constantly being told no, by people when it comes to accommodations and design? So two questions, is soda your solution? And what is soda?

Charli Skinner 07:19

Yeah, I would say soda is definitely our solution. But it’s born of a recognition that there is a whole group of people in our society who really want to reach their potential, who are innovative, who have got that hustle, and who want to make stuff happen, but aren’t being given the tools to do it. And we, I’ll describe what Soda is because that will help place it all. Soda is an organisation that is building a community of young people with chronic illness and disability. So one of those people would be someone like me, we’re working with 18 to 35 year olds recognising that there’s a there’s a little bit of a gap, particularly in healthcare, and also just a kind of societal, I think, assumption that when you’re have that sort of age, it’s your prime time and you know, you’re good to go, especially when it’s an invisible illness, because the classical sort of term of your, Oh, you’re too young to be Ill type of thing is a huge issue. So we recognise that there’s a group of people who are navigating these types of issues. And so we have this community of people that were brought together, the ambition is that they can firstly help support one another. And looking at the examples that I raised earlier around, you know, these types of communities don’t really exist apart from in particular disease groups, there are a lot of, you know, if you’ve got a particular condition, there are communities that are there for you. But there aren’t necessarily communities that are based around access and around access needs, which often tend to be universal, even if you have completely different conduct conditions. So one of the aims of soda is to build this community of support of other people, you know, other people like me, who I can identify with, who can help point me to resources, give me advice, those types of things, if I’m also a member of the community. And then the other kind of the really vital thing for us is we want to actually also make that change. We want organisations to be giving people access, and we want accommodations to be the bottom line. And we want everything to be above and beyond. And so we want to use our community expertise to go to organisations to work with them to make their services more accessible. So for example, when you’re talking about things like the healthcare system, employers who are going through processes of employment, or who are dealing with current employees who might be experiencing access or accommodation issues, public spaces, restaurants, you know, service type areas like that, and then there’s a whole other space around products and accessible product and that’s where, you know, tech also comes into the space I think of a service under product but there’s a there’s a lot going on these days around, making making sure tech is accessible and triple A and all those kinds of things. So, we also you know, I’m working in that in that type of space as well, getting our community to provide their expert insight on how, yeah, how products and services can be more accessible.

Viv Mullan 10:11

With Soda do you have much of a relationship with the startup space? Are you working more with, with sort of bigger companies? Where do you want to make noise in both? I suppose I’m saying?

Charli Skinner 10:21

Yeah, interesting question. I mean, I think making noise everywhere is the goal. But I want to make noise everywhere. Yeah, literally everywhere. So massive organisations like we need to go in and change it all from the inside. But it’s interesting, you asked about the startup space, because the startup space is, as well as being a space of exciting new ideas, innovation, of course, highly, highly creative space, it’s also a space that is interested and wants to make social impact as well. And I think there’s a recognition that a startup organisation can because you can pivot and you can, you know, be agile and aligned to what your needs are, but also what’s going on around you much more easily than a big organisation can that has its all of its systems entrenched, there’s a lot of change that can be made, not only because startups are trying to do that already. But also because you can get in and you know, I’ve had some really interesting conversations with your colleagues at remarkable around, if you get in early enough to make that change, and get the voices heard at the beginning around how something can be designed in the startup world, then you are golden, because you’re already thinking ahead of the curve, your, your organisation may end up, you know, a billion dollar company. And it may end up being one of those massive ones with a huge system one day, but if you’ve integrated that process, from the start of listening to voices of the people who are going to be using your product or service, or whatever it is, then that’s a really valuable space for us to be working in. So we definitely have one client base, which is this public service space, which is a space, which is there’s always going to be work to be done there. It’s just a never ending space of work in, you know, the health care system and employment systems and social care systems. And we love working in that space. Because it’s, yeah, there’s just there’s a lot of traction as constantly more to be done. But we’re also Yeah, actually, one of our kind of next ambitions is to find an organisation that is already already bought onto the idea, especially of inclusion and diversity, that also also considers disability because one of the biggest issues of the kind of diversity and inclusion movement is that it often forgets, but there are other really important intersections like disabilities, and finding organisations that are to some extent already bought on but don’t know how to actually implement. And that’s where we want to get in and make that change. And once you’ve kind of proven yourself in that space, I think it’s a lot easier to then go into the big dogs.

Viv Mullan 12:53

And I think there’s there’s also a conversation that needs to be had that when we talk about the startup space, there is this sort of hustle culture that’s encouraged. And historically, that hasn’t been a very balanced approach. And it’s been very much work at non stop, never stop thinking about it. And I refuse to encourage that, because I think especially in this space, we have to be mindful of the fact that if we’re not encouraging balance and health first, then we’re sort of backpedalling because mental health conditions, invisible disabilities, all of this chronic illnesses rely on this real and disabilities in general. But also just the human condition relies on prioritising your health and your happiness first and foremost. And I think that is sort of critical to the next wave of startups that I hope that we can start encouraging and how does that lend itself to your experience as you’ve navigated building soda?

Charli Skinner 13:45

Yeah, yeah, it’s, it’s, it’s absolutely central to it. And Alex, Ollie and I are constantly going through this process of iteration of ways of working because the company is not going to survive if the co founders aren’t looking after themselves. And particularly if we’re but we’re, you know, we’re building a business around one of us has chronic illness that is disabling it, you know, it sends me off into a crash every so often, and I have to stop working it. That’s literally just how it is. And it, you know, to some extent, will always be like that. Some stages of life, it’s going to be worse and other stages, it’s going to be more manageable. You know, Alex deals with neurodiversity as well. So there’s access issues around neurodiversity that are really important for us to implement in the way that we work on a daily basis. And you know, Olli has childcare responsibilities, like these are the types of things that are again, it’s an access issue. We’re not talking about chronic illness or disability, but we’re talking about access still and the types of things that benefit me as someone who’s chronically ill to make sure that my energy is saved like my working hours being quite flexible. You know, I work part time I don’t work full time and I won’t probably will never work full time again. That is partly because of my illness, but it’s also because actually I’ve made the proactive choice to live, you know, a more balanced life, knowing that my business is going to probably benefit from it. And it’s a really important thing around the ethos of the way we want to also grow. So a big principle of what we want to do when we grow is, is prioritise hiring disabled people recognising that disabled people are 15% of the population. And yeah, we, you know, we really want to have that at the centre of our ethos around how we work and how we hire people, it’s going to be centrally disabled people. I guess the last thing I want to say around this sort of area of access, particularly in the startup space and founding space, is that yeah, you’re right. It’s not a very accessible space. The Hustle culture comes with its fun, kind of like, Oh, I love the idea of being a hustler. But it also which we want to, you know, we want the good parts of being a hustler. But we don’t want the bad parts of being a hustler, because they Yeah, they don’t work for. And, you know, even just things like access to funding and the type of accelerator programmes that actually aren’t designed to have a curriculum or a support structure or mentor structure that is, is accessible, it might be full time, for example, like that is not going to be accessible for many disabled people, you know, funding opportunities might have specific deadlines that aren’t flexible, again, that might not be accessible to someone who may be dealing with an acute or chronic health issue at that moment. And building in mechanisms that allow people to navigate things like accelerator programmes, or funding programmes in the startup space, and also even just to get hired into a startup to see if they like the taste of the experience. And then maybe they want to launch off and do their own thing. Those kinds of mechanisms are vital for getting that you know, all of these amazing brains into fun and creative employment really.

Viv Mullan 16:46

And we tend to finish these conversations with asking brilliant guests to share a remarkable insight. And that sort of stands for some sort of insight into your own experience that you would like to share or a piece of advice moving forward for people looking at doing co design working with people like soda. So I’ll pass the mic to you. For you to share whatever insight you feel.

Charli Skinner 17:13

I feel like there’s a kind of community insight and a personal insight, I think that my nugget of insight around my experience with this community is that the tiniest, tiniest thing around listening to someone can make the biggest difference to the way that individual feels acknowledged and recognised and empowered in a community. It is vital to the way that for example, our business is going to work because we want people who don’t get listened to to be listened to. And I know what it feels like to have even just one person in your you know, even one person in four years, who says I understand what you’re going through, and we’re going to do something about it. Hearing those words or something to that effect is enough to give someone the motivation to Yeah, want to be involved in a change process and provide that expert expert insight. And we really need to see people as experts and that’s my I think that’s my piece of insight when it comes to anything like CO design. So yeah, that’s my piece of insight.

Viv Mullan 18:20

Thank you so much for joining me today. It’s been such a pleasure and honour to talk to

Charli Skinner 18:26

Thank you. Thank you so much for having me. I’ve loved it. I really enjoyed it.

Viv Mullan 18:31

The full interview with our guests can be found in the link below where you press play on this podcast our show notes, make sure you subscribe or hit follow to not miss another remarkable insights episode.

 

DOWNLOAD A WORD VERSION OF THE TRANSCRIPT HERE.

Watch the full video recording of this podcast here.

Connect with Charli Skinner on LinkedIn and learn more about Soda.

First-ever Remarkable Tech Summit

It’s hard to find the words to accurately describe the magic of our first-ever Remarkable Tech Summit, but we are going to give it our best attempt in this blog post.

To make it easier, let’s start with a few questions…

What is the Remarkable Tech Summit? 

From November 2-4, 2022 we welcomed over 90 guests to the first-ever Remarkable Tech Summit in San Francisco.

This event was made possible by Cerebral Palsy Alliance and the Cerebral Palsy Alliance Research Foundation, and was a gathering of innovators, entrepreneurs, corporate stakeholders, investors, researchers, disability advocates, partners and friends in our ecosystem for a truly Remarkable experience.

This two-day summit was jam-packed with panels, guest speakers and group discussions designed to connect, celebrate and grow the emerging Disability Tech ecosystem.

