The Best of 2023 Disability Leadership with Mai Ling Chan & James Berges

James  0:00 

It's been very interesting this last year to see neurodiversity gain momentum, especially on Tiktok you see, like this community of people proud of their autism and proud of their ADHD, and I just love to see it, seeing their superpowers that go with the things that are also harder for them.

James  0:24 

Hello, and welcome to the exceptional leaders podcast, the final episode of 2023, we dive into the fascinating world of disability accessibility and inclusive technology. I'm your host, James Burgess, and I'm joined by my fantastic co host, Mai Ling Chan, and

Mai Ling 0:41 

On today's episode, we're going to be looking back at 2023. And we're wrapping up the year with a special episode, we're going to be exploring new episodes with leaders trends and milestones, and disability and accessibility, and everything that we recovering from technology innovations to cultural shifts. So let's get started. James.

James  0:58 

Yeah, it's just been an amazing year, we've had so many different leaders from different places. So let's start with the big picture, shall we? Let's set the stage, did you know this Mai Ling, because I forgot that over 27% of the US population lives with some kind of disability, yet only 3% of America websites are accessible to people with disabilities. So this is a huge gap. And this is a theme that's come up over the year, which is, unfortunately, especially in industry, it's run by money. So money talks, and the disability space is no different. As much as I want to be idealistic and say money doesn't matter. If we want to make the case to, you know, companies who provide products, why they should address the accessibility market? Well, if we want to put it in numbers, they're missing out on $490 billion of disposable income. So it's clear that inclusivity isn't just the right thing to do. It's also good for business.

Mai Ling 1:55 

Exactly. And as you probably know, and my listener knows, I was working on the Exceptional Alliances Conference this summer. And we ended up talking to other people in the fishbowl. And what I mean by that is a lot of people who already know like us are disability advocates and allies. And we know that we need to do more, and the actual conference was amazing. But we need to get out there. And we need to help other people to grow and to make the changes. And that brings me to Tanner Gers. He was one of our recent guests on the show. And he talked about his entire company is focused on universal design, and not just going in and saying you need to do this, you need to change that. But they actually will go in and code. And that's what people need. You know, there's one thing to get the checklist of all the things you need to change. It's another thing to have someone be able to come and change it for you. So I really loved what he's doing and how he's helping to really solve the problem. Absolutely.

James  2:50 

And it's not just a checklist, like I've seen these accessibility checklists where it's very basic, like text to speech, or different color grading and whatnot. But it's very basic. And I know most accessibility standards aren't being met by most companies. So there's still a lot of work to do there. And I know that there's certain companies that hire people with disabilities to help shape their products, which is so important, like the idea of design for the audience, with them in mind and their lived experience. And so especially with technology that can reach potentially millions of people, if not billions, if it reaches scale, like Facebook, it's all more important. And even if it's not reaching billions, it can help a lot of people speaking of AI is the hot topic right now. Right? I use Chat GPT for almost too much where it's getting embarrassing how much I use it, but it just keeps getting better. But you can make it more and more specific for certain use cases. So it's sort of democratizing knowledge. Like if you're a specialist with certain knowledge, you can make a specific GPT knowledge base for that use case. For example, Alan Vu one of our past guests, on exceptional leaders podcast, he is a person who stutters, and he makes a AAC app called Flex Speak. And the cool thing about that one is it's multilingual. And he's using AI to help translate all the languages you know, he doesn't speak Cantonese, and Thai and all these different languages. But with the help of AI, it's just amazing that it took this long to make AAC multilingual to help everyone in the world. So I'm excited for for AAC. Another part of of technology that's developing is virtual reality with our friend, Gareth Walkom. He was one of our past guests. He presented ASHA this year with a virtual reality that to me, sorry, I'm cutting you off. No, yeah. You got to meet him. Yeah,

Mai Ling 4:43 

I got to meet him in person and I got to put the headset on at ASHA. And it's on my Facebook and it was so amazing to be immersed in this virtual space. Yeah,

James  4:51 

For me, it's like it just a safe space for people to stutter freely in front of a crowd sort of like exposure therapy. You know, if you're afraid it’s something you don't dive straight off the deep end, you make baby steps and what was what was something that stood out to you, me when you put the headset on?

