Elliot Moss
Welcome to Jazz Shapers with me, Elliot Moss, bringing the shapers of the business world together with the musicians shaping jazz, soul and blues. My guest today is Caroline Casey, founder of The Valuable 500, a global organisation of 500 partners and companies and their CEOs working together to end disability exclusion. Despite being born with ocular albinism – a genetic condition causing severely limited vision – Caroline was raised as sighted and only discovered her eye condition aged seventeen. Worried about the perception of disability, Caroline went, as she said, “into the disability closet” for eleven years, keeping her condition a secret while studying archaeology, then becoming a management consultant and then eventually, sharing the truth. Dismayed by the business world’s failure to address disability inclusion and having established several initiatives aimed at tackling the issue, Caroline launched The Valuable 500 in 2019, committed to driving lasting change through business for the 1.3 billion people in the world with a disability. The Valuable 500 now represents 22 million employees in 41 countries across 64 industries, including the world's biggest brands and they’re working towards the world's first accountability summit in Tokyo in 2025. It’s great to have you here; you’ve winged your way around the world to make it. Tell me what The Valuable 500 is. Why are we having this conversation?
Caroline Casey
Well I’m definitely not your business; I think I’m just your troublemaker. Is that okay for me to say that? I’m a shaper, a trouble shaper. A trouble shaper, I like that.
Elliot Moss
I like… you can be a trouble shaper, yeah, let’s shape some trouble, that sounds good to me.
Caroline Casey
Yeah. So, The Valuable 500, I think the thing that’s most important to know about it, it made history and it broke the CEO silence around disability inclusion. We created it because of the disability exclusion crisis that is all around the world affecting essentially, 54% of our global population because you’ve got 1.3 billion people and a mother and a father. And to end that you need the most powerful force in the planet, right, and that’s business. What business includes and values, society will follow but disability has sat on the edges, it’s always been the poor cousin on the edge of business because I guess there’s always been a focus on a deficit model of disability, that there is something not right, that we’re, we’re not valuable and The Valuable 500 was there to drive system change, knowing the only way we could get business to the table is through their leadership and that’s why we’ve got 500 of the world’s most prominent, biggest CEOs to work together.
Elliot Moss
And really, this has been in the making, I would say, since you were born. Is that right, Caroline? I mean, we’ll talk a lot about those, there are some key moments in your life, the moments when you didn’t know that you had an issue with your sight…
Caroline Casey
You know, I think it’s…
Elliot Moss
And then you go on and on and I could go through each one but there’s, it must have started when this, this now woman in front of me, this child was born with a disability.
Caroline Casey
I think what has always been in me, and I say that as 52 year old woman with menopause…
Elliot Moss
A young person.
Caroline Casey
…and you know, when you go through life, you can see and you look back on it, there’s always been a very restless soul. I also am the daughter of two black sheep as well, my father was an entrepreneur and my mum was a lawyer, but of the very black sheep kind, and I think I’ve always had that spirit, that real restless spirit to try to make big things happen because I think when you feel a little different and you don’t fit in, but you don’t want to fit in, you want to still be who you are, that wildly different person, I think that’s always been in me and what I didn’t obviously know when I was younger is that my parents, when I had been diagnosed with ocular albinism at six months, they made the decision to send me to a mainstream school and bring me up as a sighted child so, I had no idea that I only have a half a foot vision so, for anybody who doesn’t understand, can you imagine putting a pair of glasses or sunglasses on and smearing Vaseline, that’s my world view and…
Elliot Moss
And there’s nothing you can do about that?
Caroline Casey
No. Ocular albinism is one of those, because it’s more than just your vision, like I’m very white, like I’m not just Irish white, I am luminescent white, which I used to get really, you know, teased about when I was at school and it was the reason that I didn’t wear a bikini until I was 31, it’s just like, so I have very white hair, very kind of translucent skin and you can’t fix it. Now I do have, like lots of people, short-sightedness and that’s why I wear glasses but that doesn’t fix my big, significant issue. But I, I just bumbled through like childhood I guess, I bumbled and you know bumped away and wasn’t picked on any significant sports team because I couldn’t see a ball, I constantly found myself talking to the wrong people and I knew I was different, I really did, I always had that sense there was something, do you know what I mean, but then again don’t all kids feel that way and it’s really, I guess growing up is really yard, you know. So, there’s always been a part of me and that has never changed and you can hear the emotion in my voice, I deeply want to create a world where we can all belong, in our own unique way, and give grace for difference you know so, collectively, we respect that difference but I don’t want people to fit in, no.