A man with fair skin and dark hair is seated at a table smiling and wearing a light blue collared shirt and purple lanyard around his neck.
Man with dark brown hair and wearing a long black shirt is standing holding a Mac laptop and talking to a man seated at a table wearing dark glasses, a light blue collared shirt and a purple lanyard around his neck.
A woman wearing a black pant suit and a man wearing a checkered business jacket and dark jeans are seated on wooden chairs presenting a talk on a stage. Behind them is a pink screen that includes the text 'Fireside chat with Regina Kline and Jim Sorenson'
Ariel view photo of an outdoor terrace that has people seated around several tables eating lunch on a sunny day.
Two men are standing and talking to each other in front of a stall that is promoting an affordable wheelchair product called 'Participant Assistive Products'.

What was the goal of the Summit? 

The goal of the Summit was to amplify the voices of disabled innovators, create connections, explore challenges, set commitments, and actively support one another to drive change. It was incredible to see the joint commitment from our guests to these goals, which we are proud to say we reached by the end of our two days together.

Below are a few powerful quotes from our speakers that capture this energy.

Person with fair skin and short blonde hair wearing red lipstick

“Humans are the most important technology we can invest in…when we talk about investing in tech, we’re investing in humanity.”

Minnie Baragwanath, Chief Possibility Officer, Global Center of Possibility
Person with fair skin and short brown hair wearing glasses

“What the Remarkable Tech Summit did was offer another dimension to the very notion of the burgeoning Disability Economy. They have shown the poetry and prose of this economy are more than just about great ideas, innovative tech, or even the potential of the capital markets, but the idea that the congregation of this community’s impact can profoundly affect society and may have a broader appeal than one can imagine…”

Jonathan Kaufman, President, J Kaufman Consulting
Person wearing a light top with a necklace

“At the summit, I felt truly elevated and acknowledged, and I trust that more of this will only continue. Because what also took shape at the summit was a collective understanding that we still have a lot of work to do — but we’re all up for the challenge to set a precedent for more accessible, more affordable, and more inclusive tech not only for, but with disabled people.”

Katy Gaastra, Founder, Cerebral Palsy Strong & Digital Engagement Manager, CPARF

What were some of the highlights?

In addition to a stellar lineup of speakers, we were also thrilled to be able to celebrate some exciting announcements including:

The Summit included a startup pitch competition, which was an opportunity for selected founders to pitch their idea. We were excited to announce the winner of the judges grand prize of one prestigious shark hat to Parag Gad, CEO and Co-Founder of SpineX.

We launched applications for our 2023 Remarkable Accelerator (#RA23) global program, which will have programs run from Australia and the US!

Our friend, actor and advocate RJ Mitte joined us to celebrate the Remarkable Tech Summit and also shared a message about our accelerator.

We presented our plans* for our 2023 Design-athon, which has been inspired by the winner of this year’s World CP Day challenge called ‘Millions of Reasons’!

*2023 Design-athon plans will be published on our website soon.

What were some of the outcomes?

It was incredible to see a group of disabled and non-disabled leaders from across the world, come together – many meeting for the first time. This web of connections will continue to bear fruit in months and years to come. 

A priority of this summit was to ensure that everyone who attended was able to leave with learnings and challenges to help guide and support their work in the Disability Tech space. To ensure this, we hosted group discussions and brainstorms where our guests provided insight into what was still needed in the Disability Tech space. Some of the broad areas that were raised included: 

  • Advancing the employment rate of people with disabilities in leadership roles 
  • Highlighting and eliminating ableism from policy and procedure within all industries 
  • Increasing the investment and capital available to disability-led startups
  • Recognising the role that disabled hackers play everyday in making the world work for them when it hasn’t been designed to account for their needs
  • Building capability and education so that accessibility is built in from the beginning in products and services. 
  • Ensuring that design is being done WITH the community not FOR them. Learn more about this in a powerful blog post by Minnie.
  • The need for the ecosystem builders to create further connections between investors, researchers, corporate allies, founders and the disability sector.

What are the next steps? 

This year’s Summit was the first of what will hopefully be many more where we will convene global leaders who are building the disability tech ecosystem. We are always looking for collaborators, partners, other champions we can work with to keep making progress. We will soon release a report covering some of the challenges of emerging structural areas that need work for the benefit of the ecosystem. If you’d like to stay in touch, please get in contact with us on hello@remarkable.org

Remarkable Insights: Bernard Chiira

Transcript

[00:00 – 00:25]

Remarkable acknowledges the traditional custodians of the lands on which we are gathered today, and we pay respects to the elders past, present and emerging for they hold the traditions, the culture and hopes for the Aboriginal and Torres Strait Islander peoples across the nation. And we would also like to acknowledge the advocates who played a role in advancing the rights of people with disabilities, leading to addressing the inequalities faced by people with disabilities.

Did you know that more than 1 billion people globally are living with some form of disability, and that 80% of this population live in low and middle income countries, and that only one in 10 of those have access to the assistive technology they need. In the following episode, we speak with Bernard Chiira, founder of Africa’s first Assistive Technology Accelerator based in Nairobi, Kenya, to talk about his life growing up with scoliosis and his mission to raise the business profile of investing in assistive tech startups in Africa. We discussed the accessibility, equity and affordability of assistive technology in Africa, and how regulation must meet the needs of innovation in order to get the technology into the hands of those who need it most. Hello, Bernard, it’s so lovely to have you here on the Remarkable Insights podcast. Before we jump in, we’d like to ask our guests, if you wouldn’t mind, could you do a visual description of who you are as a person and the setting that you’re in?

Bernard Chiira 00:58

Yeah, I will try. So here it goes. So I, African man, black hair, brown skin, and wearing a pink shirt. And I’m joining you all the way from Nairobi.

Viv Mullan 01:13

Brilliant. Thank you so much Bernard, I would love to just start off with if you could just give a bit of an introduction to who you are, and how you know where you grew up in the world and how that led you to the current position you are in now with your career

Bernard Chiira 01:28

So I was born and raised in Kenya. And I remember the story goes because I was too small a country. Remember that when I was two weeks old, I was shipped back to the hospital. And that’s because I couldn’t stop crying. And my parents were trying to figure out why. So at the age of two weeks, I was diagnosed with brittle bone disease. And my childhood was one in and out of hospital. So at some point, when we were like three, four years old, we moved to the city mainly to try and access better health care. So my entire family moved, I come from a relatively big family seven in total. And I do have other siblings in my family who also had a physical disability. So I would say that disability and inclusion and diversity has been a feature in my family, because some of us had a disability and some didn’t. And we basically learned how to thrive together and support each other. So my mama was a farmer. And my dad used to work in the bank. And I think it was alive when having a disability and living in the village was not easy, especially for my mom, because she had kids, multiple kids with disabilities. So from a societal perspective, of course, the stigma was quite a thing. You know, in the African setting, culturally, things like disability are not, you know, well received. So people kind of resolve to Yeah, why does she have kids with disabilities? What did she do? But I think the most powerful thing I would say is basically the power of love and family because most families are split by disability in Africa. Like, I think my parents are my biggest heroes, because they’re my mentors. They’re my support system. And that was very important at that age, giving a child the confidence that look, you can make it and and giving you an equal opportunity like other kids. I think that’s all that’s needed. You know, back in 2019, I joined the Global Disability Innovation hub to launch innovate now in Kenya, which is Africa, squats, assistive tech accelerator, and we’ve been running it now for three and a half years. And kind of bringing the mindset of technology and innovation in the disability world, which was something quite new on this side of the world.

Viv Mullan 04:12

Yeah, your parents sound like pretty incredible people. That kind of speaks to where I’d love to take this conversation to next, which is when we look at the climate of assistive technology and these conversations around accessibility and affordability. We can kind of see, 80% of the world’s population of people living with disability come from low to middle income countries, I believe is sort of some of the latest statistics as someone who grew up in a rural part of of Africa and then had to move to the city just to access more of the support. How does that sort of statistic feel, as someone who’s been through your journey and as someone that is pioneering assistive technology in Africa

Bernard Chiira 04:59

Unlike In the West, where some of the leading factors are driving factors for disabilities and aging population, here you have, most of the people affected by disabilities are young people whose futures need to be secured, literally. So, for me, that feels like, that’s why we can’t, you know, be business as usual, in matters of disability, and we have to address matters disability in a very sustainable way. And I believe in this nexus of capital meeting, philanthropy and the responsibility of government, everyone working in unison, to play their role so that we can give access to pass and see disabilities across many things. You know, assistive technology, of course, is one of the major gaps because only one in 10 have access. And for me, coming from a background of technology, and entrepreneurship, I have had the privilege of leading accelerators and incubators that produce success, and great companies in other sectors like energy education. And I think when you know, at the nexus of technology, and entrepreneurship, you can start doing amazing things in addressing the gaps we have in assistive tech. And for me, this was really exciting to live my career in university where I was leading an incubator to try this, and three and a half years later, and not only I will try this, we’ve actually been able to validate that we actually need to do more to secure the assistive technology products and services in Africa by supporting small businesses, or startups that literally scale their services across the continent. And we are beginning to see that now. So for me, it’s very exciting to be contributing in a very meaningful way, in an area that is so untapped and to unlock new possibilities. Yeah, for the people in Africa and for the world.

Viv Mullan 07:17

Can you talk about some of the assistive technology that you’ve been able to support and how you discovered this technology that is emerging out of Africa?

