Return to the AccessAbility Podcast Page
Post-Production FILE
AAW-Podcast005-CarolineCasey.mp3
March 6, 2021
Transcription is provided in order to facilitate communication accessibility and may not be a totally verbatim record of the proceedings.
* * * * *
[ Music ]
>> Welcome to the AccessAbility Works podcast.
>> The podcast about the possibilities of accessibility for people with disabilities. I’m Albert Rizzi.
>> And I’m Jonathan Hermus.
>> And this is AccessAbility Works podcast. I’m really looking forward to today’s show, John. We are going to be speaking with Caroline Casey. And Caroline is a fellow advocate and a mover and shaker for Authentic Inclusion and has launched The Valuable 500, an organization that gets in front of C-Suite executives from top corporations all over the world and is asking them to do one thing, commit to inclusion. It’s awesome. But before we get there, what do we got else going on that you want to share with the audience?
>> Well, as far as My Blind Spot goes, we have a blog post coming out soon.
>> That’s about overlays and purportedly quick fixes without having to —
>> Technical solutions.
>> — at the core of the platform. Yeah.
>> Technology and technical solutions.
>> Technology, technological solutions for problems that deal with every —
>> And you can find that blog@myblindspot.org, our website.
>> Yes.
>> You can find more information about My Blind Spot at Facebook, Twitter, LinkedIn, and all that stuff.
>> All the social media outlets.
>> Yeah.
>> You know what also I’m interested in, at some point, we’ll be discussing this down the road. Frank Hogs, who is one of our project managers, also visually impaired, is heading to Phoenix for an experimental trial in stem cell regeneration —
>> That’s cool.
>> — to try and get his eyesight back. And I’m anxious to hear what he has to say. So that’s something I might want to take a look at down the road.
>> Stem cells are a little taboo, but I think they’re exciting. I don’t see why not.
>> Yeah, I know.
>> Was it Neuralink, is it [inaudible].
>> Neuralink, yep, but there is —
>> I’m more about putting computers in my brain [brief laughter].
>> You want to be a cyborg.
>> Hell yeah. Oh, yeah. I want to access the internet at the blink of an eye.
>> Yeah. And then what else do we have coming down the pike. We’ve got a few things, but yeah. So a lot of exciting things happening. We’ve got our administration well underway. We’ve got people who are getting vaccinated. We see a decrease at this point in time of people getting infected, people going to hospitals. So keep up the good work. Wash your hands. Social distance. Get your shots.
>> Wash your hands.
>> Wash your hands, Lois. So yeah, Caroline Casey, just a remarkable power. I’m looking forward to having everybody hear more about her. She’s a friend, a colleague, and she’s somebody I am so empowered by —
>> High energy that lady.
>> Personal story is sick. And what she’s doing with The Valuable 500 is awesome. Getting in front of corporations, global corporations with no less than a thousand people asking them for one simple thing, commit to building inclusive environments and position ability alongside race, gender, orientation, and religion in our corporate and social cultures. I say that redundantly nonstop. And it’s great to introduce Caroline Casey.
[ Music ]
Well, hello, Caroline, how are you today?
>> I’m doing really good. How are you doing today? I don’t really do — I probably have had too much coffee, so I kind of need to ground myself a bit.
>> All right. Well, don’t worry about that. You and I both have caffeine highs. John’s going to level it out because he’s calm, cool, and collected.
>> Say hello Johnny.
>> Hello, I don’t do caffeine, based on when I don’t want to but —
>> I hope everyone is doing well in your side of the pond and that you’re washing your hands, staying safe, doing social distance things, and wearing appropriate masking attire.
>> Even Orleans is — we are in a really very severe lockdown and yeah, we are — I can really feel the difference between lockdown one and lockdown three, so yeah. But actually everybody, I’m very grateful of the fact that everybody I love seems to be healthy and well.
>> Fantastic. That’s wonderful to hear. So I think we’d like to start with a little bit of your story. I love your story. Would you mind sharing your journey into advocacy, working for digital equity, and authentic inclusion of ability alongside race, gender orientation, religion, and race and our social and corporate cultures. And a little bit about how you live with blindness and when you found out and all those other fun things.
>> Tell us who you are.
>> Who you really, really are. Tell me who you are and what you really, really are.
>> In less words, tell us who you are.
>> Thank you, John. Actually, I think our way of asking the question is exactly how I do it. I put about 17 questions in one. So who am I? Why don’t we start with, who am I? Well, you know, there’s lots of — aren’t there lots of labels and descriptions to describe all of us. I guess I’m anti-labeled in description, which is kind of my work and it is a real knot to where I came from. So I have a condition called ocular albinism. I’m 49 years old now. And I was born in 1971 and diagnosed probably six months after I was born. And my father, particularly who was a Johnny Cash fan, the song A Boy Named Sue really resonated with him because dad would always believe — he was an entrepreneur, a black sheep himself, did things differently. He just believed the world really wasn’t fair. And if you over-[inaudible] at a child, you’re not doing him any favors because the world is tough, and so your kids need to be tough.
>> True.
>> So this was all captured in the A Boy Named Sue. Don’t ask. But anyway. So he and mom agrees that they would try and see how I would cope if they sent me to a mainstream school and not divulge the fact that I had this condition, which I’m at the level of being registered blind. So I really went to school having not a clue that I was any different to any other child who had glasses and discovered that the level of my sight loss when I was 17. When dad, once again, the troublemaker decided to give me a driving lesson, which is quite ridiculous considering the level of vision I had. But he did it because he — did he believe that I could eventually drive? Did he want to keep the passion and the dream? But he knew I wanted to race cars and motorbikes. That I wanted to be a cowgirl. That I wanted to be Mowgli from The Jungle Book. I had all these big dreams. And I think he gave me that driving lesson. And suffice to say that triggered me finding out that I was actually registered blind, and that was my 17th birthday. And then I, from that moment on, at the time went, I have absolutely no idea what this is. I do not want to have a label of disability. I’ve done really well till I was 17. Why on earth would I be any different? And so I decided not to disclose it. And I hid it from everybody for 11 years until I went into the corporate world, was a management consultant with Accenture. And I stayed in my little closet until I have been with them two and a half years. And at the close of 1999, I’m 28 years old. I stumbled out of that closet and said, “Hello, my name is Caroline, and I don’t see very well.” And that has begun my journey to where I am today, which is 21 years ago where I am absolutely — I suppose, I’m obsessed, really obsessed, and passionate that we do not need to have the scale of disability exclusion that exists in our world. That part of the answer for this, or actually I believe really a huge part of this answer is business inclusion. That inclusive business creates inclusive societies. I believe the only way we can do that is to have inclusive leaders. I believe leaders make choices and those choices create culture. And frankly, I don’t think it’s about the technology, the products, the services, anything. It’s actually about the intention and the will and accountability of people to make change happen. And the scale of the community of us that exists, come on, like really, really, you cannot claim that you’re inclusive if you’re leaving off the disability community with a mother and a father is 72% of our global population.