Elliot Moss
Let’s go back to that childhood and it was difficult and you didn’t know, as you said, that you had this. Aged seventeen, you find out. Is that a “wow, mum and dad, thank you for never putting me in a box and labelling me because I know you don’t like labels” or is that a “how could you not have told me?” moment?
Caroline Casey
It was none of those actually. You know, over the years people have always defined my story of my life by this moment, you know, or the moment I came out of the disability closet but you’ve got to remember I was a seventeen year old child in 1989, living in Dublin and my family was complicated, and I mean complicated beyond the sight loss, right. So, we had a very dysfunctional family. We had addiction and significant mental health and I don’t remember feeling either angry or grateful. What I will say is, having done a lot of work over the years, because you do when you come from families, I am so grateful for who I am in this moment, I am proud of who I am, I’m so proud of our family and the healing that we’ve done so, I wouldn’t change any of it. Would it have been easier? I don’t know, honestly, because look who I am here in this moment so, I just don’t know.
Elliot Moss
Impossible.
Caroline Casey
But I don’t remember. What I do remember thinking, and this is the absolute truth, because dad gave me a driving lesson for my seventeenth birthday and I was shocked that I didn’t get a puppy, so that’s, that was the only thing that really, was the only thing on my mind that day is, I didn’t get a puppy, even though I love the idea of racing cars and motorbikes because obviously I found out that day I was never going to drive.
Elliot Moss
I want to jump forward to the moment you went, you know your father passed and you were talking, and there was this conversation that basically said, you know, something around you’ve got to grab this, be authentic, do what you need to do, look deep inside in a way and you can tell me, I’m sure, in much more eloquent words what he, what he said but you made the leap out of management consultancy, you set this thing up, you know quite a long time later but around that time, again I look at journeys and I go, there’s been two decades, if it was in the making when you were born, it was in the making in your childhood and then there’s a moment when you go, “I’m not doing this anymore”, just talk to me about, again, that transition away from the world of management consultancy into you becoming an activist of sorts, before, way before The Valuable 500 was even a in your eye.
Caroline Casey
I mean it’s, thank you, because it’s, as a creator of something like this, it’s like everybody, it’s your latest thing, right, so they forget all the…
Elliot Moss
Twenty years of that.
Caroline Casey
All the stuff that led to the moment and I think it’s really, it’s really perceptive of you, I think The Valuable 500 in its idea actually began from the moment I came out, tumbled out of the disability closet in Accenture and…
Elliot Moss
What year was that?
Caroline Casey
That was in, oh here we go, 1999, October 1999.
Elliot Moss
So I’m thinking, that’s right, it’s roughly just over, it’s almost 25 years now.
Caroline Casey
It is, it, so this year will be my 25th birthday…
Elliot Moss
Congratulations for coming out the closet.
Caroline Casey
…of falling out of the closet. But so what that really did was, a few things practically, I was sent to a specialist by Accenture. The specialist told me I needed to take some time off because my eyes just needed to rebalance because I wasn’t asking for help. A warning sign for those of you who find it very difficult to ask for help. I damaged my vision and I was just really confused. It was a really hard time. I often talk about Maya Angelou, who I adore, and she would say, you know, “There’s no greater agony than an untold story inside you” and I think that’s really important to remember the agony of that, trying to be somebody that you’re not was the reason that the way I took time off was to fulfil one of my childhood ambitions, which was to be Mowgli from the Jungle Book, and so how I did that was I went to southern India and became an elephant handler for four and a half months and I mean proper, didn’t sit in a howdah, I trained hard. So, if you can imagine an Irish albino elephant handler, the press are like, “What?” and “Who?”
