Episodes

She Didn’t Know She Was Blind

The Be My Eyes Podcast
May 5, 2020

What’s it like to hide your blindness from the world? Or not even know you’re blind in the first place? Caroline Casey was in denial for the first 28 years of her life. Her parents never told her she was legally blind, and by the time she got into the working world, she didn’t know how to be open about it. Holding back such an integral part of who you are can mess you up, and finally Caroline broke, realizing that it wasn’t worth it anymore. The funny thing is, that’s when her life really got good. Caroline chatted with us about her childhood, her work, and her new initiative to get 500 of the world’s most powerful CEOs to sign a commitment to include disability in their business agenda.

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Episode Transcript

Will Butler:

This is the Be My Eyes podcast. I'm Will Butler. How can you be blind and not know it? Caroline Casey could tell you. Caroline was born legally blind, but didn't know it until she was 17 years old. Her parents decided to raise her as sighted. Growing up in Dublin and being a very high ambition student, Caroline went on to get a high-powered consulting job at Accenture and stayed in the closet about her blindness from age 17 to 28. Spoiler alert. It was exhausting. She couldn't keep it up. Now that she's out about her blindness, she's changing the world from the top down. Here's our interview with Caroline Casey.

Caroline Casey:

Okay. Can I admit something? I am now calling myself, so I went from a global activist to a house anarchist and a digital introvert. That is what I am. I need to own it. Well, this is what's going on with me. I'm like, "I'm a digital introvert. I don't like this shit." I never did and I really don't. So help me out. I'm exhausted by it all.

Will Butler:

Is it just the, what do they call it? Zoom fatigue?

Caroline Casey:

Well, they call it Zoom fatigue. I'm calling is, I'm a digital introvert and I have a whole heap of empathy now, though I might've academically understood how exhausting it is for introverts to survive in an extroverted world, I now have true empathy and going, "No, I don't like the digital experience." I don't really like it. No.

Will Butler:

Yeah. I have a theory that everyone is trying to achieve that human connection that you get from actually being in the room with someone.

Caroline Casey:

I agree.

Will Butler:

But digital gets us 99% of the way there. It scratches, but it just doesn't quite scratch the itch that is human. You know what I mean?

Caroline Casey:

It's the yearning. It's the yearning.

Will Butler:

It's still a screen. It's still zeroes and ones.

Caroline Casey:

You see, because I think the connection is about energy and obviously for those of us who have vision impairments, I think we really have, I'm going to just talk about myself for a second, is that my way of seeing has been energy. It's been reaching out. It's physical. I have never been the best at transferring into the digital experience and making my life easier for me and for those around me. I've just always gone with the energetic feeling, and so nothing... I've really felt amputated for the first few weeks. I was like, "Aaaah." I was going off hugging trees. I was like, "God, I just desperately need to touch something."

Will Butler:

Yeah. And there's so much anxiety around touching anything, right?

Caroline Casey:

Horrible.

Will Butler:

Especially out in public. I don't know about you, but I get disoriented. I'm also legally blind. Do you get disoriented when you wear the mask?

Caroline Casey:

Oh my God. Thank you for saying it. I totally do. I am, because... Do you wear glasses?

Will Butler:

Yeah. Mm-hmm (affirmative).

Caroline Casey:

Okay. So I wear glasses some of the time, not that, by the way, my glasses improve my vision by any degree. It's just more that they keep the strain off. So when I put the blooming mask on, I steam up. And then even when my glasses are off-

Will Butler:

Yeah. Same.

Caroline Casey:

I totally know what you mean because maybe we-

Will Butler:

It's hard to explain.

Caroline Casey:

Yeah, right? It's so difficult.

Will Butler:

It's not rational because it's not covering your ears-

Caroline Casey:

No. No.

Will Butler:

And I think maybe it's your nose.

Caroline Casey:

Do you think it's our balance? So that's a good point. Maybe because the mask is hanging off our ears and then there's the smell thing. I don't know. But I definitely feel more unbalanced and very disorientated. I completely understand what you're saying. Totally.

Will Butler:

Yeah. Yeah. I don't really enjoy going out, walking around, taking walks or anything anymore because I'm so disoriented by that.