Bernard Chiira 07:25

Sure. So I’ll start with frugal innovation. So imagine this, one of the biggest challenges we have in most emerging markets, and in most developing countries, is this idea of accessible mobility or transportation, public transport. So most of you know, our countries in Africa did not build accessible cities. And in that case, it means that most of our transport is not accessible. So it’s very difficult for wheelchair users to move around, even in short distances. So back in 2019, when we took in our first cohort, I remember we took in an entrepreneur, his name is Lincoln, and Lincoln, I discovered Lincoln in the most exciting way through a YouTube video. And it was a video that was shot by the BBC. And I saw this young man give a story about coming to Nairobi to look for job opportunities. And he was a self taught engineer, and he learnt a lot of his engineering on YouTube auction. So Lincoln comes to Nairobi, and he had this experience where he sees disabled people not being able to access transport, it’s raining, this person is being rained on. And he said to himself, you know, I’ve been building drones and other electric vehicles, why not build an accessible tricycle that had long power range that will take someone from, you know, for short distances where they don’t need to build a vehicle. So he actually went and built what he now calls the little cell tricycle. So it’s a fully motorised Price Cycle built out of initially out of 80 to 90% recycled materials. And the most amazing thing is how he went about to build the battery, which is the, you know, the most important thing in a motorised vehicle and he went around and started collecting old laptop batteries, you know, from Jenkins from offices, and he would go and take them apart and rebuild them, calibrate them and build an entirely new battery. That power was an electric tricycle, and he would go and get, you know, an office chair you go and get, he literally built his fast tricycle like this And when he did a demo of it, I mean, it was truly amazing because you see entrepreneurs, most of the time they face a double challenge, you don’t have the capital to start what you want. And at the same time for you to show potential and be investable, you need to show what’s built in what you have solved. And this is a type of innovation that in Africa is very common, where we work with what we have, and we solve problems. And today lean sell, lean sell technology is one of the leading motorised tricycle, accessible tricycle products, and they have literally almost sold hundreds of this price cycles. And the most amazing thing is they cut down the costs by almost 50%. And they want to do it even more, if they reach even able to manufacture at scale. Wow. So when we found that this was very impressive for us, we took him in, and we are seeing this type of innovation having immediate impact. You see, assistive technology is one of those things, where you don’t really have to wait for 10 years to see the impact. The new part is immediate, because now you have a lady, one of his first customers is a lady that sells vegetables in the streets, and she’s able to move in very difficult terrains. And one of her stories is now beyond going to business he’s able to go to church and interact more in our community.

Viv Mullan 11:35

And with the startups that you’re supporting with Innovate Now, are you seeing these startups largely driven by people with disability? Or is it allies and people that work in this space?

Bernard Chiira 11:47

That’s a brilliant question. And I think most of these startups that have made significant steps for the progress in our accelerators have actually been led by disabled entrepreneurs, or teams that are very diverse in terms of their employees, they have, you know, disabled entrepreneurs, or even at the leadership and strategic level at the board level, they have disabled advisors. And I think we can’t, you know, downplay the significance of this, because it goes back to the, you know, the principle about inclusion, and you cannot include, without involving persons with disabilities, I think they say nothing about us without us. But for me, it’s not to say that if you don’t have a disability, you cannot solve for disability. And not at all, I think it’s how deep is your understanding of the root cause of the problems and the what’s your, what’s your driving force, and I think having people with disabilities are the centre of this is one of the most powerful driving forces. And he’s also one thing I’ve come to learn is about what you call the allies or you know, the peripheral of disability, when you look at the Global Disability opportunity, or the last opportunity to date, nearly $2 trillion. And this is by those with disabilities and their families or other allies. And I think we have to look at this, as you know, an opportunity that needs to be unlocked, and a way to elevate disability not just as a good inclusion or diversity theme, but as a real area of opportunity as a real life changing opportunity and a driver for prosperity, even in business. And I think companies that have realised this are making significant efforts and investments in driving inclusion of persons with disabilities in business. And I think business is one of the biggest forces for good, that can make a significant difference. And I think we need more of them to kind of say, Okay, how do we support other market driven solutions coming out of accelerators, I think we need more corporate involvement in supporting disability innovation.

Viv Mullan 14:27

And it’s so brilliant to see around the world. There’s been these people driving this change when it comes to assistive technology, with remarkable with innovate now, you know, and with the initiatives that Gina has just helped launch with moonshot and the inclusive innovation network, seeing all of these communities come together, and seeing that sort of collaboration. Just unifying and igniting this real movement is so exciting, because there’s no real competitors. It’s the same goal which is just a more inclusive and accessible world. So thank you for the work you’re doing. And we like to wrap these conversations up by providing our guests with a remarkable insight. So something that you’d like to share about your hopes for the future or some advice that they can take away from this conversation

Bernard Chiira 15:15

Yeah, thanks, we I think we are at a very interesting time in history, where the power of technology, the power of connectedness, the farmer, the internet, is really connecting all the right people across the world. And it’s no longer lonely to be working in this sector. And we are beginning to see possibilities. And to believe that, you know, we can drive this change in a more sustainable way. So my, my dreams for the future, my hope for the future is that when we invest in disability inclusion when we invest in startups, in disabled leaders in disabled entrepreneurs, we are not just investing. For today, we are investing for the future, we are going to create a more sustainable world, we’re going to create a more inclusive world. And I think we are taking the right steps. But we have to make those decisions today so that the future can be better. So invest in disabled leaders, invest in disabled entrepreneurs, and will create the world that you want to see in future.

Viv Mullan 16:24

Thank you so much, Bernard. It’s been such a pleasure to have you here for this Remarkable Insights conversation.

Bernard Chiira 16:30

Thank you very much, it’s a pleasure.

Viv Mullan 16:33

The full interview with our guests can be found in the link below where you press play on this podcast, our show notes, make sure you subscribe or hit follow to not miss another Remarkable Insights episode.

DOWNLOAD A WORD VERSION OF THE TRANSCRIPT HERE.

Watch the full video recording of this podcast here.

Connect with Bernard Chiira on LinkedIn and learn more about Innovate Now.

Remarkable Insights: Professor Sébastien Jodoin

Transcript

[00:00 – 00:25]

Remarkable acknowledges the traditional custodians of the lands on which we are gathered today, and we pay respects to the elders past, present and emerging for they hold the traditions, the culture and hopes for the Aboriginal and Torres Strait Islander peoples across the nation. And we would also like to acknowledge the advocates who played a role in advancing the rights of people with disabilities, leading to addressing the inequalities faced by people with disabilities.

[00:25 – 01:03] Viv

When you think of climate change do you think of the disability community? In the following episode we are joined by Professor Sébastien Jodoin, director of the Disability-Inclusive Climate Action Research Programme to talk about how his life in academia and law, combined with his experience of Multiple sclerosis has inspired his passion for researching the intersection between climate change and disability. We’ll discuss why people with disabilities aren’t considered in climate change justice conversations, and why this needs to change as we look to the future of a truly innovative, accessible and inclusive approach to tackling climate change, from both a tech and policy perspective.

[01:03 – 01:16] Viv

So lovely to have you with us today to start these conversations. What we like to do because this will also be a video podcast is invite our guests to do a visual description of themselves.

[01:16 – 01:30] Sébastien

Sure, I’m a white man. I have no hair. I’ve just turned 40 and I am standing in my living room because it’s in the evening here in Montreal, so I’m home.

[01:31 – 01:54] Viv

Again a big thanks for coming on the show and you’ve got a pretty impressive resume and career to date and I’m not even gonna try and summarize all the things you’ve done but if you wouldn’t mind giving that a go and just sharing a bit about what it is that you currently do and and if you’re comfortable how exactly that’s been shaped by your experience of MS?

[01:54 – 04:27] Sébastien

I’m a law professor at McGill University in Canada. Prior to that I worked as a human rights lawyer and was also active in the field of climate change. I started working on disability and climate change a few years ago and that was really tied to my experience of having multiple sclerosis. So I was diagnosed with MS in October 2015 and I had pretty aggressive case in terms of the onset so I was lucky actually because I was diagnosed right away in the emergency room in the hospital and I remember after they gave me the diagnosis I turned to my wife and the first thing I said was okay this is going to be a beautiful challenge and I had no idea what that meant I didn’t know anything about this illness or how to manage it but I had this idea of like knowing who I am, I was like all right I’m gonna put my all everything into this I’ll end up working on health care or disability and whatever so that’s that was sort of my my early sort of bounce back internal resilience in that in that context and in the summer I realized that I was basically intolerant to heat so 65 of people with Ms will have these various symptoms when it’s really hot outside in fact they used to diagnose people with MS by putting them in hot baths to see would trigger some of those symptoms so basically before MRIs that’s what they did they used hot baths and what it does is it triggers a number of things can make you more tired it can blur your vision and you can also feel these like tiny little electric shocks along the side of your like back of your head along your spine they’re not like painful but they’re a sign of like your nervous system is not you know functioning properly. So anyway I’m sort of in July in Montreal where it’s very hot and humid and you can describe it as a hot bath and I’m like thinking to myself okay so this problem that I’ve been working on for my whole adult life climate change I suddenly am affected by it in a different way than others and basically from there it was just much easier to start thinking about how I could bring my work work to disabling climate change but for the most part I ended up sort of moving my research towards the field of disability and climate change.

[04:28 – 04:44] Viv

When we look at climate change and we hear numbers about slight increases and decreases to the temperature of the climate and the atmosphere, although they’re smaller it might be one degree up one degree down. What is the impact of just that one degree when we’re talking about disability?

[04:45 – 07:02] Sébastien

I mean the one degree is sort of a global average and really what it represents actually and what it leads to is it’s actually that you’ll have these severe weather events right you’ll have more cyclones they’ll be more powerful you’ll have more droughts you’ll have more heat waves the way in which people with disabilities are affected by sensitivity so like what in your body might you make you more sensitive to different types of impacts people with schizophrenia are very heat intolerant and they typically are the people who die at the highest rate actually in heat waves around the world so they have actually the highest death rate per proportion of what their share of the population is and then finally there’s a deck of capacity that’s the personal connections the family the community your access to Services the assets that you have all of the things that you need to cope with climate impacts and here what we can see is number one that sort of people with disabilities face a number of barriers in society and that diminishes through adaptive capacity so if you’re you know living in poverty you might have less access to say air conditioning in the context of a heat wave but I think most importantly and most distressing what we see actually is a failure on the part of governments to have accessible responses to ensure that people with disabilities are resilient in the context of impacts of climate change so if I’m thinking of something in Australia that we saw where the bush fires last year and there were reports of a lack of evacuation to move people who were wheelchair users or who had like complex medical needs like requiring continuous medical equipment there was nothing in place to move these people the shelters were inaccessible ultimately the vulnerability of people with disabilities to climate impacts is not something that’s natural it’s actually the result of failure to include them in these policies these programs and a broader broader failure to address all the barriers that they face in society.