Elliot Moss
Is it a mahout? How do you…?
Caroline Casey
A mahout, yeah.
Elliot Moss
So you were the first woman, first female mahout from the West?
Caroline Casey
First western woman, yeah, yeah. And it was, you can imagine the press and then there was this whole thing about, “Well tell us about disability” and like I, I had no answers and because I am, you know I often say “Irish, catholic and guilty”, I didn’t do that trip just for myself because I couldn’t so I decided to do it for Blindness in India and we raised enough money for 6000 cataract operations and you’ve got, it was my first, first step into public speaking, fundraising and it’s like a could breathe, I can’t explain it, it was like, I didn’t think, it just came and that was really when I began but the big moment that connects to my dad moment, is that I wrote to loads of Irish companies, you know because National Geographic were kind of filming this thing and I was looking for sponsorship and they went, “You’re very inspiring but we don’t do disability” and that was in the year 2000 so, when I came off the elephant, that’s what I did, I decided I would work with business to end disability exclusion and I did it for many, many years and an awful lot of awards, a lot of success, a lot of stages nobody had ever done and loads of failure, like loads of it and actually that’s what led me to that moment in 2016 in October, when dad very, he was a really big man, he was like 6 foot 6 and size 15 feet, so he was big and I, we never thought he as going to die but he, he died fast and he pulled me into his arms before he, four days before he died and he had said to me, “Why won’t you do the big thing?” because he knew I’d always wanted to do a big campaign, like a big one, like, like really big, like you know Al Gore’s, ‘The Inconvenient Truth’, like I wanted to call it ‘The Uncomfortable Truth’ and get all the biggest business leaders in the world to listen to me and I just think, I just said, “Because dad I, I didn’t do as good as I thought” and then he just whispered in my ear, he said, “What did I teach you? Be yourself” because everyone else has taken but he used a lot of blue language and it was on his death. I think anger and rage come from grief but anger is good, bitterness is not and it was the fire that lit up the energy to make the impossible happen.
Elliot Moss
And stay with me to find out what the impossible has started to look like. That’s from my guest, Caroline Casey, founder of The Valuable 500, she’s back in a few more minutes. Right now we’re going to hear a taster from the Mishcon Academy Digital Sessions, they can be found on all the major podcast platforms. Mishcon de Reya’s Martha Averley and Matt Robinson talk about equality, diversity and inclusion with regards to recruitment and how employers can recruit in a fair but diverse way.
You can enjoy all our former Business Shapers on the Jazz Shapers podcast and you can hear this very programme again if you pop Jazz Shapers into your podcast platform of choice. My guest today is Caroline Casey, founder of The Valuable 500, a global organisation of 500 partners and companies and their CEOs working to end disability exclusion. So many poignant things that you said about, you know, what your, what your dad said. You create this thing called The Valuable 500 and it is an advocacy organisation, right, that’s what you’d have to do but it’s also an action organisation. So there’s you, this incredibly powerful, from the heart, from the head, badass – I’m just going to say it – person in front of me, you know, I think you do a bit more than shape, you might be, as you said, a wrecking ball of good quality. You’re doing all these things and you’re saying things and you’re touching people – Caroline, you’ve touched me already, I’m sure you’re touching people listening – but you’ve got to make stuff happen.
Caroline Casey
Yeah.
Elliot Moss
There’s one thing motivating and inspiring and there’s another thing delivery action. How have you set this organisation up to do both?