Mai Ling 5:08 

Well, I love immersive stuff. So like I was first to buy the Oculus. And I just I love that type of experience. And so this was very interesting in that you've been used in the space of stuttering, that it's giving people the opportunity to kind of feel what it would be like to do a presentation or to, you know, be in a certain situation, and just really helping them to experience that as many times as they would want to before getting out there. Yeah,

James  5:35 

I think that you can even make the crowd like start by smiling at you and progressively look more not contemptible, but indifferent. Perhaps, if you want to up the ante, I don't think I'm making that up. I think that is possible. But anyways, you know

Mai Ling 5:53 

 Adding to that Another great example is yono, Welkom’s episode talking about AI and neurodiversity. And honestly, it is really, really interesting to think about how we are feeding AI in a fishbowl, you know, what we put into it? what's already out there. And for those of you who might not know, this chat, GPT only went to what was it September 2022, or 2021.

James  6:19 

Initially, I'm trying to remember yeah, and it was probably like fed on. There were some biases, they found in the way that it spit out representations, depending on what you asked is like, gender biased or culturally biased in certain ways.

Mai Ling 6:34 

And so thinking about that, as you're asking it questions two years later, it's giving you information from two years ago, and the culture and tone of it is really locked in. And we've grown so much in the last two years, especially in terms of disability awareness, and sensitivity and culture and, and all of that. And so Yonah single handedly is out there being an absolute pioneer visionary, he actually refers to himself as a futurist talking about AI and neuro diversity. So I really highly welcome you to listen to that episode, and just get up to date on why it's so important that we continue to feed a high with the most relevant and new and updated information because it does affect us. Absolutely,

James  7:16 

Yeah. Good progressive development now is that AI is getting access to the internet, especially with the new chat, GPT. I think it's for everyone now, especially if you pay for the Plus plan, which is like $20 a month as of this time, and it can connect to the newest articles. So that's a good step forward. But I think there are still biases there. And that's really hard to do at scale. I don't envy the people building this product, because it seems extremely hard to make sure everyone's represented. But it speaks to larger cultural shifts, which is like, you know, we talked about disability and accessibility, do we put all the onus on the individual and technology, you know, to help them navigate a world that is inherently disabling? Or should we look also? And I would say, yes, the broad culture at large, and how we think about disability, or exceptional abilities. And as you spoke to Manning, Yonahh talks about neurodiversity, and it's sort of like reclaiming this movement of thinking of ADHD and autism, not as some deficiency or some, you know, it's all based on normativity, which is biased in itself. You know, where do these norms come from? There's a whole rabbit hole, we could go down there, but from the DSM and how we diagnose to, you know, is it even valuable to be normal? Or do we need people to break the mold? Absolutely, we do. So it's been very interesting this last year to see neurodiversity gain momentum, especially on tick tock you see, like, this community of people proud of their autism and proud of their ADHD, and I just love to see it, seeing their superpowers that go with the things that are also harder for them. And of course, with any new movement, there's like dissenters, and people say, well, what about my friend who needs extra support? And I don't think it's saying that some people don't need support. It's just saying, like, let's shift the narrative from making your own individual to society, embracing differences. And so I love that.

Mai Ling 9:17 

Absolutely. And talking about embracing differences. We have been working so hard to have representation in Hollywood. If you go back to my very first episode six years ago, we were talking with Eileen Grubba, and Easter Seals, where they're having representation at all levels of creating media, and it is finally starting to move forward. And you're seeing that more and more obviously, in marketing and Superbowl ads, and you know, all of these things, and it's just been an amazing time. And we all live through this summer, where we had the writers’ strike, the Writers Guild of America, and that was 11,500 screenwriters, who literally just striked, and they needed to. And then on top of that, then we also had the actors also supported that. And so we had Susan Zachariah. And she talked about representation of all areas of content creation. We also had Greg Grove, you interviewed him. And he talked about using self-deprecating humor to bring awareness to disability. And then Cora Linda is a film producer. And she also is focused on disability representation in creating media. So we've been right there, James, I'm really, really happy about how we were able to align the shows with you know, what's going on in real life. Right?