[07:02 – 07:07] Viv

What are some of the exciting things coming out of this space that Disability Advocates are driving?

[06:39 – 08:56] Sébastien

Right I would say the the people on the ground who are really pushing for basically inclusive responses are the first people that were sort of that when I was reaching out to people in the disability community these were the first people who were like yeah okay I get it like we’ve been working on this but from a different angle but then on the flip side right we’re talking about like how do you cope with climate risks? On the flip side of this, when we’re looking at efforts to actually reduce carbon emissions and make our societies more sustainable there’s a lot of experience and know-how in the disability Community about how to do this in an accessible way. So I actually always like to say that the disability activists that have been pushing for like transit systems to be accessible are climate activists they perhaps sometimes don’t think of themselves in this way but I think if you’re trying to make it easier for people to say to use a Transit System you’re making it possible to reduce our reliance on cars that run on fossil fuels. When we’re designing these systems in an accessible way it not only benefits wheelchair users it benefits a huge group of users right if you are for instance installing elevators in your subway system this will benefit the elderly which are a growing share of the population. In the west it will benefit people who maybe are injured that week. It will make it way easier for parents with strollers to use that system. So anytime that you’re making things more accessible for a group based perhaps on their impairments and their experience with disability you’re actually also creating all sorts of opportunities for other users to benefit from those designs.

[08:56 – 09:08] Viv

When you talk about going to these policy makers with this hard evidence with the work you’ve already done, are you seeing the urgent response that you are hoping for?

[09:09 – 11:03] Sébastien

I guess I should say I speak to both policy makers but also climate activists. So there is a lot of ableism in the climate movement itself and I I have to say I understand because honestly before I had MS it never occurred to me that linkages between disability climate change. It never occurred to me two three hour demonstration walking through the streets of the city might not be accessible to a whole bunch of people. I was one of those people who would ride their bike to work and I would look at the people driving and think my God these people are misguided and they’re just they’re just part of the problem and then my first year with MS actually I had difficulty walking so I had to drive to work and that experience actually was transformative for me because I was kind of thinking like okay so I need a car to get around right now and I had to come to terms with that but it brought me to a space of empathy to basically be like okay so maybe these other people, what do I know about these people’s lives? What structures? What pressures are they facing? What impairments do they have? You know so it actually brought me into a place of empathy and which I then later discovered is really important in the literature on inclusive design as well. So trying to understand how people use something and why and putting yourself in their shoes. So I think that there’s still a lot of work to be done in the climate movement around sort of you know the people who are the typical people climate activists, there are still a lot of things that they don’t know about disability even though there is more and more sort of disabled people who are climate activists as well.

[11:04 – 11:50] Viv

I work in the disability Tech space and so I’m constantly surrounded by this excited energy but I also know that when I step out of my work bubble and I chat with people that aren’t working in this space they’re kind of like wow that’s great what a what a niche I never knew that existed and I go well your phone exists your laptop exists the internet exists and that started from this really cool place of people with lived experience of disability innovating and designing and creating solutions that are part of everybody’s day-to-day life which is what you talk about when you say inclusive design is better for everyone if we’re thinking big and bold here when we look to the future of climate change and how that really involves people with disabilities what are some of the things that you think technology could help with if we’re dreaming big?

[11:50 – 15:49] Sébastien

If you don’t mind I’ll start with with a story actually which is that you know I started by saying that I ended up working on disability and climate change because I realized I was intolerant to heat but the story doesn’t end there basically what happened after that was I started thinking okay what can I do about this because I’m not you know I had read this book of someone who had MS and they said yeah in the summer I stay inside and that wasn’t something that was acceptable to me especially with you know having a small kid and loving to be outdoors. So I kind of started thinking surely someone has solved the problem of how you stay cool in the summer when it’s hot and actually my first thought was of mascots at Disney World in Florida. Okay my thought was these people are in super hot costumes in July and Orlando what do they do? So I started researching basically the niche world of people who are mascots and I discovered that they wear these cooling vests and I eventually sourced basically this cooling vest for myself. So basically it’s like a vest and you put inside this sort of liquid that freezes at four degrees Celsius. Okay and what’s cool about that is well cool sorry for the pun, but it keeps your body cool for three hours. So I was sort of you know walking around in July and August in those in those periods of time wearing these cooling vests they were like my assistive device if you will and I was perfectly fine and as I was sort of doing this and people would be like what is that and like menopausal women we were like oh my God like I need that and occurred to me actually that if you know possibly everyone will need these vests if our summers are averaging 40 degrees and we still wanted we don’t you know right now the advices stay home being in air conditioning, drink water or whatever but I’m guessing that people are gonna still want to be outside and so we’re going to have to adapt and design innovative solutions. So my little story about the Icevest is sort of building on that I think in a way the people who are most affected now by climate change so people with disabilities, we are already sort of constantly in our lives having to come up with solutions having to innovate. I like to think that people with disabilities are masters in resilience, we have to navigate a world that’s not been designed for us and find all of these tips and these tricks and these things to get through life and be happy and be employed and all these things and I think sometimes it’s interesting. Like the pandemic you know, teleworking all the people that I knew who had disabilities who were completely used to working from home really like there was not much of an adjustment for us. We already were used to doing things you know part time remotely or whatever. So I think actually what I would love for governments and also companies that design products like leisure wear companies, athletic companies, like these companies should be figuring out how people will exercise in the future or when it’s really hot and the people they should turn to are people with disabilities. We’re the ones who right now are facing the most severe impacts of this crisis and we’re coming up with solutions because we’re not just you know going to stop going outside. I just don’t think that’s the sort of approach that most people I know have instead we’re just constantly trying to find tips tricks strategies to and innovating and developing solutions.

[15:49 – 15:58] Viv

At the end of these conversations I like to invite all of the guests to share an insight and a remarkable insight to be a bit punny…

[15:58 – 17:30] Sébastien

I guess I’ll say I’m relatively new to the disability world and I’ve had the good fortune of meeting a number of experienced disability activists and one of those people is a colleague who helped me sort of start the program I remember her name is Yolanda Munos and she’s been involved in the disability rights movement for decades and I remember saying she said something to me early on when we were working on this project she said you know Sebastian they’re not going to invite us to the table like we’re just gonna have to show up and ask for a place at the table and I realized yeah that’s always been the case right the very foundations of the disability rights movement were people showing up and asking for their rights and asking for changes to infrastructures and policies and programs. So I think really as much as I think that the climate movement and climate policy makers haven’t sort of thought through how they could be more accessible to people with disabilities I think honestly those of us who have disabilities gonna have to ask for that and so yeah that’s I guess my insight is basically that we’re going to have to show up, they’re not going to let us to the table.

[17:31 – 17:42] Viv

The full interview with our guest can be found in the link below where you pressed play on this podcast – our show notes. Make sure you subscribe or hit follow to not miss another Remarkable insights episode.

DOWNLOAD A WORD VERSION OF THE TRANSCRIPT HERE.

Watch the full video recording of this podcast here.

Connect with Prof. Sébastien Jodoin on LinkedIn and learn more about Disability Inclusive Climate Action Research Programme.

Remarkable Insights: Matt Pierri

Transcript

[00:00 – 00:28] Viv

From Melbourne to the hallways of Oxford University! Aussie guy Matt Pierri, Creator and CEO of the “Sociability” app, joins us to talk about his mission to empower disabled individuals to benefit from greater social inclusion and meaningful equality of opportunity. We also talk about the obvious but frequently disregarded economic advantages of accessibility.

[00:28] Viv

Matt. Hello!

[00:28-00:29] MATT

Hi Viv, how are you?

[00:30-00:47] Viv

I’m well! Your setup looks amazing. It also sort of looks like one of those zoom default backgrounds of a library. For accessibility reasons, we were asking people if we could start off, if you wouldn’t mind doing a visual description of yourself. So just what you look like in the setting that you’re in.

[00:47-01:02] Matt

Sure. I’m a 31 year old male with dark hair, dark eyebrows seated at a desk in front of a bookshelf and a messy kitchen.

[01:02 – 1:23] Viv

Thank you so much for joining us today. As incredible and vast as everything you’ve done is and sounds, in essence you’re a young guy and there’ve been so many moments where you just want to go out and have fun and there’s just been barriers that have been presented to you. Can you sort of speak to that experience and that sort of frustration points and you just going to create a solution?

[01:02 – 1:23] Matt

Yeah, sure. I mean, I think probably the relevant context is so I had a spinal cord injury when I was 15 playing AFL at school. And so I use a wheelchair now and I’ve used wheelchairs since. And I think that was definitely a real eye-opening experience for me. Just in the sense of, you know, from. The day before, to the day after you know, my whole life shifted, but I think what particularly was a combination of confusing slash frustrating for me was that everybody looked at me differently. There was all of a sudden, all these kind of stereotypes and preconceptions around who I was, who I would be, what I wanted to do, what I could do, you know, what I should do. Because all of a sudden I was using a wheelchair and for me, you know, for all intensive purposes I was just now sitting down, you know, There’s more, you know, there’s definitely more elements to spinal cord injuries, but, you know, in terms of like who I was and my ambitions and, interests, you know, none of that had changed. I just sort of had to go about them in different way. And yet I found it really frustrating that I would go into spaces or I would, you know, apply to do things. And I was just met with a wall of skepticism, but also this kind of somewhat, you know, benign kind of, protection, you know, mentality people, you shouldn’t do this, it’s not safe or you, shouldn’t try that. That’s gonna be too hard or, you know, for your own safety or wellbeing, don’t do these things and that has definitely sort of guided a lot of my actions and activities around what I feel needs to change in the disability space, particularly for young disabled people. But exactly to your point, a lot of what I’ve done is simply to try and find ways to do the things that I was otherwise doing or wanted to do with my friends which are, you know not particularly sophisticated, it’s sort of going out, spending time with each other and having fun.