Caroline Casey
Like with anything, it was never, it’s never a plan with me. I’m actually, if I say this, I hope people aren’t going to think I’m an egotist but I think people often hear me speak and they don’t hear that I have strategic capability and so it’s really important to know that The Valuable 500 and how you make something happen has two very strong elements to it. It’s the heart and the spirit of who we are as humans because when you’re trying to, to create a moment that connects people and engages them, you’ve to use your heart and your spirit, right? But that’s not enough, you’ve got to have concrete action and data and accountability and I think it was something quite magical because when you’ve got those two extremes and they meet in the middle, like that’s, it’s like that’s the magic, right, so you couldn’t, you galvanise people through heart but you follow up asking them to do something that they can stand by and be accountable and so to create The Valuable 500, it was the CEO who had to give us a photograph of themselves and sign it, along with their personal accountability for a commitment they had made at board level and we posted that on our website. So to build that was incredible like, it was, you know, we, we’re the second biggest business partnership in the world after UN Global Compact. Nothing like us exists and we launched on the main stage of the World Economic Forum in Davos, where nobody had been, like nobody. Who were we to think of that? But if you’re going to do something big, you’ve got to fight to the bitter end until your knuckles are red and be the chameleon that you need to be to find a way to make it happen and so when we made it happen, then I thought I was going off to Barbados and going, “There you go, dad, right, off we go and I’m finished” but everybody was like, “no, there’s something here, you’ve got to do more” and now what we’re doing is probably even harder than the creation of The Valuable 500 because we have put a date in the sand, which is the 3rd December 2025 and we’ve got a location, it’s Tokyo and we are calling that SYNC25 and we’re getting all our Valuable 500 companies to do three synchronised, collective actions to turn up. So, we don’t want their money, we want their accountability, we want their data and we want their commitment for system change and so there’s no point, no point getting people to promise without proving and that’s what we’re doing, and I’m terrified, for good, you know, it’s sort of back to being scared again.
Elliot Moss
You talked about fear, scared and that’s adrenaline and that’s a combination of, of course I’m going to do it but quite rightly, this is a, you know, ridiculously big thing that I’m trying to do and therefore you would be inhuman, and you’re an emotional person so you would be inhuman if you didn’t have those feelings, but every day, Caroline, you wake up, there are, in my head, 22 million people in the stadium, there’s a further 1.4 billion or whatever it is, plus all the mums and dads looking after those people, how do you deal with that? How do you deal with that sense of responsibility and still, and not get paralysed by it and not get fearful to the point where you just can’t think? What’s your secret to ensuring that you’re onto the next thing and you’re going to go big with the next person and you’ve never seen this before, ta da.
Caroline Casey
Gosh, that’s a bit, that’s quite a big question, there’s a few answers in there. The first thing is I, I now realise having done a lot of work, it’s not what I do but it’s, it’s how I live my life and that I am loveable enough even if I don’t do SYNC25, so there’s a really big part of anybody I think who is a shaper, a troublemaker, an entrepreneur, there is always a personal story that drives that fuel to, to be something, to be something valuable enough and that was very much me. The second thing I think is really important to remember is, we can’t do this on our own and even if you think about how we’re getting our 500 companies to work like, like a perfect orchestra, right, you know that each company plays its own instrument but you know the way when they tune up, it’s like noise that wrecks your head, right but when they work and there’s a conductor, it’s just beautiful, it’s like watching a murmuration of birds in the sky and that’s we want is to multiply the effect of one company 500 times by doing something with us and that’s me too, like, just because I’m here in front of the mic, don’t think I’ve did this all on my own, yes, there were stages, my husband I had to remortgage a house and I would, I had literally no food but we had teams of people, teams who are currently with The Valuable 500 team and before or so many people who took risks on us and companies so that’s been really important. The other thing that I think probably. The other thing that I think probably is more important than anything is every now and again I see somebody who out of the blue might have heard me speak or I did something, I don’t know like years ago and they say, “You’ve no idea what that meant” and like that’s a big deal, like you realise that every single one of us, you don’t have to be Richard Branson to make really good things happen, right. It’s that you, we all have impact on each other and so, whenever you, whenever I feel it’s too big or I’m too tired, it’s about remembering why we do this and then also knowing where my role is in it and I’m not the CEO of The Valuable 500, that’s really important. I do certain things really well and I’m really bad at doing other things and there is a tattoo on my right wrist with the word ‘Truth’ and that is the truth, is you can’t be everything to everybody always and that’s a great ah ha, and that came at fifty so, yeah, thrilled for that.
Elliot Moss
Stay with me for my final chat with Caroline and we’ve got some music from Alice Russell, that’s in just a moment, don’t go anywhere.