>> Yes.
>> Okay.
>> You wonder why I fell in love with you.
>> [laughter] I’m a troublemaker. And I think to John’s point is, who am I? Well, I’m a troublemaker. I’m a rebel heart. I’m half introvert, half extrovert. I’m an entrepreneur, businesswoman —
>> With some amazing dreams, by the way.
>> Yeah —
>> Lots of dreams.
>> I have and by the way. I have achieved all of them.
>> Yes.
>> Extraordinary is I’ve achieved all of those dreams that I mentioned because I admitted that I couldn’t see, which I always think is the greatest oxymoron.
>> Spectacular.
>> Well, I think one of the things that we have in common is we know who we are. You know, I know what I know, and I know what I don’t know. I know what I can do and the word can’t doesn’t exist in my vocabulary. I just got to figure out a way to do it. I’ve always gotten that from you from the very first time we met.
>> I think for a while, when I came out of the closet, I fought my vision and I wanted to be the one who would win. And so I would, you know, if no was said, I would like, I would say, bring it on, you know. I like the caricature that I had created about being gritty, resilient. I can overcome everything. Now, I’ve actually come to peace with where I am. And it’s very different because I’m not fighting my eyesight anymore. I think I just finally came to some 360 level of acceptance going, you know what? Nobody will tell me what I can and can’t do. That I probably right now should not be holding the handlebars of a motorbike. It’s okay to sit behind somebody I trust on the motorbike and still have a magnificent ride. Yeah.
>> Or on the sidecar.
>> Yeah, or the sidecar [multiple speakers].
>> Yeah, Caroline. John and I bought a 1992 Soviet Union military-issued trike with a sidecar.
>> It’s called a Denpurr [phonetic].
>> Denpurr [phonetic], yeah. And we tool around town and we turn heads and we’re waiting for the day. It can actually carry three people because there’s a seat behind. And I’m trying to figure out a day when we can take Vaughn, underdog, in the sidecar, and the three of us just go out for a ride.
>> When we get the carburetors tuned, but —
>> No, but you know, and that’s the thing too is. I remember it was 2008 and I was challenged by students at the time to participate in a blindfold taxi derby where everybody else made believe they were blind. And I was actually blind. And it was exhilarating doing something that everybody in the world says a blind person could not do and do it with gusto. And it was just fantastic. And that’s something I think that I try to encourage for people who come behind me, whether it’s being born into the community or whether through some accident or diagnosis, they joined the disability community, is that your life doesn’t end, it just —
>> Changes.
>> — you know, it presents a whole different set of challenges. And every day is a challenge in life.
>> New game.
>> Yeah.
>> New game.
>> Yeah. I think it’s not the thing is like so, you know. Can you believe that I’m actually finally starting to write like a book? You know, I’m like, oh my God, I’m so not going to do this. But maybe it’s lockdown. Maybe it’s age. I don’t know. But one of the things I want to write in this book is we’re not defined by any one part of our lives, our success, our failures, our loves, our broken marriages, our disabilities, our sexuality, anything. We can’t be because if we’re defined by one thing, and if we hold that too tight, it limits kind of the chances we have for a bit of magic and growth. And so I think for me about my sight now, and it’s getting worse and it’s changing. I think that’s the whole point is just keep moving forward. You know, acquiring sight loss, acquiring any disability, death when somebody you love dies. I mean, we just got to keep going forward and the world changes. And it’s something very beautifully strange about, and I know it’s a cliche, so I’ll apologize for that. But when you come against this pain or disappointment or grief or heartbreak, you do find something amazing in yourself that you never knew you had.
>> Wow.
>> And that to me — wow. Like It just —
>> Yes. I agree with you. And you know, I lost my eyesight unexpectedly. I had no choice but to embrace it, there was no way of denying it. I went from 20/20 to total blindness, bit of an overachiever that way. And my mom would always say, I don’t know how you do this. I’d be curled up in a fetal position waiting for death. And I think your point is so well-made that I always hear people say, “Oh, you’re such an inspiration. Oh, I could never do what you do.” So I said, bull shit. You are dealt these cards and you are having to play them. You have no choice. Well, you do have a choice. You can choose to wallow in self-pity and pull the covers over your head and stay in bed. Or you can go out and redefine what is, or is not normal in your life and take life by the balls. It’s part of my nature. It is part of who I am. I don’t know that being — having a disability is for the faint of heart, but it does tap into your core beliefs and your inner strengths and faith about what is possible.
>> Well, you know, one of the things we haven’t seen each other or met each other since my dad passed away. I remember as a child thinking, one of the worst things that would ever happen is, you know, that man who six foot six, who would push me to be myself and the idea of him not being here in this world with me. I couldn’t imagine anything worse, right? And I covered — this is going to sound so strange, but in some ways, I thought that was one of the worst things that can happen. Someone that you love not being here anymore. You get through it. But what I’ve learned through going through the grief of him, actually The Valuable 500 would not have been born if it wasn’t for dad’s death.
>> Thanks, dad.
>> You know, and in a way I think if you’re able to own the pain and see the beauty in what can come out the other side and not try to push it away, but actually say, yeah, I am heartbroken. But somewhere in that heartbreak, you find something else. And I think that’s the same way we acquire illness or, you know, disability, or just things that happen in your life when like I’ve had a marriage that broke up and all of those things — I’m married again, by the way. Nobody is going to stop me from falling in love. Yeah. I also got married actually since I saw you.
>> Yeah, lots of has happened. I didn’t get the invitation. It must’ve fallen — it must have gotten lost in the mail.
>> So this is my point about being defined by you. Imagine the worst things in the world could happen, then you would never survive than we do.