[03:12 – 03:30] Viv

And you’ve kind of spoken before about your relationship with the word, you know, the language and how important it is. Specifically this, sort of identity first and people first and, mainly this word disability. How do you think language plays a role in the work you are doing? Personally and professionally?

[03:30 – 05:36] Matt

Yeah, for sure. I think it’s a really important part. I mean, I think there is definitely, you know, a caveat by saying, I think definitely it can become sometimes the focus of things and like the kind of core concern or debate, which I think is probably a distraction. But The way in which we talk about things influences the way in which we think about things and, therefore, influences how we act. On my end, I think having personally sort of gone. A bit of full circle with the word disability specifically or disabled. When I first had my accident, I was very adamantI was not disabled. I didn’t have a disability, I had an injury andI didn’t really wanna be associated with the disabled community. And that was, you know, a lot of internalized ableism, really. Over time. I’ve definitely become much more confident and comfortable with the fact that I have a disability and doesn’t really mean much in terms of who I am or what I can do. You know, in this sort of a macro sense I’m not gonna be running up any stairs anytime soon, but I’ll take the ramp and that doesn’t, to me kind of import any value, right? I’m not better or worse cause I used the ramp instead of the stairs. And I think for me, I’ve sort of settled on the idea that actually it’s really important to. You know, whatever we wanna call it, but like reclaim the word disability. People’s talk about how the word disabled is a really negative one and therefore we shouldn’t use it. But not using the word. Doesn’t make it less negative. It just puts it out of sight out of mind. And also every other word that people use instead is very clearly replacing disability. It’s not like we’ve kind of come up with some separate term that is not associated with the concept. We just use a kind of a mixture of, sort of pretend things like special abilities or, you know differently abled or whatever it might be. And I think the real concern there is that we’re not actually solving the problem, which is that we have this false association of negativity with the concept of disability and simply rebranding it doesn’t remove that. It just pushes it under the rug. And so I don’t have a problem now with saying disabled or disability because I’d rather say it. And actually just counter the argument that it’s, negative than to sort of just pretend that it doesn’t exist.

[05:36 – 05:44] Viv

And in terms of your work at Sociability is there anything that you are doing there? That’s really trying to change that narrative?

[05:46 – 10:29] Matt

Yeah. I mean, so yeah, to kind of step back. So Sociability is this platform, is the technology company I’ve started we’re based in East London and we’re building a platform. We’ve built a platform where anybody can go and find information about the accessibility of local venues, particularly. So cafes, restaurants, bars, you know, small format, hospitality and retail sites. And you can find that information in a level of detail that allows you to decide whether or not that space is accessible for you. You know, depending on your personal needs and preferences, but also in contexts, because I think historically. People have said, yeah, I’m sure my venue’s accessible. And they don’t know whether you’re a wheelchair user or whether you’re blind or whether you’re coming with one person or whether you’re coming for half an hour or the whole evening. There’s no right way in which they can sort of meaningfully tell you a space is accessible unless they know who you are, what you’re doing, why you’re coming, etc…and so we want to use technology to help. Break that down and actually understand who our users are and pair it with, you know, really detailed information that is as objective as possible and give people that confidence, and peace of mind that, you know, venue X will suit them in, you know, on day Z and in particular context, you know, Y and that I think is something which we can, you know, do given the, data we’re collecting of the technology we’re building. You know, we’re not a charity, we’re a business, we’re a technology company. And the goal really is to push, you know thats, Actually more so for a philosophical reason, it’s the push against this narrative that like disability is necessarily associated with charity. Because historically the conversation around disability is that disabled people should be pitied and they need your help and you should give to them, you know when you can, because it’s the good thing to do. And the disabled population, at least in the UK has, you know a huge untapped economic spending power. Their rough estimates are for disabled people and their friends and family. It’s around 274 billion pounds a year of spending powers. Most of which is not tapped into because of stupid things like a lack of accessibility or, you know, a lack of accessibility on the website, and in the same way that organizations or businesses will pay to attract more customers who are not disabled through marketing or through amenities or making their spaces, you know, More enjoyable to be in the disabled population should be catered to, because they’re people who have money to spend and who wanna do things, not because there’s some sort of guilt associated with letting in the kind of token wheelchair user. That’s not to say, I don’t agree with the. Argument, this is just an equity thing. We should just do this because it’s a, you know, it’s a human rights issue. I definitely agree with that. But I think part of the problem is that if we just put disabled people in a separate bucket, they’ll always be othered. And you end up with these policies that are inclusive, but othering, right? Which is this, which is sort of where we are today, where you’ll go to a restaurant and the accessible entrance will be around the back through the kitchen and the garbage area. No other patrons have to walk through the garbage shoot to get into the restaurant, but there’s a sense that like, well for disabled people, we have a separate approach and a separate thing. And to some extent they should be grateful that we’ve done, that it’s not built into the framework of, you know, running a business or opening a, restaurant, for example, it’s bolted on as like a luxury and a value. And until we start to see disabled people as equal consumers and customers, which is what these businesses are looking for. Right? It’s a commercial setting. It’ll always be a nice to have rather than a must have for for a lot of these organizations. And so sociability, what we’re trying to do is help kickstart that change by making it easier for disabled people to go into these spaces. And to just be seen, you know, The caveat, obviously a lot of disabilities are invisible, but the general point is that the more disabled people you can get out. And about the more you start to break down these stereotypes, they don’t want to go out that they can’t go out, that they’re not interested. And unfortunately for disabled people in a world that’s not built with accessibility in mind. You know, knowledge is the real driver that will help facilitate this. It’ll be great if tomorrow every building was built with some sort of level of universal accessibility, but that one doesn’t isn’t gonna happen. And two there, isn’t sort of this universal standard accessibility anyway. And so to the extent that we can help disabled people plan ahead and like figure out where they can go and choose, you know, have actual empowered decisions in this context. I think that is gonna make a big difference in terms of then driving representation and driving kind of more positive stereotypes. what we’re trying to do at Sociability really is collect accessibility information and organize it and then give it to the right people initially that’s to your users and individuals, but ultimately that will be to other organizations to enhance their services and unlock those for disabled people. And I think the more we can start to use technology in a really positive. Impactful way for, you know, what has largely been a forgotten population in terms of the tech boom. We can make huge gains in terms of inclusion and equality,

[10:29 – 10:40] Viv

You referenced in the UK, the. I believe it’s called the purple pound. Can you sort of speak to what the current status of the purple pound is like how much we’re talking?

[10:41 – 11:44] Matt

Yeah. So the purple pound at least, I mean, I think estimates will shift, but the latest one is around 274 billion pounds per year of spending power for disabled people and their friends and family. And that’s important, right? Because like, if I go to a restaurant with my girlfriend if there’s a step there and we can’t get in, we both go elsewhere. Or if I’m with a group of friends, you know, I don’t just sit outside while I’ll, while they go inside. And in the same way that you know, establishments have really embraced the idea of dietary requirements. It’s the exact same logic. If you went with a group of 10 people to a steak restaurant, and one of them was vegan, you would all just go elsewhere. You wouldn’t just like, let them look at the steak. And I think that’s the same thing that would happen with disabled people, but we don’t have the same narratives around like disabled people going out, their friends and families to restaurants and bars and clubs. Right? The narratives are the to disabled person is at home ordering Deliveroo, you know, by themselves which is not true. And part of the, kind of our mission and Sociability is to facilitate that, reality, which people don’t see, but to make it much more commonplace.

[11:45 – 12:41] Viv

And I suppose bringing it back, you know, into the tech side of building an app about accessibility you know, Remarkable are the first to flag, we, we absolutely are committed to driving inclusive, accessible tech. However, we don’t always get it right in the tools that we use and the things that we’ve built. And I think that sort of honesty is part of the process. We’re not gonna get it right all the time, but we are committed. And I’m curious to know. As you’ve been developing this app, have there been parts of the app itself that you’ve had to sort of navigate that weren’t accessible because the technology wasn’t available yet to just design an app, completely accessibly from the get go?

[12:42 – 15:00] Matt

Yeah, I mean, I think, I mean, definitely, and we’re, you know, very much in the same boat that we’re building a tool. You know, [00:31:00] physical or real world accessibility. But it’s a digital tool, you know, it’s available on mobile and web and it, similarly has to be as accessible as possible otherwise it’s not helpful and it’s also highly ironic. So on our end, you know, we, I think to your point, also take this approach that accessibility, you know, particularly from a digital standpoint but just generally is not a sort of set and forget thing. It’s not a tick box exercise. You can’t say great, it’s accessible. Now I can just carry on. It is an attitude, it’s an ongoing kind of evolving thing. And you know, on our end, accessibility is all about people. It’s all about functionality. It’s about how somebody can use something or do something in a way that, you know, meets their needs. And to that extent, as the platform evolves and changes and, we add new features and kind of, you know, get user feedback about X, Y, or Z we have to consider accessibility at all stages. So on our end, we’ve done our, you know, kind of best to get it up to a baseline. And we’re always looking to actively improve it, but, you know, really we’re very fortunate that we’re building a community where users are able to feed back to us. Pretty directly what does and doesn’t work? And as a company, you know, we’re prioritizing making those changes around accessibility as soon as possible as, you know, as the kind of highest priority. And I think to your point, it’s definitely a, learning curve, but also, you know, in an exciting sort of sense, we’re building an internal expertise around how to build an accessible digital product, because exactly to your point there, aren’t a lot of It’s not a problem that’s been solved. Put it that way and there’s definitely guidelines to kind of best practice and things like that, but not a lot of it. And part of the challenge is how do you also make something that is highly accessible and cool and fun and like exciting to use, right? That doesn’t look like it was built in a hospital. And I think on our end, you know, to answer your question in one specific area, we’ve found that’s a little bit challenging is, you know, using a map we’ve built a tool. That is based around this idea of finding things nearby and local venues. And we went with a map initially as to the, kind of layout and format maps are not particularly easy for people with visual impairments to navigate. And so that’s something we’ve taken on board in terms of feedback. And you know, Without going too much into the detail. The next version of the app will sort of be pushing a little bit away from the idea of, the map is the central interface, because it’s something that is not fully accessible to everybody. And that’s been a really useful learning curve on our end of also just challenging some of the preconceptions that we have around how the platform should look and feel. But also the reality is like I’m a wheelchair user. So I am biased as to what accessibility things are more or less apparent. And what we’re really trying to do as a team is like really broaden our understanding of what accessibility means for the kind of the pan disability spectrum. And that’s definitely a challenge, but a, you know, a really rewarding one.