Caroline Casey is my Business Shaper just for a few more minutes. So, I’ve got in my head Caroline, and of course you’re in front of me as well, but there’s this, there’s this kind of hellraiser for good, right, and that’s you and you’ve, despite all the things that may have stopped you being here right now, in this moment, talking about truth and talking about global movements and 500 this and 2 billion that, I mean it’s, it’s crazy. What does tomorrow look like? What does the next phase look like? You do your 2025 thing, it’s going to be amazing, I’m telling you now, there’s going to be global coverage, you’re going to have some huge stars, some huge names from the world of business and politics and culture and I’m sure of all of it and there will be real change. Where does Caroline go after that? What’s going to be confronting her? What are the things you’re worried about? Is it the same old? Are these just going to be prejudices and practicalities that need addressing or is there something you’re, you’re thinking in your head, “and then there’s this”?
Caroline Casey
Oh my gosh, there’s a few things. I’m not a one trick pony. I, you know, one of the things that I have in me is, I am that dangerous dreamer, I do, I like making big things happen, I love bringing people together so, there are several kind of ideas that I’ve been working on in parallel to this and they all perfectly support each other. One of them has Dolly Parton somewhere in there. Dolly, my dad loved Dolly Parton. And so I do believe in big moments. Where next is I realised only three weeks ago, when I was saying, in island called Patmos in Greece, in a fisherman’s hut and it’s very basic and I stayed there on my own, for somebody who is very low vision, I was realising that it’s time, I spent my life doing extraordinary things because I was so frightened to face I couldn’t do the ordinary, and I did it, I did all the small things, I even rented an e-bike, which is totally illegal okay, I just need to tell you what it was like having wings, I had the best time ever.
Elliot Moss
I won’t tell anyone, it’s fine.
Caroline Casey
And it was amazing, and I remember just feeling I’m the most content I have ever been and that’s wild, like that is so wild, just to feel that way, safe in my own skin and if I can just work to continue that, because I hope I’ll be a better leader, I have incredible family, I’m a bonus granny, which is amazing – like, a bonus granny is like a step-granny, for those people who don’t know that – and that brings a whole new feeling into your life and I just want to, I think I want to not struggle as much anymore, I’ve always been a wounded warrior, like gritting my teeth and fighting against it. What would it be like to allow, allow all of that happen and take all the lessons that you’ve learned and like, as I, like Rumi and I don’t know if you know Rumi but Rumi’s quote which is so beautiful, it’s like “Yesterday, I thought I was clever, I went to change the world. And today, I’m wise because I’m changing myself.” So, I just quite like the journey that I’ve finally found myself on, my journey, my story, my pen. Yeah, I love just dancing around in the kitchen with my husband thinking just how good it is to be here.
Elliot Moss
It’s been such a pleasure talking to you, really, and don’t completely lose the grit in the fight because that’s quite useful.
Caroline Casey
That will never go. It will never, ever go.
Elliot Moss
No. I know and I’m half joking but like, the work you do is fabulous, absolutely fabulous. Just before I let you disappear to go off and be ordinary and relax and dance around in the kitchen again, and you should do that every day, we all should, what’s your song choice and why have you chosen it?
Caroline Casey
Well, music is a huge part of my life but there is no way I could give any other song than from the Jungle Book. That movie changed my life with an elephant but the song is I’m the King of the Swingers.
Elliot Moss
The absolutely brilliant I Wanna Be Like You from Bruce Reitherman, Louis Prima and Phil Harris. The song choice of my Business Shaper today, Caroline Casey. She talked about being a restless soul. If you didn’t sense her restlessness, you probably just missed listening to her for the last hour. “Why won’t you do the big thing?”, her father asked of her and boy, has she gone and done ‘The big thing’. The heart and the spirit, they’re great but they’re not enough, you’ve got to combine it with concrete action, data and accountability. What a brilliant recipe for business but also for this world of where business meets advocacy. And finally, a really critical point and true of anyone in any business but really in this movement as well called The Valuable 500, we can’t do this alone. Fantastic stuff. That’s it from Jazz Shapers, have a lovely weekend.
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