>> Andone of the things I appreciate too, and I’ve come to really embrace is, I don’t need to be dis-labeled. You know, don’t dis my ability. I can do just about anything provided I have access to the tools that promote my ability, thereby allowing me to create infinite possibilities in my life. We have been preconditioned as a global society to look down on people who are “different” people who have a disability just can’t. We generalize that everybody in the disability community is in, you know, it depends on the garments, needing to be fed, and basically drooling and incompetent. That’s not to say that there aren’t people like that who need daily care and need our attention. But there are a significant number of us, hundreds of millions of people who just happen to have a disability and the brain and the capacity and the value, and we can’t overlook that anymore. We’ve got to really push to make sure that ability is celebrated and included. And I’ve looked at this pandemic and I have also looked at my trials and my tribulations with a bit of hope for a silver lining in everything. You know, people always said I was given lemons and I made lemonade, but my lemonade had a side of Titos or a heavy dose of vodka, whatever your preference is. And we just pushed through.
>> I’m so fascinated that we are still having this conversation about disability because it’s just part of the human fabric, the human experience. Every one of us would experience it. You talk about it being temporarily abled. You know, every one of us is going to experience disability at some point in our life. There are those of us who live like with our experience now. Disability doesn’t discriminate, another great cliche. I mean, it can happen to anybody at any point and any time. And the challenge for me is, look, if I was to ask everybody who wore glasses to take off their glasses right now. Let’s see how the world is designed for you because there is no way many people who wear glasses could function without their glasses. And that’s as simple as what we’re trying to do is, can we just not remove the barriers that stop all of us being able to be and reach our potential. And then find the tools that can help because it’s that simple. And once again, I keep going, but it’s the intention behind it. And believe me, when people who are in positions of power, privilege, and money experience disability either temporary or more, then things happen, and they change.
>> That’s exactly what’s going on in this pandemic. Whether it to do with the top 1% or the wealthy or the rich, people in general, all across the globe have been put at a disadvantage for having to do things remotely or use digital platforms to execute in life. And they’ve gotten a taste of, and a dose of what it’s like to be a person with a print disability who’s not able to navigate a computer keyboard or a mouse or read text hard printed copies of information in a “traditional manner.” Again, that silver lining that opportunity to create a sense of new defined normalcy on how we consume information. And I just see it as a huge opportunity. Again, and I’m curious, and we’ll get to it as we discuss The Valuable 500, how that — the pandemic has opened up opportunities for CEOs and global corporations to consider the valuable partnership afforded to them by becoming members of The Valuable 500.
>> Well, there’s two things, three actually. One is the pandemic has proved that gross inequity exists. We know that.
>> Yes.
>> That’s nothing new in saying that.
>> Right.
>> It also has proved a system can change like that business system can change. The system that they all told us it couldn’t, it’s proved that it can. And a lot of the tools that we use have been designed with people with disability, the disability community in mind. So, yeah and that’s the other one. The other thing is that it’s happened I think with this pandemic is, because it’s exposed to great inequity, and because we’ve seen things can change when we want to, there’s a lack of tolerance now. It’s like, there’s no more excuses that you will continue to consciously. And this is the point is consciously exclude. I think we’re entering, or we’re now in this decade, like the decade of disruption where the rule book around inclusion is being completely rewritten where we, you know, I’m well-known for being the troublemaker. Many of us are like, you know, the word we use is Intersectionality, but as far as I’m concerned is stop categorizing our humanity in the corporate world. When we pit our gender against our sexuality or sexuality against our race or race against our visibility. I mean, that’s it is apparent to me, it’s à la carte, it’s delusion. It’s insane. And so I think that’s what’s changed. And for The Valuable 500 in the last 24 hours, we have had 22 companies sign up.
[ Inaudible ]
>> Yeah.
>> Yeah. So what it’s proving is the business community, and more importantly, the business leaders are like, we need to get on top of this. We cannot be in a situation that we are reacting like we did because we didn’t plan, or we weren’t holistic in our view of inclusion. And look what happened with Black Lives Matter and how could in 2020 that still be the case? Well, it was and it is. And so now they know they need to not be reacting. They need to be really looking at humanity, employees and customers, and suppliers in a holistic way. And how can they plan their business systems to accommodate and be welcoming?
>> And that’s one of the things that I’ve noticed too, is if we look back over the progression of inclusion, at least here in the States with the civil rights movements, since the ’60s. If we just follow the pattern and we follow the successes and then fine-tune and be aware of the failures, the disability community is in its right to start exercising and benefiting from the civil rights movement. Because all too often, I think we’re relegated to “institutions.” I mean, up until the ’70s, blind people were put in institutions, and people with disabilities are still not considered viable. In the United States alone, we have 75% unemployment and underemployment rate of the 62 million people. And even if we take half of those people, 30 million are underemployed and unemployed. I think it’s high time that we open up a discussion and you’re doing it in spades with corporate America, with global corporations to take people who have a disability out of being tax independence. And just by the flick of a switch and an attention to some minor codes and or infrastructure or physical structures, allow them to become independent taxpayers, valued and appreciated. It improves mental well-being. It improves economies. It’s just the right thing to do for business, as well as any social conscious feelings you may have had, which have never worked. I don’t give a darn who you are, where you are, what point in history doing it, because it feels good to be socially conscious has not really moved that needle forward in my opinion.
>> I’m going to give you a really horrifying statistic, well two actually. One is that in planning for The Valuable 500, we discovered 90% of our companies came to be committed to diversity and inclusion —
>> Yes.
>> — and yet only 4% consider disability. So in my mind, that’s actually an inclusion delusion.
>> Yes.
>> The second one that has been —
>> Inclusion delusion, I love that. Go, yeah.
>> And then the second statistic that happened in 2020 was 3% of articles written about diversity and inclusion mentioned disability. This to me is extraordinary. It’s just extraordinary that we are still making the case for the cost of exclusion to our state, the cost of excluding a different lived experience that could drive innovation and growth in our business. The cost to a business, if it gets this wrong because of its demand. The pros of it it’s that the market is worth 8 trillion. The opportunity for you to differentiate your organization to attract the right talents disabled or not. I mean, we keep saying the same things in different ways. And what you really want to do is to say, actually, can we just stop? This isn’t about — business is about human beings. It’s not about machines. It’s not about walls. It’s not about floors. It’s about people. It’s about selling to people, employing people, supply by people. Okay. Now, we’re going to go into the land of AI, but right now, people. So what people? Does anybody ever sit back sometimes and go, what are we doing making the case for equity, for race, and for gender. And when we talk about gender diversity, what are we talking about? It’s so mad to me that we are still having to advocate for this. It’s just obvious.