James  10:39 

Yeah, people like on the ground with disabilities shaping the narratives in their own special ways. You know? Yeah, like, even the idea of comedy is so interesting to me. I'm a huge fan of comedy. So I loved that, that interview, I love dollar interviews, but Greg highlighted, Greg Roquet, highlighted, you know, the ability to take the power back and not see it as like, a disadvantage, but like something that if I can joke about it, it's okay for you to joke about it. I do think humor is healing in the way that we all can make fun of ourselves a little bit, and it's sort of saying, don’t treat me like a baby. Don't infantilize me, obviously, don’t be disrespectful. There's a difference. But Michael, Michael Grimm, it also talks about that one of our other past guests, he's like, people assume he needs help. And then it's like, well, you know, it's nice. Most people have good intentions, but they don't realize that they're being sort of babyish and patronizing to people with disability sometimes. So just being aware of how we're treating people and good intentions don't always come off how we think they do.

Mai Ling 11:41 

Yeah, I think our guests did a phenomenal job of educating us on things like inspiration porn, and I'm not here to inspire you. I'm just going grocery shopping, you know, just and hearing it from them, right and hearing how they are just like us, they get up in the morning, and they have got goals, and they're building companies. And they're doing all these things. And I'm just I'm really, really proud that we were able to get them on the show and hear their stories and share their stories at this level.

James  12:07 

Absolutely. And so shifting gears a little bit, I want to talk about how even these perceptions are culturally mediated. So education can play a big role. But when we talk about geographic location, like was Sandy Dorsey's episode, she travels to Africa, for example, in different countries there. And we need to think about not just culture in American culture, but culture around the world when we talk about disabilities. I love her organization Smiles For Speech. But her episode is insightful and was enlightening to me in the sense that there are certain countries and cultures that view disability as almost being demonic, or, you know, these superstitious attitudes of how disability where it comes from, you know, maybe in some countries they think is because your mother tried to have an abortion and failed, and he's, uh, you know, and that's why you stutter. And these are hard things to talk about. But I think it's important that we talk about them. Yeah, hopefully, because we can't, you know, we have to bring light to not just like the culture of, do we say person with a disability or a disabled person. Language plays a huge role, but so does education when we talk about cross culture. So go back and listen to that episode. After you're done with this one. Also, Mona Minkara, I want to give a shout out to her. She's a blind person with superpowers and assistant professor. And she traveled to multiple countries, she has a YouTube project where she goes to different countries and checks out how accessible they are as a blind person. And it's super insightful to see her lived experience. And, again, it's like she mentioned, some of these places are very accessible, like Tokyo, from a futuristic physical point of view, but not necessarily accessible in the sense of how they treat her as a person. As an individual. They assume she needs a caretaker and someone with her at all times. So there's these different, you know, intersecting variables, we have to think about culture, physical accessibility, cultural attitudes, and so on and so forth. Absolutely.

Mai Ling 14:14 

And that actually brings me to my new best friend and I would say big sister is Dr. Lily Chang. Deep diving into what is May, Speech and Hearing month that I was able to connect with Dr. Lily Tang, and because of that connection, I am now going into my fourth book, and they say it's unexpected because I did this whole thing about how the becoming an exceptional SLP leader was my last book. But now I'm going into my fourth. And with her support together, we're putting this together, it's becoming an exceptional API leader. And what's interesting James's you just touched on a very, very difficult story, you know about how different cultures may have different attitudes towards disability. And that is a lot of what we're focusing on in this book. We are really spotlighting how the Asian culture influence Confucianism, Buddhism, generations, you know, decades of thinking. And they call it collectivism, how that affects the lens on disabilities, disability supports prejudice within different cultures. It's just been amazing. And we are telling those stories firsthand, first person. And so I'm just so honored. I'm excited. And you guys are the first to hear. I actually also announced it at ash. So it was in the last couple of weeks that we were saying that this book will be coming out in February of 2024. So soon, yes, wow. Well, we've been working on it for months.