[15:00 – 15:32] Viv

So cool. And I’m conscious of time and I suspect you have got a busy day but at the end of these, I mentioned that we like to ask guests. And that sort of is a title that encompasses whatever you feel, you know, speaks to you most, whether that’s a piece of advice, words of wisdom, a fact about the progress and the change that’s happened or, you know, the future of sociability but I’m gonna pass the mic to you. And if there’s one thing you’d like to leave people with. Go ahead.

[15:32 – 16:45] Matt

At the end of the day you know we, as people can choose to do lots of different things and I think the biggest learning on my end has been that if you choose to do things that you’re passionate about and you believe in and you know, you work hard at those, but also you kind of put into the world the, energy that you think should come out of it. It’ll hopefully all be okay. But I think on my end, you know, it’s been a really important lesson to actually be comfortable doing things that I think people disagree with, or tell you that it’s not possible or say that’s not gonna happen. If you are passionate about it and you really believe in what you’re doing and you think there’s a really good reason for why it should exist, or you should be doing it, that’s the main thing. And you know, you spend a lot of your time working and sort of, you know, trying to be productive. And if you’re not doing it for something that you believe in or you’re passionate about, then why are you doing it? So I think on my end, my not sure how remarkable it is, but my insight would simply be that I think with people who are thinking about ideas and have these things in their mind, and they’re wondering whether or not they should sort of take that first step to go and pursue something which they’ve been told is, not feasible or sounds silly, or they shouldn’t do it. I think the main driver is, are you passionate about it? And do you believe in it? And I think that’s the kind of, for me… criterion of whether or not it’ll be a success.

[16:45 – 17:00] Viv

The full interview with our guest can be found in the links below where you pressed play on this podcast, our show notes. Make sure you subscribe or hit follow to not miss another Remarkable Insights episode.

DOWNLOAD A WORD VERSION OF THE TRANSCRIPT HERE.  

Watch the full video recording of this podcast here.

Connect with Matt Pierri no LinkedIn and follow Sociability’s social media channels. 

Remarkable Insights: Giselle Mota

Transcript

Tech themed Music transition

[00:00 – 00:28] Viv

What do you get when you combine a futurist, disability advocate, entrepreneur and the courage to challenge the metaverse? That’s right Gisele Mota! We’re speaking with Giselle, creator of NFTY collective, a project on a mission to bring disability inclusion into web 3 and the metaverse. You will also hear exactly what the heck the metaverse is and why it’s important we build with inclusion and accessibility from the start.

[00:28 – 00:31] Giselle

Thank you so much, it’s so good to be with you talking.

[00:31 – 00:46] Viv

At the start of this conversation I always like to ask people because this will be a video podcast as well to do a visual description of themselves, would you mind doing a visual description of your beautiful self in the setting that you’re in?

[00:46 – 01:10] Giselle

Thank you. I’m sitting in my living room in an apartment in New York City. I have my art on the wall, a little couch, a lamp and I am sitting in a chair. I’m wearing a green dark green cardigan a white shirt my hair is brown and black and I have it is long to cut in my shoulder length I’m a black woman or a woman of color and I have big green glasses on

[01:10 – 01:29] Viv

And those glasses are amazing I must say. I would love to pass it over to you to start with. You’ve spoken about how embracing your identity has really empowered you to sort of enter this new chapter of your career and can you speak to that a bit and share that Journey with us?

[01:29 – 03:33] Giselle

Well I do a lot of different things so in my career on my full-time work is that I’m a head of product and or chief of product inclusion at this company that deals with like human capital management technology and then I have my own project called NFTY Collective which is all about bringing people with disabilities into web 3 and the metaverse. So really I came to a point where before I had been focusing a lot on the future of work per se so how do organizations use technologies like artificial intelligence and data analytics and all these different types of tools to solve problems and to think about what the future looks like when it comes to work. It was awesome to be able to do those things but for me the past couple of years and a little bit more the pandemic, the racial and social injustices that were happening around the world like it really made me stop and think about how I was using my time and what I was doing with my impact. As an afro-latina I’m a woman of color you know I have an unseen disability of Dyslexia and I was really impacted by everything that was happening around the world and I wanted to do something about it. I wanted to channel my energy into something positive instead of sitting in frustration. So it led me to take forward actions and just be proactive. So I stopped just looking at the future of work and I started thinking about the future of technology and the future of work and is it inclusive are we bringing people along with us and I did every effort I could so basically the role that I have in my full-time work is a role that was created because I was proactive and it never was a role that existed before my company in an organization of over 60 000 Global employees and now I’m heading up something that’s thinking about inclusion in our products because I care about it. Now I’m doing this project of my own called NFTY Collective because I really don’t want to see people left out of emerging technology, especially people with disabilities.

[03:33 – 03:52] Viv

It’s so wonderful to sort of lead with that passion and be able to bring to the table that lived experience that you have, you know how do you explain to someone who doesn’t have any understanding of blockchains or web3 or the metaverse what this sort of like creative space could do for the world and how it could change their world for the for the better?

[03:55 – 05:11] Giselle

It’s very likened to we’ve been borrowing concepts so we’ve been borrowing concepts from games and think of your favorite animation movie that you’ve probably seen like maybe Avatar is up there for me that concept has morphed into other use cases and applications so now people are reimagining they’re like okay if kids can play and animations can happen on movies and kids can play in these like Virtual Worlds then why can’t we gather together and socialize in places like that and why can’t we learn a new skill in an environment like that that’s virtual or why can’t we actually work on a project together in an environment like that? So all of that is what we’re calling the metaverse and the metaverse is this place of like play and discovery and imagination it is using things like data and artificial intelligence and augmented reality and virtual realities behind the scenes so that’s all the tech that goes behind it but the user experience at the end is all about like imagining you know like it’s like a game it’s like animations but for other cases that we want to use in the real world. So you can go to a virtual concert and watch somebody in their avatar and you could be an avatar and enjoy that experience you know so yeah that’s what it is that’s what the metaverse is.

[05:12 – 05:37] Viv

Amazing that you mentioned the gaming industry because I know that there’s been a lot of work done about the accessibility and inclusion of the gaming industry and it’s made a huge amount of waves recently and I I wonder is there is there a conversation or a debate around the accessibility and inclusion of the metaverse and and the critical importance of that?

[05:38 – 07:06] Giselle

Yes absolutely. So right now as it stands the metaverse is not the most inclusive it is not the most accessible for people with disabilities either in fact when you do go into a lot of these experiences at the beginning it was all around like VR goggles that you have to put on this heavy set on your on your head and some people have motion sickness some people have eye tracking issues where you’ll you won’t be able to enjoy that experience or perhaps you may be low vision or completely blind and how can you enjoy something that’s only fixed on a mechanism of a headset right. So that was a stumbling block and in fact some legislation has come down the line in certain experiences now that you have to if you’re going to create experiences like that on the metaverse and things you have to make it inclusive outside of a VR set so that many people can enjoy it. So today you can get on the computer you can get on a mobile device and still hop into one of these experiences without having to have an expensive and maybe uncomfortable or inaccessible VR set. So yeah it’s also not inclusive in the fact that when you play a lot of these games your avatar is not really someone that if you look like someone who has no arms no legs you’re in a wheelchair you use a walking device the way that these systems work for avatar creation they don’t always recognize that that’s a human being or that’s that’s a person so it won’t track that oh that’s that’s a human in a in a device in a wheelchair it’ll be like unrecognizable.

[07:06 – 07:22] Viv

A part of the accessibility is the affordability of things you know. Yes, so much of the technology needed for these sorts of experiences is expensive. Is it sort of moving toward a point where you can access the metaverse without these sorts of things?

[07:23 – 08:16] Giselle

In fact the only things the only platform providers that we are partnering up with right now have to have we’re we’re saying you cannot just be based on a headset to have the experience so for us it’s like you can literally use your laptop you can use your navigation keys to get around or if you plug in for example an Xbox controller that is adaptable or accessible right for people with different disabilities you can use that to get around or you know there’s many different ways in which we’ll we’ll think about that for the VR – virtual reality it’s when you want to feel like you’re having a first person experience that’s more immersive where you feel like you are literally in that space and you can feel like when you’re looking around your avatar is looking around it’s jumping you’re jumping like that is the experience so that is something that a lot of VR providers the technology providers are like reimagining how they can bring down the price point so it’s truly accessible so there’s a lot of imagination that needs to be done there

[08:16 – 08:27] Viv

From where it’s at now you sort of speak like it currently isn’t accessible, how has it gotten to that point of the design phase and these things are only registering now?

[08:27 – 09:12] Giselle

It should be it should be for us and it should be by us right so like anything that you’re going to be making you should definitely include all sorts of different people who could be your end user in the experience when you’re first starting to design it so I would think I would assume that there was not a lot of people at the table who had disabilities when people were formulating it would be a good idea to have some virtual world and create these spaces because they weren’t really thinking. So now it’s catching up to where others like myself are saying wait a minute we need to like make this more accessible and or like me you’re saying you know what it’s not accessible so I’m gonna create opportunities where they where they are more accessible and so we’re having like rebellious people like me step in and try to change things right now.