>> I think it’s rooted in a mindset. Your dad and your mum were brilliant in the way they approached your condition. John’s parents were very proactive ’cause he has dyslexia. And they, you know, made it front and center discussion on how to manage it, instead of letting it manage him or having teachers and others label him a certain way. And I think if we take a look at the thousands of years, literally thousands of years that people with disabilities have been relegated to being considered untouchable, unworthy of God, unworthy of community participation. Look at the Torah, the Bible, the Koran, it speaks to that, very clearly and very intentionally. And then we layer in the fact that we have these emotions that guide us in everything that we do, fear and guilt. Fear, I think controls a lot of how people interact with those of us with a disability. Well, how do I talk to somebody in a wheelchair? How do I talk to a person who’s blind? What if I catch it? What if it happens to me? And then the guilt associated with not protecting our loved one from acquiring that condition, whether they’re born with it or there’s an accident. And for some reason, the subconscious or the unconscious thoughts about fear and guilt manage to take over everything whereby we don’t have a seat at the table. We don’t have a disability council, and we don’t have all of the other involvements and supports and perceived values of this particular minority group. And again, we’re at the intersectionality of all other groups. Everybody of age, of race, of agenda, of orientation, of religious persuasion will eventually become a member of our community. We don’t discriminate. We don’t discern. We just say, “Hey, come on in. It’s your turn.” And, I think we need to look at that and understand that psychosis that we live with at home. Nobody treats Caroline Casey different at home. But when she steps out into the real world, maybe not anymore. But they’ll look at you and say, “Oh, she’s blind. What do we have to do to make her feel better about herself?”
>> Or the other thing is sort of like with grief, it makes it so uncomfortable to facing and to hold somebody in our company, who’s in pain, you turn your head away. And I think sometimes that’s what disability is like, oh, I can’t fix it. I’m uncomfortable and don’t know what to do about it. I don’t want to hurt you. I don’t want to get it wrong. I really noticed with grief, the response to grief seems to be very similar to the response to disability, which means we know that it’s all going to be part of our life at some point, but we don’t want to face it. We don’t want to watch somebody else. What we imagine are in unbelievable pain with grief and then with disability is like you hear it a lot. You said it yourself, people go, I can’t believe that you’ve done this. You’re so inspirational because you have, and actually living through it. You just get on with it. You don’t have a choice. You’ve got to get on with it, you know. And for John, you know, I think we often sort of just glaze over dyslexia and it really makes me angry because there’s so many young kids in school who are not diagnosed, who were given labels of being stupid or inattentive or whatever else. And simply it is because we didn’t know how they learned and that they weren’t diagnosed. And that has to be an incredibly difficult and lonely place for people to be in. And yet look at when you hear people who have dyslexia — I’d love to hear what John is got to say about it. You know, they just have a whole different way of seeing and working around the world that we need to hear from. And to add the richness to our, you know, innovation or in the way they work. They say a lot of entrepreneurs are dyslexic. Do you know what I mean? Like, I don’t know. I would love to hear.
>> Yeah, it has its ups and downs. Yeah.
>> Yeah.
>> It’s fun in some ways. And it’s interesting in some ways and in other ways, it’s extremely frustrating.
>> But you know, I think in order for all of us to appreciate ability, we need to celebrate leaders in our community that aren’t just Helen Keller anymore. That isn’t just Stevie Wonder and or Ray Charles. I mean, Sir Richard Branson, I always reference him. I read up on how horribly he was treated through elementary school, high school, college, and in his career goals. And just for those of you who don’t know, our listeners who don’t know, he has dyslexia, severe dyslexia.
>> Yeah. He was one of our first Valuable 500.
>> I love that. I saw that. I was like, I was so pumped about that. And that’s somebody I want to shake that man’s hand one day. Boy, oh, boy, do I want to shake his hand. But I found that when we have examples of how people have overcome successfully and managed to be impactors of human condition, we start to normalize it and say, “It’s just the way, it’s the way I roll through life. It’s the way I read. It’s the way I see.” And it’s very important for us to celebrate those successes. So we have leaders to inspire us and aspire to be. In those instances, I consider people like him an inspiration because of his successes. Me, I just wake up every day and I live life. I play the cards I’m dealt. I don’t know how inspiring that is, but if I’ve inspired people, I want to know, what am I inspiring you to do? And in the corporate world, we are supposed to hire the cream at the crop. We want people who understand disruption and how to not follow the status quo. We want people who are proactively involved in meeting challenges head-on and overcoming them. People with disabilities do that every day they wake the hell up, especially if they live with John Hermus because he leaves shoes all over the place, and I’m tripping over them. It’s as simple as that. I just think people with dyslexia tend to be higher intellect because they’ve had to figure out workarounds. And Caroline, you know, being blind, when we’re using a computer platform, if we didn’t have a screen reader, there had to be workarounds or tools we had to use or tricks we had to incorporate into navigating a digital platform. And I think there’s a value in that that needs to be harnessed properly so that way people can excel at being their authentic selves based upon what their abilities are with the tools before us.
>> We forget, I know these are the old usual cliches, but you know, Richard Branson would say that his dyslexia was like a superpower. That he believes that that’s actually what has made him creative because he had to be creative and come up with solutions, so he would say that. That we keep overlooking the fact that some of the greatest innovations of our time, like I don’t know, text messaging for hearing impaired. It’s something we all commonly use. The remote control for visually impaired and blind people watching television. It’s a mainstream product. That lets just cut out the disability conversation for a second, and let’s just go back into this human-centered or universal design. And that is — I really hope that we are going to move from this concept of accessibility as being a niche and serving disabled people who need it, to something that’s normal and serving the broadest population that exists. And like if we don’t, once again, we shouldn’t have to make the case, but Apple is the first company in the world to trigger a trillion. Steve Jobs wasn’t about accessibility. Steve Jobs was about creating beautiful designs for everyone. Now, wouldn’t it be great if our world was designed that way? That we’re designing our world for the human beings, the 7 point whatever billion of us that exists, and everybody’s lived to experience that. Then if we designed it that way, then we wouldn’t have disability. We just have different ways of doing things because that’s what it would be, right?