James  15:39 

Which is pretty fast for a book, I remember when you talked about starting it, I was like, Wow! That sounds really amazing. And now we're finishing it. And, you know, Famous last words from you. This is my last book. I'll never believe

Mai Ling 15:54 

I know. So I'm not even trying it. Now. I don't know what the next one is, although I'm in talks, but I can't say anything yet. But it there's a possibility. But that you know, what it's wonderful is that everything that we do and you know, this, James, everything that you do brings you to the next thing, but it all just connects so beautifully. And so I just want to thank our listeners because, you know, you tuning in and wanting to hear and giving us the feedback that it's valuable. That's what keeps us going and keeps us you know, doing that next project, which James is always on to also.

James  16:23 

Absolutely. Yeah, thank you too, dear listener that is listening to this right now, I really appreciate you sincerely. And it's like even a theme with our guests saying I didn't know what I was going to do next, necessarily, but I knew I had a hunch and I had certain skills I wanted to develop and I followed my bliss or, you know, whatever version of that speaks to you. I was in the tunnel, and I saw the light. But you have to kind of just put one foot in front of the other and have faith that it's going to like more reveal, the more work and the more you go forward, like you start to see more of the forest for the trees and start connecting the dots. All right, so let's shift to sort of a lightning round, I want to highlight some success stories in the world of accessibility from around the world, not just from our podcast, and then we can talk about where we still need to make progress, because there's always more progress to be made. So in 2023, we've seen some wonderful strides in the world of disability accessibility, PBS Kids announced a new series with a lead character on the autism spectrum, which is a significant step in media representation, especially at a young age states across the country are focusing on making parks and trails more accessible, and modernizing facilities and providing altering chairs. I mean, think about like, yeah, nature is it's the original landscape that has to be accessible, like that affects my mental health so much to be into nature and imagine not being able to access it would make me so depressed. So I'm glad that's becoming more at the forefront. Excellent.

Mai Ling 17:57 

Yeah. And then big companies are also taking, taking a really big step and responsibility in making their people feel comfortable and welcomed. And so for example, Walmart has sensory friendly hours, which is amazing, and that, that's just they're trying to accommodate sensory sensitivities. And, you know, actually, I feel that way with IKEA, I don't know what it is, but I go in there and I'm so overloaded and I feel like I can't I can't put together this bed, you know?

James  18:25 

Yeah, it starts with a maze. And there's like fluorescent lighting and they literally usher you through every section. So you figure it out. By the time you're done, you're exhausted and all you can get is some Swedish meatballs and a bed, something that you also have to make at home. So the works not done when you're when you. Yeah, yeah. Shout out to IKEA. That's funny.

Mai Ling 18:48 

And then also we have in sports Emily's Spreeman in the US Women's deaf  national soccer team. It's amazing. And then we've also seen so many people who have prototypes, prosthetics? Thank you. You were no help James. But it's true. So people with prosthetics that are just doing amazing achievements in sports and showing people that you know, what, we we come in all sizes and and abilities and we're achieving our goals. So it's just been beautiful.

James  19:20 

Absolutely. We've done so much in this year. However, despite all these, of course, there's still much work ahead of us in 2024. And hopefully not too far beyond that. But some examples of some not so great things from this past year, were that they found in studies that students with disabilities are disproportionately disciplined compared to their peers. And it's an issue that highlights systemic biases and education. Also, many families need 24/7 homecare for medically fragile individuals and are stuck on long wait lists for Medicaid benefits. So that's, you know, Medicaid and health care all these intersecting things in education, and I work in health tech May and healthcare, especially in the US is in need of so much disruption, let alone for people with disabilities. And lastly, I'll say that disabilities remained severely underrepresented on television. Although we alluded to some great progress there with disability in Hollywood, and PBS, they're still for the population of people disabilities, they're quite underrepresented in the broader popular media.