Caroline Casey:

Well, I'm breaking a rule, okay? If I don't get out, I'll go mad. I'm living with my husband here in a house and his daughter. She's 31 and she's a fitness trainer and everything, so that's great. We can jump around inside. And we have a friendship. We are good and we have taken this situation of isolation very seriously because my brother was critically ill with COVID. A 41-year-old, super healthy, super fit human being. So we've taken this seriously, except I was like, "If I don't get outside and run, I'll go mad."

Caroline Casey:

I have a sighted guide trainer who I've run marathons with and she's just up the road from us and both houses have been isolating quite significantly. And now, I went out with a run with her. So I have this elastic thing around my waist and then she has this cord, so it's not like what we used to do with marathon and she runs six, no, it's literally eight feet ahead of me. And that's how we run. And that gives me freedom because it's the only way I can do it. And we don't do it with a mask because I couldn't. I wouldn't be able to.

Will Butler:

Yeah, I mean it's really tough because on one hand it's like we have to all just be super diligent and follow as many rules as we possibly can. But we also have to, everyone needs to figure out their own way to do this and stay sane and maintain their mental health and we can't judge each other. We have to just support each other in being as safe as possible. Right?

Caroline Casey:

I agree with you. I totally do.

Will Butler:

Yeah. Yeah, totally. Well, I'm so excited to be chatting with you. I have a whole bunch of stuff I want to talk about. So I mean, we're recording. We can just dive in. Caroline. Is Caroline or Carolyn?

Caroline Casey:

Thank you for asking. Caroline.

Will Butler:

Caroline.

Caroline Casey:

I know in America it's always Carolyn, but I'm Caroline and I'm very Caroline. Yeah.

Will Butler:

Oh, what's the song? Sweet Caroline?

Caroline Casey:

Yeah. Oh yeah. Which I believe Neil Diamond changed because "hands touching hands" had to be changed.

Will Butler:

Oh yeah. Yeah. Sweet. It's not Carolyn. It's Caroline.

Caroline Casey:

It's Caroline.

Will Butler:

Names are important. You call someone the wrong name [crosstalk 00:06:26]

Caroline Casey:

Well, I'm actually mainly called Casey. So my surname's Casey and I was such a tomboy. I was known as Casey more than Caroline. I'm called Caroline if I'm in trouble.

Will Butler:

Right, right. I'm going to save us a little bit of time and just say if you haven't watched Caroline's TED Talk, go do that. Maybe even go do that first before listening to this interview because it's obviously, it was a huge moment for you and it was an incredible story that you got to tell and we'll get into some of the details of it, but we don't have to rehash that on the podcast. For those that don't know, you are registered blind, but I want to take you through your childhood and understand a little bit what it was like growing up for you as a kid because you didn't think of yourself as blind, right?

Caroline Casey:

Well, I didn't know I was.

Will Butler:

Right.

Caroline Casey:

So I think that's what's really important. I often find that this journey to sight loss or low vision, I mean, it's being... I didn't find out about it so I didn't become aware. I was born with ocular albinism. It was diagnosed apparently at six months. My parents made a decision to bring me up as a sighted child and send me to a normal mainstream school and not discuss with me the fact that I had such low vision. I was severely visually impaired, registered blind. I found out by accident when I was 17 and I denied it. I didn't deal with it. I went into the closet for 11 years. I came out of the closet at 28 and since then I've been on a journey of acceptance. So that's my road to vision impairment.

Will Butler:

Okay. So let's rewind. You're diagnosed at six months with ocular albinism and for reasons we can get into your parents decide, we're just going to raise her... You're the oldest?

Caroline Casey:

Yeah. I'm exactly, I'm their oldest. Yup.

Will Butler:

So what was childhood like? You're growing up in Ireland, right?

Caroline Casey:

Yeah, I'm Dublin. So Dublin, capital of Ireland. Both my parents are from Dublin. My dad was an entrepreneur, a business entrepreneur. He was always an outlier. He was the black sheep. He never did what he was told and had a passion for nature. I mean, total passion for nature. And then my mom, she was a lawyer and then she worked at home bringing us up. She was passionate about music and dance. So we grew up with the radio always on and the screeching sound of opera, which I never loved. And she always had this incredible way of making a dull situation brighter, you know? And I don't know, she just had that flair about her. So I'm a combination of both my parents in personality. They actually didn't get on super well. They didn't have the easiest marriage.