[08:27 – 09:31] Viv

It’s brilliant you Rebel! How do you think we go about policing the Integrity of that intentional commitment to inclusion and accessibility just knowing that the landscape of technology and accessibility is constantly shifting and changing?

[09:31 – 10:17] Giselle
For sure, I think one of the ways that we’re starting to see is that there are associations starting to form and legislation starting to come down the pipeline to legislate and regulate. If you are having some sort of technology experience you have to consider accessibility, you have to consider it all kinds of inclusion. So you might have a person of color that has experienced this or people of different gender representations or people who speak different languages or live in different parts of the world you can’t just create something with one you know one scope in mind anymore including people with disabilities you have to think about that so that’s happening now there’s many groups of people that are forming these coalitions and associations and form drafting out laws so that’s promising.

[10:17 – 10:28] Viv

And I suppose that leads beautifully to the work that you’re doing with the NFTY Collective. What exactly is your sole mission with this incredible initiative?

[10:28 – 11:25] Giselle

The mission is to highlight amazing people right and to give them the opportunity and I’m talking about people with disabilities and to give them the opportunity to show up as they are in web 3 and metaverse spaces and so for me it’s a space like we’ve been discussing that lacks, severely lacks, diversity it severely lacks representation of people with disabilities. So we’re working with people from around the world and we created avatars in their likeness and we’re using those avatars through we provide them as an NFT to some of them a non-fungible token where they can like create value with that and sell it or trade it if they want to they are now we’re making games out of these avatars so that they could show up in experiences. We’re doing a lot of different things but it’s again I’m being rebellious and just interjecting people into a space that has not included them and that’s what that’s what I’m up to that’s what I have to say.

[11:25 – 11:39] Viv

Although it’s a rebellion it’s a celebration. What is it opening up you know when people step into a space like a metaverse and they have an avatar that represents themselves. What are the other doors that open all of a sudden?

[11:39 – 13:06] Giselle

A lot of times I’ve spoken with people with disabilities and we started very organically we started to reach out to people and ask them simply would you like us to create an avatar of you and we explained to them what we were doing and they wanted to be a part of it and when they did in many cases we would have people literally start crying or literally just express how honored and touched that they were that somebody thought of them enough to not leave them out of something that was coming out yet again that was gonna leave them out. It’s important to yeah to make representation and I feel like that’s opening a door to make it more normal and to to shed a light on that hey when you design any technology you should be including people with disabilities and I don’t want to get emotional here but what I am aiming to do is also give people a chance to see themselves in an experience that’s so cool and so forward thinking that they could say I was a part of that during my lifetime I was a part of this experience and so those are the kind of doors that open up as well. Now we are being invited to create games and um inclusive art galleries with some of our characters and learning and development experiences for organizations and some people have asked us can we use your characters to you know add on to our products so that we can if we do have a little character in our product somewhere it can be someone with a disability so there’s so many different like opportunities that are coming up and the sky’s the limit.

[13:07 – 13:17] Viv

Being so closely and emotionally involved in this project what do you think about the risks involved in this space and in bringing these avatars into a space?

[13:17 – 14:17] Giselle

Yeah it’s funny, I’m guarding this project because of risks. I’m guarding it, I’m being careful with it I’m not opening it to just everybody and anybody can do anything in fact even people with disabilities have sometimes approached from an angle that is not mission-centric to what I’m trying to do and I’ve said you know I’ve had to turn some people away for wanting to kind of even look at this as a way to monetize or to do something where it’s not the mission-center that I want to focus on so all sides there’s risk from all sides, there’s risks from the people in the community themselves who are you know that that might not align to the vision that I have and what we’re trying to do and then there’s risk to other people who have approached me about funding opportunities but they only see it as like they do their math they’re like wait there’s one billion people in the world with disabilities and if you do this then we can do and I’m like like so there’s a lot of from the angle of disabilities there’s a risk. From the angle of you know technologies and what they’re trying to do in a space of the metaverse as well and how if they don’t put guard rails to your point that you were saying before that they people can be exploited people can be discriminated against like there’s a lot of things that can happen so I’m being very careful and very calculated with who we partner with what we collaborate on and how we’re using these characters. So really good question you ask some really good questions by the way you must do this often?

[14:17 – 15:08] Viv

I just got a really great guest. I’m so excited by the friendship! and is there a future for a NFTY Avatar that would if someone is low vision or blind is there sort of any future for a character to be sort of based on haptics or or an audio described experience for someone?

[15:08 – 16:28] Giselle

Yes absolutely, that’s on the road map. So we have a couple of things on the map and one of them is using an algorithm and artificial intelligence to turn an image into sound so we next have ways in which we want to get the people who are not able to see their Avatar or experience it in that way visually that they’ll be able to hear a version of what they look like and so it sounds super nerdy but that’s a possibility and we’re exploring that we’re also exploring we’re doing a virtual gallery an art gallery and we’re making sure that it has audio descriptions so that someone who’s low vision or blind can enjoy that experience without having to see it they can still enjoy going to a gallery right. We just did an experience recently through augmented reality where you put up your phone or your mobile device and you scan a QR code and you’re able to see an experience like the story of NFTY Collective what we did with that is that right after the the you know first version of that story it was an audio description version of that story so that people using a screen reader and still have the ability to like pop up the experience on their mobile device could then hear it and enjoy everything else that was happening from the background music, to the descriptions of the characters and all that and we will continue to do that

[16:28 – 17:24] Viv

Wow, it’s like I’m not gonna lie when I when I first heard of the metaverse I was a little scared I just kind of thought oh gosh I’ve seen so many movies and that’s pretty much the only basis for my fear it was movies but hearing this and the excitement of these amazing things it just sounds like like you say like a playful land that we can go and just have all of these really creative experiences. At the end of these conversations we always like to invite our lovely guests to to leave us with a remarkable insight and that could be a piece of advice or a statistic about the metaverse or some sort of words of wisdom that you would like to leave people with that are thought-provoking when it comes to designing tech or experiences for the metaverse. What is something that you would like to leave people with?

[17:24 – 17:40] Giselle

Honestly approach it like we’ve approached anything else with technology if you know if you’re a technology provider think about the people that you’re trying to create for and don’t leave them out and it’s very simple that’s all I want to say as a message don’t leave people out of your experiences

[17:40 – 17:53] Viv

The full interview with our guest can be found in the link below where you press play on this podcast our show notes make sure you subscribe or hit follow to not miss another remarkable insights episode.

DOWNLOAD A WORD VERSION OF THE TRANSCRIPT HERE.

Watch the full video recording of this podcast here.

Connect with Giselle Mota on LinkedIn and follow NFTY Collective on Instagram.

Remarkable Insights: Jonathan Kaufman

Transcript

[00:00 – 00:37] Viv

Just outside of New York the term “Disability Economy” is making its way across the globe and this is thanks to the brilliant work of Professor Jonathan Kaufman.

Born with Cerebral Palsy, Jonathan’s disability has been a profound part of his personal, academic, and professional life and it’s also how he ended up as the former Policy Advisor to the White House on Diversity and Disability and with a column in Forbes magazine.

In the following conversation we dive into the brilliant mind of Jonathan unpacking the concept of the Disability Economy and what this market means for the future of the tech industry.

[00:39 – 00:54] Viv

Jonathan, thank you so much for coming.To start off, I’d love it if you wouldn’t mind doing a visual description of yourself because this will be a video podcast as well. So if you wouldn’t mind just describing what you look like in your setting, that would be wonderful.

[00:54 – 01:20] Jonathan

Sure. You know, at this point I must say, I am now middle-aged. Sort of, I guess, Caucasian man, you know, sort of, I used to have cur- very curly hair, but you know, wavy hair glasses wearing a black t-shirt as I normally do, this is sort of my normal uniform black t-shirts and jeans are sort of my favorite and slightly scruffy, but it’s morning time. So I think it’s always scruffy. Yeah.

[01:20 – 01:47] Viv

Thank you. I’m Viv I’ve got very fair skin and long dark brown hair, and I always seem to be sporting red lipstick but I am so excited to be speaking with you today.You’ve mentioned when we spoke earlier that your, disability sort of colored your life in a way and, the trajectory that you went on from a young age, would you mind speaking to that?

[01:47 – 03:33] Jonathan

No, I talk about it all the time. I mean, I was born what they call the sort of medical terminology is I was born with the right M E paresis, a form of cerebral palsy. And so in, in sort of layman’s terms, it means that essentially. It’s really the left side of my body that works fully. The right side is debatable. And I always think of myself as having two sides and in my house, the right side of my body is called Bob and Bob has a personality of his own. And Bob decides, you know, when he’s spastic, I mean, my significant other always, she always goes, I know when you’re angry because Bob never lies. He sort of takes a mind of his own and has his own personality. So yes, I live with another person that I deal with every day. I mean the truth of the matter is I’ve learned to deal with it. But it’s given me a tremendous amount of gifts. I think. I think my disability is my gift. And so in so many ways it’s been up and down. There’s been moments when you’re sort of thinking about, okay, how do I live day to day when you’re in an insignificant amount of pain? And Iuse humor a lot to hide it, but I always think that’s something that’s good. I understand. Okay, where is my place? And being able to evolve and actually being able to innovate, because the fact of the matter is the world. Like for many people, with different types of disabilities, the world wasn’t designed for us. So we have to figure out, okay, how do we reframe it so that we can, I think, navigate through it.

[03:33] Viv

And, going back to the start of your D and I work. There’s this one story that I love, which you had a surprise lecturer at, your university?