Mai Ling 20:26 

Yeah, absolutely. And, you know, bullying, I'm a Gen Xer, and we grew up with bullying. That's what made us strong, and from Jersey too so of course, there's bullying, but, you know, in the last couple of years are like bullying bad. And what's really interesting, I had never thought about our kids are bullying our kids with disabilities like OMG, but a former Amazon employee with Asperger syndrome was awarded 1.2 million this year after facing workplace bullying. And that's another amazing fact to know that we have adults that are bullying other adults, like, Okay, this needs to stop. Yeah, yeah.

James  21:03 

Like, come on you if you're working on a job, or if you're an adult, or if you're a person, just don't be a bully. Just don't. Absolutely. So these challenges remind us that while we've made significant progress, the journey towards a full inclusion and accessibility is ongoing. And it's up to all of us. And my call to action to you, dear listener, is to join us, not just podcasters, not just the exceptional leaders, but all of us have, you know, a role to play in shaping these narratives. So let's continue advocating, educating and pushing for change. And as a shameless plug, one easy way you can do that is by sharing one of these episodes of us podcasts, because we put in a lot of work. You know, we do this for absolutely free, actually, probably at a deficit, we pay for lovely people to help edit these episodes, shout out to JD Sutter. Without him, none of this will be possible. And assistance and based social media people that help us so it's like, you know, it's like a grassroots, ongoing project. And we really appreciate helping share this. So we don't have no money to pay for paid ads and advertisements. And so really, it's like, just like anything else in this disability and accessibility space. It's up to us to share these stories, and give them the reach they need.

Mai Ling 22:21 

Yes, just like our Instagram account. Because our Instagram got closed earlier this year, we were never able to have it reinstated. We're up to like 2000 followers, and now we're down to like 500 or something. So please, help help. We need your help.

James  22:34 

I went down a lot. And we share clips from this podcast there. So even if you don't have time to listen to the whole show, you can, you know, sample audio, grams and clips and like, hey, that's interesting. Maybe now listen to that episode, or just share this little tidbit with someone who finds it inspiring. So thank you so much, dear listeners. And as we wrap up today's episode are reminded that the field disability and accessibility is vast, and multi-dimensional from the evolving landscape of technology and AI, all the way to cultural shifts, and how we perceive and talk about this ability. We're really witnessing an era of significant change. And in this change, there's the opportunity to create a more inclusive, accessible and understanding world for all.

Mai Ling 23:19 

Absolutely, and we're looking forward to 2024 James and I already have a beautiful list of guests coming up. And we are really hard to get it to 26 or 25 guests here because we do every other week. And it's been amazing because in the beginning, my first year out it was difficult to get 51 for the whole year, believe it or not. But now there are just so many amazing leaders and people out there and and we just hope that you continue to listen and share. And actually I wanted to let you know you can go back and search by category. So if you're looking for entrepreneurship, or business or nonprofit, or what are some other ones names, neuro diversity, you know, like, you can just

James  23:59 

Search to see ADHD you can search by all these different disabilities or entertainment, like what industry you're in. So whatever piques your interest, you can find something there.

Mai Ling 24:08 

Yep. And I did want to talk about that. We did a lot this year about neuro diversity. And so there are a couple episodes there because as everybody knows this there, there are now a spike in adults being diagnosed with ADHD. I'm included and I do include a little bit of my journey in an episode with Chris Wang. So if we go back to that episode, where we got Chris Wang, Julia Ovrachenko and Vanessa Castañeda Gill all talking about ADHD apps and things for neurodiversity.

James  24:37 

Absolutely, yeah, it's these personal stories and if you have a story and want to share it with us, please message us on Instagram at xleaders starting with the letter x or go to exceptional leaders.com also without an E so just xceptional leaders.com and you can find all the episodes there you can listen on Spotify or Apple podcast, and give us a review. While you're there, tell us your story. We would love to possibly feature people's stories and listeners, because it's you who makes this all possible. So thank you everybody and happy 2023 Stay tuned for an awesome season twenty twenty four thank you so much everyone.

Mai Ling 25:21 

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