>> That’s one of the things that we advocate for very staunchly at My Blind Spot, you know. We want to maximize the usability and functionality of the technologies. We want to create digital equity. We want equitable platforms. Those are terminologies that the financial industry understands, that corporate worlds understand. And when we maximize the investment in our technologies, and we reward. And this is something too that I found that corporations and I’m wondering if you have had any experience in this theory that I have where corporations are not all that excited about creating avenues to new markets, but they certainly have a hair up their ass about maintaining their market share. And if they take a look at their long-standing loyal consumer base and understand that, thanks to baby boomers aging into the disability community at an alarming rate. If they just maximize their technologies and improve the codes in a manner that rewards their loyal consumer base by accident, not by design, by accident they’ve opened themselves up to the 1.4 billion people in the world with the 2.3 billion friends and family from the disability community. And didn’t even have to do a significant lift to affect access for a new market and new revenue stream. Does that make sense?
>> Well, of course, it makes sense to me. I mean this is stuff that we eat for breakfast here I mean. [multiple speakers], like I’m just. As I said it a few minutes ago, I just can’t believe we’re having to make this case again [multiple speakers].
>> Yes, I agree with you.
>> Because it’s like really, like why are we trying to make the case for designing products, services in the society that fits the human needs?
>> So Caroline, would you mind explaining The Valuable 500 a little bit to me?
>> Well, The Valuable 500 was a live stream of a troublemaker honestly.
>> Nice.
>> I have been in this space for a long time.
>> I’m totally excited.
>> Yeah. Well, like disability business inclusion has been a passion of mine. I had been frustrated beyond belief that we hadn’t seen the accelerated change that is required. So, you know, having worked in disability business inclusion, the piece that had been missing in my mind was the jigsaw piece was leadership. And all of our work over the years has been really trying to get to CEOs because leaders make choices, and those choices create culture. And if we were to get the intention and the attention of CEOs, we could change something. I mean, we really could. So The Valuable 500, its core purpose was to break the leadership silence in disability business inclusion. It was to find a collective mass and in this case 500; 500 of the world’s most committed intentional CEOs and their brands to elevate the conversation of disability to the leadership level, the board level, become aware of what was going on in their business, make commitments to action and communicate those commitments to employees, and then for us to the rest of the world. And you think, okay, big deal. It’s a tick box. It is not a tick box exercise.
>> No.
>> And this is not about employment. When we talk about disability business inclusion, we are talking about business inclusion and disability business inclusion across the value chain. We launched this two years ago this week on the main stage of the World Economic Forum. Paul Polman is the ex-CEO of Unilever but he’s our chairperson. We had Richard Branson and Janet Riccio who has recently passed away, as our three founding valuable leaders. Now, as I came on to you, we have 413 companies that represents under 16 million employees, 56 sectors, 34 countries. I mean, 5 trillion in revenue. It’s huge.
>> Wow.
>> And so what are we going to do with that? Like, I mean, that’s what The Valuable 500 was to do, was just to break that silence of business leadership. And now because of the success, which is the really exciting piece and this incredible catalyzing community, we’ve designed a system transformation program for this community. And in phase two, which we launch in the next few months, we will work with each of our companies on how they individually, as a company can really move the dial at leadership level because that’s what we do at leadership level. And then collectively as a community, what can they change in the ecosystem that will drive the change? We want to radically shake up the business system and I’m not going to apologize for that.
>> No.
>> I don’t want to do something small. We want to do something big. it’s time. And if you’ve got 500 companies with that amount of employees, there’s no reason not to.
>> Well, see, this is the thing that you and I have in common. Many of my colleagues early on thought I was an angry elf. I was always upset about this, that or the other. And again, going back to what I was upset about, not that I was blind. I actually feel blessed, and I feel privileged to see the way that I do see because I’ve never seen more clearly as a blind person. But I’m angry at leadership for not taking all the regulations and all the opportunities that were there before I lost my eyesight to perfect them in a manner that allows our community to be elevated up to a position where they are valued by more than 500. And I think the conversations around infusing, authentic inclusion, specifically the authentic inclusion of ability into the DNA of corporate cultures from the boardroom to the mailroom and everywhere in between is what’s going to make the difference We are very much in support of The Valuable 500. And if all things go well, we’d like to see how we could with some of our clients, bring a few more into that fold so we can get closer to the 500. We are currently speaking with American Airlines and Jet Blue about signing the commitment to be members of The Valuable 500 because it’s just the right thing to do. And it is just not to say it to offend you, but it does check a number of boxes that have here to for it not been included in the area to check off inclusion. You know, we talk about diversity and inclusion, but it never really involve people with disabilities, and most corporations do something in the way of supporting the disability. They make donations to organizations that fund and support the ongoing disability, but they really don’t direct resources in a manner that empowers ability. Do you follow me?
>> Yeah. I mean, that’s what I was, you know, referring to before. It’s like disibility has been on sidelines of business and I often go, well, so I’m Irish and I’m a woman and I have a disability. So which part of me do you want to work with? Which part of me do you want to start with? Do you want to start with the blind part of me or do you want to start with the woman part of me, or what about my Irish ethnicity? We’re like which bit are we going for here?
>> As long as there’s a pint involved, we’re good.
>> Yeah. Well, [inaudible] just kind of like, but this is over now. COVID has put a nail in the coffin on this.
>> Yes.
>> It’s finished because you can’t un-know what we know. And we have seen, and we have heard, and we have witnessed, and we’ve experienced, you know, mainstream exclusion. We know that we have talked about non-resuscitation orders for people with disabilities. We know that some of these platforms that we’re using particularly for you and me, we can’t use them. I mean, I can’t do my job as well as I used to before COVID. When there’s presidential addresses, it was great. We could see disability being referred to when you had to see somebody using sign language interpreting. And like, these are things that should just be so normalized.
>> You know it’s happening; you know. And I think again, to your point, it goes back to leadership and —
>> So when you come back to that, also one of my big things is I choose not to be angry. I choose to say brilliant, well done and actually promote and shine the light on and say, “Wow, aren’t you amazing?” And sort of nearly create a positive competition and sort of let that speak for itself. Of course, people are frustrated. Of course, people are angry. Of course, people are overlooked. And gosh, the feeling of that is just, it’s so heavy. To see progress, I would prefer that — just saying from The Valuable 500 perspective, we’re not whitewashing anybody. Okay.