[03:44 – 05:50] Jonathan

Oh, you mean the surprise lecturer at the University of Chicago? Barack Obama. Barack Obama before he was Senator Barack Obama, before he was president of the United States. And, you know, it absolutely sort of shaped my career cause I always thought I would be a full-time academic. At least I thought. And then when I was taking classes with him, it sort of changed the trajectory of how I thought, where my life would go. And really what changed was subsequent to that. I went on to Columbia University in New York. And then he was running for president and all my friends who knew him or knew him said, he’s running. And do you want to be a part of this? And. Subsequently sort of, sort of securitas route. I had heard he was going to create the first advisor to the president on disability policy and lo and behold, I got a call, but the thing was, is I lived in Los Angeles at the time I wasn’t living close. And so I said, yes, And so what ended up happening was that I helped design the policies and the programs and helped train. The person who was actually on sort of, I guess, on location in the white house, around disability policy and politics. And I had a variety of different verticals and different portfolios within the US government And what’s actually even more interesting is that I was on a medical ethics committee at the University of Chicago hospitals with Michelle Obama, who I think is even more fascinating than he is. I mean, he’s a great guy and he was a wonderful professor, but she was really interesting. And just to sort of be with her and get to know how her brain worked and her mind worked was really interesting. So I got to know the Obama family. I mean, this is going back ways into the sort of nine, the, you know, mid to late nineties.

[05:50 – 06:00] Viv

Wow. And, what did, when you are talking about Michelle, it sounds like you, you had a you got to know her in a really special way. What is it that was so impressive about her that perhaps other people wouldn’t know?

[06:00 – 06:23] Jonathan

Well I think people know she was smart as a whip. because it was a medical ethics committee. She had this level of empathy. That was extraordinary. I mean, I think anybody who is on a medical ethics community really has to have that. But it was interesting in terms of her way of negotiating with people and seeing the way that she connected with human beings was, great.

[06:23 – 06:39] Viv

When it comes to policy change, what are the red flags that you see as being sort of the barriers to this change? Is it a majority vote? Is it just a lack of awareness or is it division between parties? What are the real roadblocks?

[06:40 – 08:20] Jonathan

I mean I think initially it is a lack of awareness. Politics do play a role in it. And we’re sort of in this funky time globally and in terms of our political discourse. But I think that initially it’s understanding that we really aren’t that different from one another. And specifically when you’re talking about the disability space, is that look, this is the largest minority on earth and it’s diverse in nature. Which makes it really unique. It runs across free. I always tell my clients and my students that disability is the essence of diversity. It runs across race, ethnicity, gender, socioeconomic, sexual orientation, and it’s the only minority group anyone can join at any time, whether you’re a visitor passing through or whether you’re a permanent resident or it’s the fact that. Not only is this something that’s important as far as from a sort of D&I standpoint, but the value proposition of the community itself impacts everyone. If we’re lucky enough to age, we all join this community. This is an inclusive community by design and that it benefits everyone. If you think about it from the perspective of. Well, we really have to take people with disabilities with all types of disabilities and their narrative into our design processes, whether it be a product or a service or a policy.

[08:20 – 8:56] Viv

I’m curious to know specifically from the point of view of people that have acquired disabilities, how have you seen any sort of trends in your D&I work, where you’ve had to, there’s been people that were employed and then they acquired disabilities and, then all of a sudden employment becomes trickier? Trying to communicate, you know perceptions change for what are just really awful stereotypes and misconceptions about disability that we didn’t judge someone on prior to acquiring a disability?

[08:56 – 11-13] Jonathan

I mean, I think it feeds into the narrative perfectly because I think that the one sort of idea that’s prevalent I always say is the F word, fear. Fear drives that narrative all the time. It’s the fear of the unknown. Rather than saying, okay, let’s get to know it. Let’s get to understand it better so that we can embrace it and say, okay, what do we need as an organization, as an institution to do about it? How do we think about it ? This isn’t about a policy issue, as much as it’s or even a legal issue, which it sort of mired in at times, but it’s really about a design issue. And, you know, it’s fascinating and sort of the age of COVID and we’re gonna be living with COVID when COVID isn’t done, but the silver lining of all of this is that it, was, it sort of, it was an accelerant. In the sense that it accelerated the idea of a hybrid workforce, of the idea of changing the culture of work. And we needed that accelerant, unfortunately, or fortunately, whichever way you sort of look at it, but we needed the accelerant to say, all right, we are now working in a very new time. And yes, there would be some times when you’re sort of in office there’s sometimes when you’re out. Now how does that change the narrative of people with disabilities? It allows them, it allows people with many different types of disabilities to engage in employment. So what you can do is you can say, okay, whether it’s in the D&I, you know, diversity and inclusion, the chief diversity officer and their team, whether it’s in the talent management side or the HR side to say, okay, we understand that this is now a reality.
What one, there are two sides to this; One what do we learn from this community? You know, in terms of needs, in terms of design processes, also the ability to say we can get the best and the brightest. And if they’re working from home, for example, or we have sort of accommodations or design tweaks, we can then. Get people with disabilities involved in the organization at a much faster rate.

[11:17 – 11:40] Viv

It is a massive market now. But in many ways it, sort of always has been, if we look at the technology that is ubiquitous in our life a lot of it was originally born from a need inspired by those with disabilities. Things like, like SMS, which is or texting. Can you think of any other examples of that sort of technology that is ubiquitous with our day to day lives that people probably don’t or perhaps don’t know about?

[11:40 – 13:35] Jonathan

Yeah. I mean, we, you certainly mentioned texting, we talked about that the other day and I always bring that up because that And then, and you think that’s the sort of perfect example is that in 1976 at Gallaudet university in Washington, DC and Gallaudet was known for, it’s like the pretty eminent university for, deaf and hard of hearing. But, it’s like these sort of bastion for deaf culture. So their idea was how do we communicate with one another and. You know, the idea of cell phones was in its nascent stages. And texting became a part of even before the advent of cell phones, but it was adapt. It was adapted for that reason. But even something as simple as what I’m wearing glasses.You know the, advent of glasses in itself. I always tell people when I give it speech, I said, how many of you out there think you have a disability? I said, nobody, somebody, there are people who raise their hand. I said, how many of you have glasses? How many of you take your glasses off for a moment? Can you see? And they’re like, no. So you have to look at glasses themselves as an adaptive tool. We all use adaptive tools in some way, shape or form, it doesn’t matter who we are. It’s part of the human it’s part of the human condition. Actually, I think to use adaptive tools, we can use forks and knives. Those are adaptive tools. So if we’re looking at the history. Of design in any capacity. Human beings have used adaptive tools, whether if you were hunters and gatherers, we were using adaptive tools from the very beginning to live a better quality of life.
So what’s the difference today? Mmm, nothing.

[13:33 – 13:56] Viv

This driving force of nothing about us without us has been huge in the disability advocacy space and really paved a lot of ways for, this understanding of, co-design and, really not making assumptions because that lived experience is critical to getting it right. What is your perspective on that design approach and how it’s transformed over time?

[13:56 – 15:17] Jonathan

Yeah I mean, I actually wrote an article just recently for Forbes. The last article, actually, I said I think we have to rethink the max, nothing about us without us and really think about it. Maybe you should be nothing without us because the fact of the matter is we are a global society. People with disabilities are 20% of the population. Of the global population and is only continuing to grow. And rather than saying nothing about us without us, which is a wonderful statement, But if I think you reframe the model and say nothing with not, you know, you know, nothing without us is that we have, we as a community, have to be, have to have a seat at the table. We have to have a seat at the table for everything. And, why is that important? Because it benefits society, it benefits the sort of financial. And economic prospects of the future. And then there is obviously the diversity piece, but all of this plays into a larger benefit for all. And so that’s really the sort of key driver, I think, for all of this. And I think that’s something that needs to be harnessed again and not only needs to be harnessed. It needs to be expressed again and again until people get it.

[15:17 – 15:39] Viv

So I mentioned earlier that we’d like to sort of wrap these conversations up by asking our lovely guests to share a remarkable insight. And that can range from a fact specifically about the space that you’re super passionate about or it could be a piece of advice or a hope for the future that you would like to leave us…

[15:39 – 17:31] Jonathan

I don’t have a remarkable insight but I always like to tell people, learn from everything and everybody, and everywhere. it’s you almost have to be a sponge because one of the most important things about being alive. Is that there is always something to learn from every experience, whether it be sort of the minutiae of everyday life. I mean, I, you know, I learn from a grocery list to just something that’s so profound, which is watching a great piece of art, you know, whether I think that one of the things that people get caught up in, and in this day in sort of this age of COVID, we’ve all been in this sort of moment of languishing. When we’ve sort of just been standing around, not knowing if we’re depressed and that’s, I think more than reasonable, the last two and a half years have sucked for a lot of us. But now we’re sort of at a moment of reckoning where you have to say, okay, what do we need to do? We’re going to have to live with COVID, but it’s important to learn and important to experience. And what I mean by learn, you can learn from your friends. Which means, you know, start establishing friendships again, start communicating, start engaging with the world around you, because that’s how we learn. That’s how we grow. And so it’s really important I think as human beings to connect and to grow and to learn. And that’s what being alive is about. There’s a wonderful line by William Blake ‘to see the world in a grain of sand and heaven and a wild flower to hold infinity in the palm of your hand and eternity in an hour’. And he wrote that 300 years ago and it still rings true today.

[17:13 – 17:51] Viv

Wonderful, well thank you so much for joining me and sharing all of your insights Jonathan. The full interview with our guest can be found in the link below where you pressed play on this podcast – our show notes. Make sure you subscribe or hit follow to not miss another Remarkable insights episode.

[16:45 – 17:00] Viv

The full interview with our guest can be found in the links below where you pressed play on this podcast, our show notes. Make sure you subscribe or hit follow to not miss another Remarkable Insights episode.

DOWNLOAD A WORD VERSION OF THE TRANSCRIPT HERE.

Watch the full video recording of this podcast here.

Connect with Jonathan Kaufman on LinkedIn and follow his Forbes Column.