Author: Remarkable

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.

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. 

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.