>> No.
>> Let’s be really clear about that. But we’re focusing on, please do more of that. You’re great when you do that. I would like to see more of that. And I actually can say, in The Valuable 500 when this is done, because we have so few places left now, you know, I’d say, we’re going to shut in the next three to four weeks. People are not going to look at who is on that list. They’re going to look at, who’s not.
>> Correct.
>> And I don’t have to be negative.
>> No.
>> It speaks for itself. So for those companies who aren’t on it, that was your choice. And there’s no reason that they couldn’t be there. You couldn’t say, oh, we didn’t know about you. Yeah. You did know about us.
>> Yeah, you did.
>> You did.
>> You know, and that’s one of the things too, that we have been wrestling with the proper time to launch and sort of fund something called the My Blind Spot Consumer Access Ability Rankings, the MBS CAR, where we positively celebrate those digital platforms that are usable and functional. And again, point out the leaders in the industry and not turn around and say, “Oh, we’re going to sue you because you’re not X, Y, and Z, but we’re going to applaud you because you are.” Accentuate the positive, eliminate the negative. And on that note, I’d love for you because I was very impressed with and proud of our client American Express. We both work with American Express for seeing their name front and center on The Valuable 500. Let’s celebrate some of the large corporations and some of the corporations that are in that list. And would you mind giving us some of the names of the corporations who have signed on to this global commitment?
>> Actually, I have a —
>> As I said —
>> Oh, you have it there?
>> I have a word cloud of logos. I could go through that. And then if you want to add more at the end, Caroline.
>> Go for it.
>> Do you mind? Go ahead, John.
>> No, go John.
>> I keep forgetting, he’s got sight and he’s got his computer [brief laughter].
>> I was about say, yeah.
>> And I’m just going to rattle off a bunch of the ones that I know. There’s Jaguar, Land Rover, Virgin, Dow, Verizon, Sainsbury.
>> Sainsbury.
>> Bank of England. IBM, Sony, Hilton, Fujitsu, Microsoft, Airbnb, BBC, Audi, MasterCard, American Express, and [inaudible].
>> Salesforce.
>> Salesforce is on there too.
>> Accenture, KPMG, Deloitte, EY, you know, I mean —
>> Lenovo, HP.
>> IBM.
>> HSBC, [inaudible] —
>> Citi.
>> Citibank. It’s impressive.
>> To be honest, we are talking about — hold on, we are talking about 413 companies so —
>> Yeah, there is a lot.
>> — there’s a lot in there, you know. For the beginning of this, people were like, yeah, yeah, like you’re crazy. There’s no way you’re going to make this happen. And now, well, we are making this happen. And you know, what you will see in the next few weeks really will be the scramble because this is, as I said, we were moving from campaign to a phase two, which is a community that’s going to change the system. We’ve just got a historical and I mean, historical, huge financial investment from a foundation to do this work, which is the biggest investment into disability business inclusion in the world. And that just shows it’s the right time. This is I think the right vehicle when you have this commitment and the CEOs have to be CEOs of companies that employ over a thousand people, we see that’s where the greatest gap is. Actually, some of the greatest work is done by small to medium-sized companies. So it’s very exciting. What I would say to anybody listening who’s connected to, I mean, we do have American headquartered companies, don’t get me wrong. But there’s some really interesting American names that are missing. And I think that’s a shame because America is part of our global system and it’s really worth going and checking out the website. But if anybody has any companies and they want to make connections to us, just get in touch and it’s www.thevaluable500.com.
>> Pre-pandemic, there wasn’t a sense of priority or urgency for this type of work. I think because as I mentioned before, most corporations throw donations and grants towards foundations that underwrite and empower the disability rather than directing resources to open up avenues of possibility for independence that promote our ability. It’s changing. And I think we need to ride that wave. I mean the Me Too Movement, The Black Lives Movement, it’s a time. It’s our time to really step up and stand on the shoulders of those who came before us to open up avenues of acceptance and inclusion without a doubt.
>> Yeah, I totally agree.
>> So, Caroline, would you mind explaining how a company might join the 500? Do they have to be invited or do they just go to your website and can they ask?
>> No, I mean, they can come every way. We really welcome any organization who comes to us. I mean, a lot of the time people make a connection. They introduce us to a decision-maker or leader or somebody that they know very well. We’ve had a lot of incoming organizations through our website, very sort of over the last few months. So we’re very agnostic how you come to us, we are very specific about the type of organization we are looking for. And that is an organization that has over a thousand employees as it is a private sector company. And we do not mind whether the company where it is on its maturity journey on disability business inclusion. It does not matter. What we want is your commitment and your intention to improve, to go on that journey, to learn, to collaborate, to share best practice. That’s all we care about because this is about joining a community that together are historically going to shake up the system. So, you know, you are very welcome, and I think maybe the real sense of excitement about what we can do together. I think if you’re a company that really wants to be part of the community they can do this together, then we’re very interested in talking to you.
>> So only because this was asked of me and I want it to be really crystal clear, what costs are involved in becoming a member of The Valuable 500?
>> That’s a great question. It’s a really good question. And I love that people ask this because I’m going to take two myths away. One is, this is not a charter. This is not a text box and it is not a pledge. This is about entering a community that’s going to drive system change, that’s number one. Secondly, it does not cost you anything. We are not going to chase you for membership fees. We do not want that, and we do not need that. To set up The Valuable 500 I remortgaged my home, Virgin Media and Omnicom came to help. It happened and believe me, we have survived on nothing. And I’ve got to say, I think that’s been partly our huge ability to deliver because we’d have to be lean and creative. But for the second phase, to be having these significant philanthropic investments means that we will not go down the same road that so many organizations have to, to survive, which is to charge people for membership fees or. And the reason we were so clear that this is what we wanted was because I don’t want money to be a reason not to be involved in this community, no money. So that really holds it up to business. So yeah, like why would you not go in? And then the last thing to say is, so we’re really clear. As I said, the foundation money will come. It comes from a Japanese foundation, but it is further supplemented by an iconic group of partners of which there will be 12. And those iconic partners are some of the biggest and best-known brand names in the world. And they will be giving their expertise, their creativity in our challenge to essentially create these solutions that we’ll be working on, but they also are financially investing. And that means they’re financially investing for the community of 500.
>> I love the fact that there is no cost involved outside of being socially conscious and doing what’s right for your brand and business bottom lines. You know, we’re about authentically about moving the needle forward to allow people with disabilities to be valued as consumers. And also, my hope is to be valued as staffers, employees, and top executives. And that’s one of the things that I was stumped by when I was asked — and I knew this already, but like, why does everything have to have a price tag to it in order to do the right thing? And I think that’s [multiple speakers].
>> Hold on, you know, I kind of pushed back on that too —
>> Go ahead.
>> — is I really believe they should be paying you for your expertise.
>> Yes.
>> But I’m not in the business of consultancy.
>> Correct.
>> But you should be paid.
>> Yeah.
>> Our job is saying, come into this community. And I would not ask a company to pay unless it’s valuable for them to pay.
>> Correct.
>> And so but they should be paying you because you have a depth of experience that should be valued. So it’s not that they shouldn’t have to pay for stuff. It’s just the right stuff. And this experience and consultancy you have to offer, they should be paying for, yeah.
>> Well, thank you for correcting that statement. I was more in talking about being part of an organization or a consciousness or an organization of like-minded individuals. I think there are too many agencies out there and organizations that create these membership platforms. And I’ve seen some of them fail at advocating for authentic inclusion and digital equity at an alarming rate and they’re supposed to be the leaders in the industry. You’re just pulling together a consciousness, a group of like-minded individuals who are committed to expanding what D&I used to be, the Diversity and Inclusion and it just opening the doors for people of ability to step in. And I think that’s fantastic. So I’m curious about something too, and it’s weird to ask you because for 17, 18 years of your life, you didn’t notice any difference in how a person who was blind was treated. And you mentioned before that you were registered. In the United States, there’s a terminology we use, legally blind. I don’t know if it’s the word registered, but there’s a visual acuity. Explain that.
>> That’s it.
>> Okay. Same thing. So now what changes, again, and following up on and celebrating the positive outcomes. What positive changes have you noticed as a member of the community over the past number of years that you can speak of?
>> I think I’m going to speak to one particular area. And for me, it’s the younger generation. I’m loving that the generation sort of in their 20s and younger speak to disability pride and speak to owning that. And I love the energy, the creativity, the voice, the beauty, the beauty of it. And when I was growing up, I never saw a Molly Burke. And now there’s a Molly Burke, you know. And there’s Sumaira Latif. I can go on about so many young women who are visually impaired or blind. I didn’t see them. I didn’t see them out being badass, fabulous young women, you know, and that to me is exciting. I love that we are now talking as I said about disability pride. I love that we’re not trying to change the word from disability to diffability or deferability. Look, come on, it’s a disability. We all have ability. And so it really annoys me when you go into the corporate world and are ables group and you’re going, well, what are you saying about the other people. They are not abled? So I’m like, you know, and I think this is just a new energy and it’s just got sauce in it. And it’s about rise and it’s just bold and it’s magnificent. And I think if I was growing up now, I mean, how different I wouldn’t — I hope I’ve hidden who I was because I could see what I could be in the people around me.
>> It’s interesting. I’m going to float a theory out there that I have because of the younger generation demanding at times a truly inclusive society. I mean, the LGBT question mark Q community has got so many variations on the theme right now because of the younger generation, not wanting to be labeled or wanting to expand consideration for the label they prefer to use. And then you’ve got the aging community of people that are joining this disability community and don’t want to lose control of, or sight of, or use of what they enjoyed. And I think there’s a perfect storm out there because people who are transitioning into the disability community and even individuals who have no disability at all are looking at inclusion very differently than they ever have before. And I think it’s a beautiful time to be a member of this community.
>> Well, I think it is a different experience now. I look on and go, wow, it’s really different. And by the way, that didn’t come out of nowhere.
>> Yeah.
>> There were a lot of shoulders of giants, that all of us have stood on. And if you look at Crip Camp and you see, I mean, I have to be honest. I love that movie. And you look at the world those young adults were in. I mean, this didn’t come from nowhere. We have been evolving and devolving. And I see the change accelerating, and that excites me. We’re seeing accelerated change because we have different tools in our hands than we had before. We can get information and we have social media, good or bad, that’s accelerating the change.
>> Yep. That’s one of the things I like to say. And John and I live it every day. I don’t want you to limit my challenges. I want you to challenge my limits and that’s made the difference. I mean, for the first time since I was 18, I go camping now. I have a kayak. We have tandem kayaks. We have bicycles. We have motorcycles. Jonathan has opened my eyes to all the things that are, you know, I’ve struggled with what can I do as a blind person? What kind of hobbies could I have? And I realized that the world is my oyster. I just have to decide what I want to do and I can do it. It’s a different time. I see what you’re saying. The evolution of becoming more participatory in things and not being fearful, because I think also our community needs to take ownership on challenging their limits and saying, “Okay, even though I was told, I can’t do this, I’m going to do it anyway.” Even at the coddling thing, we are speaking with a woman soon, a colleague of ours, Kristin Smedley, who had two children born with a visual impairment. She allowed her kids to run around, fight, fall, climb trees, and do everything. She didn’t limit their challenges. She said, “Okay, going to happen when you fall and get hurt.”
>> Well, I mean, my parents sent me on bicycles and roads. I mean, what were they doing? I mean, I shouldn’t probably be on roller blades on the pavement without knowing, I didn’t see very well. Yeah. So I don’t know if that strategy fits all children.
>> Correct.
>> And I have no right because I’m not a parent. I think different strategies for different children. And I think parents have to trust their instinct. But the one thing that I do encourage all of us is to ensure that we do not have low expectations of ourselves. I have a great friend who used to say to me, “Casey, you have the rage to live.” And I think what he was trying to say is that I don’t want my life to be the life that somebody else determines for me, vision-impaired or otherwise. I just want to try and live the life that I want, because that’s the only thing that my job is here on this planet. I am lucky enough to have a life. I’m here. I’ve had an extraordinary life, like lots of ups and downs. It has not been easy.
>> Oh, yeah.
>> But it’s just, you know, that beautiful Mary Oliver quote, “What will you do with your one wild and precious life?” Well, it’s live it. Live it my way, the best way that I can. Not blame anybody else for it not going my way. But just to try and work it out, how I can be the Caroline that I want to be right to the end.
>> It’s funny. I can’t help it running through my head the entire time you were just speaking was Auntie Mame, a quote from the play and the movie Mame is “Life is a smorgasbord and most poor suckers are starving to death.” My calling now is to make sure that the table is set with such an abundance of choices that people can’t help but look at life differently. It’s such a pleasure to have you in my life and to be friends and colleagues and looking to you for different ways to advance inclusion.
>> And as we wrap up, is there anything else you want to discuss in regards to inclusion?
>> I think, well, the only thing I guess, because we’re just both such personal people, I think that the big part of inclusion if we want to have it in the world, it really does begin with each and every one of us accepting who we are as individuals. And I’m not sure that we can ever create a world which is fully inclusive of everyone if we’re not going to be inclusive of ourselves. And for me, that really means about accepting who I am and forgiving myself for the stuff I didn’t do so good. For taking my good and my bads and owning who I am. And if I do that, then I think I’m much better set to really understand what full inclusion is. And if we all do that, then we can all understand full inclusion. And I think for me, I want to end the scarcity model approach that if I give to you, I take away from myself. And that’s right at the heart of the problems that exist around inclusion. That we say, if we give to one community will take away from the other, we don’t. Inclusion is all for everyone. And unfortunately, that’s the truth, or fortunately, that is it and it’s hard. It’s hard. Beautiful when it works.
>> And that’s where from a consulting standpoint, our consultancy talks about doing organizational audits because so many people are rooted in their line-item budgets. Again, accessibility and inclusion is a line item at the moment. It’s not just infused into the DNA of corporate culture. And analyzing where the resources are being spent and used will allow companies to reallocate those funds in a more impactful, meaningful way to advance the inclusion we’re working toward while doing the socially conscious thing of helping others in need. There is a need to divest and change the direction with which we use corporate executive sponsorship and corporate funding and grants and such like that to correct the barriers or take down those barriers that are in front of people with disabilities. To allow them to be independent and gainfully employed and choose a life that they want to live rather than being told what people expect them to do. On that note, what’s your husband’s name?
>> What’s my husband’s name? It’s Gar. So it’s the short for [inaudible], which is the Gaelic for Gerard. Yeah. And he is another badass entrepreneur. So we got two entrepreneurs in one house.
>> Nice.
>> Yeah.
>> It’s got some good [inaudible].
>> Power couple.
>> Power couple.
>> No. I just say we exhaust each other. We’re very different, thank gosh because I couldn’t live with another me. And he has two children who are both in their 30s, which is wonderful because we’re just — his son is just about to get married, which is very exciting.
>> Yea.
>> And then we also have two puppies.
>> And what are the puppies’ names?
>> Inky and Nathan.
>> Wonderful. Now, because when you told me you are married. I’m like, wait, I must have missed a whole bunch of things. And the memories of your dad are with you all the time. So I’m sure he’s over you watching and very proud of all the things he opened up in your world to allow you to feel good to do and empowered to do.
>> Yeah, I think he’d be really proud.
>> Yeah.
>> I think he’d be really proud that I didn’t give up.
>> So what lies ahead for Caroline Casey and The Valuable 500?
>> Well, what lies ahead for The Valuable 500 is to bring in the final companies into our community and launch phase two. And then with phase two, I mean, it’s an incredibly exciting journey for three years because we’re giving our community a three-year journey and that’s it. Yeah. I can’t wait for that, Honestly, I mean, to know that we have 500 and we’ve made that historic moment happen and then set them on this collective mission to change the system is very exciting. And then for me in all of that space, I feel very proud that we’re now growing a team. I appointed a CEO a year ago. I don’t believe movements campaigns should be around an individual and it feels so wonderful now to start extending the leadership of our community to our 500 CEOs, not to an Irish woman who is just over [multiple speakers]. Though I’m kind of moving back into the side, not gone but to the side. I have a lot of other projects and ideas that I am working on that are always back to the heart of what I believe in and I’m writing as I said which is really exciting. I have also got a product that I’m creating, which has got nothing to do with The Valuable 500, but everything to do with the crazy change stream that I am. And I think the big thing is I like my life to be — I’ve worked really hard at being in this place and being here and I’d like to stay here if that makes any sense. Meaning I don’t want to be when this pandemic, you know, the situation, I don’t want to go off running around the world and not being at home. I have genuinely loved being here and being near my family and my friends. And I’d like to be able to work differently and take the lessons from COVID. And I just think to have a more balanced life actually.
[ Music ]
>> Well, that was Caroline Casey, a definite mover and shaker. So blown away with what she’s done around the world. Just unbelievable. So if you want to learn more about Caroline Casey, or if you’d like to take time to investigate The Valuable 500, you can find out more about all of that at myblindspot.org
>> /accessabilityworks, or our email is podcast@myblindspot.org.
>> There you go. Listen to John, don’t listen to me. And we will have our podcast available on Apple, Spotify, or you can download it directly at myblindspot.org and you can follow us on Facebook, Twitter, LinkedIn.
>> At this point, you could probably just Google AccessAbility Works podcasts or search bar that into Twitter, Facebook, LinkedIn, whatever.
>> Yeah. And AccessAbility is spelled with an A, not an I. Playing with words. AccessAbility, not accessibility. So yeah, so let’s take a look at AccessAbility Works podcast and get back to us. If you have any interesting topics you’d like to see us discuss, or if you want to join us on a show sometime.
>> We are open to any and all.
>> Reasonable requests.
>> Reasonable requests, reasonable requests.
>> Yes. We’ll be looking forward to our next podcast coming out next month. We’re going to be interviewing and speaking with a friend and personal inspiration, John Kemp. John is the CEO of The Viscardi Center here in Albertson, New York, a school for youth and students with multiple abilities. And he’s just a remarkable presence. Again, to find us go to Apple, Spotify, or myblindspot.org and listen to AccessAbility Works podcast.
>> A podcast about the possibilities of accessibility for people with disabilities. I’m Jonathan Hermus.
>> And I’m Albert Rizzi. Thanks for listening.
[MUSIC ENDS]
[END OF TRANSCRIPT]
Return to the AccessAbility Podcast Page