Caroline Casey:

They stuck together. But mom was also an outlier and she was also very much an individual. They're quite eccentric, too, and very brave. My parents were very brave people, but also my mom was very ill from probably from the age of 11 for me until the age of 17 so yeah, I had a very interesting childhood. I think sometimes people believe I lived in a Waltons existence. I mean, I certainly didn't.

Will Butler:

Was it a mix of working class industrial and more academica because your father was-

Caroline Casey:

No. I had the luxury and I am so grateful that I had the most extraordinary education. I'm very lucky. Though my father was an entrepreneur and I have to say, money was incredibly tight in the '80s. It was so hard. I mean, I really remember some very, very dark times, very dark times, which have made all of the three children very resilient and very mindful.

Caroline Casey:

We can survive on very little, which is just as well since I've the campaign for disability business inclusion. No, it was more that my dad's choice of career. I mean, jeepers. We had so little money for so long. But mom and dad came from, both of their parents came from accountancy and lawyer backgrounds. So it a was weird blend. Actually, I often think that my life is determined by half belonging, half not belonging. Do you know what I mean? I'm not completely blind. I'm severely visually impaired. So I'm not in one or the other club. Do you know? My grandparents had these incredibly great careers and yet we were impoverished on the outside for many years until my dad's business sold and it was a success. I often feel like I'm always never fully in one club.

Will Butler:

Yeah, yeah. The business that your father sold was etching on metal work or something like that.

Caroline Casey:

It was called Industrial Print and it was set up in 1979, the year my brother was born and he's the third child, and it was a silk screen printing. So it wasn't on paper. It was on metals and anything other than paper. So I remember the first thing my dad would have been printing was the dials of clocks. Do you know, the clock dials. As young children he would bring home what they call decals. So you have the dial of a clock and you'd have to punch out the hole in the middle where the handles go and we'd have to cut out them and pack them. So that was his first thing. Clock dials was his first thing and then it moved on to really big things like printing, remember the Macintosh Apple? The colorful rainbow Apple that went on computers.

Will Butler:

Mm-hmm (affirmative). Yeah.

Caroline Casey:

He did that. And he printed on metals for Thermo King, which is the freezing company. So yeah, it started with clock dials and then up to the other things.

Will Butler:

And I think I read that you were also into drawing and [crosstalk 00:13:23] copying and whatnot.

Caroline Casey:

Oh my gosh, you've done your research about me very well.

Will Butler:

Yeah. Well, I wanted to talk about being visual, right?

Caroline Casey:

Yeah, thank you for asking. It's nice.

Will Butler:

Because I think a lot of people don't understand that blind people, quote-unquote, can still be visual, right?

Caroline Casey:

Thank you. Gosh, this is so much better conversation that most of them. Yes, I was. And actually we had just had a conversation about this a few days ago with my husband's daughter who is really trying to understand what I can see and what I can't see. Right? Because I am obsessed with color and I am obsessed with design and I loved copy drawing. Actually, my first stint at entrepreneurship was I used to copy draw cartoons from Disney character movies onto the walls of [inaudible 00:14:12] or children's bedrooms. Another job when I was 14 years old with my cousin, we used to paint horse jumps, different color horse jumps and our company was called Ruchel, but I learned a lot of that from working on my father's factory floor when I was doing quality assurance about the Pantone grading of the ink and the alignment, which is really hard for people to understand what somebody with such low vision, how I could do that.

Caroline Casey:

And to this day I still don't probably understand, but just to explain, it's something that's carried through all my life because my husband and I have just finished building a house and the builder was... He just could not understand that I could call something a millimeter out or a shade of a color that was just wrong. And my husband's theory on it is it just doesn't feel right. He thinks it doesn't feel right to me because he knows I don't see it. But every time I called it I was right and the builders were wrong. So was that my dad's training? Is that energy? I don't know, but I'm deeply visual but I can't see very well.

Will Butler:

I've had blind friends and mentors and people in the past say like, "Yeah, I'm blind, but I'm also consider myself highly visual." And that really, really stuck with me as a young person who myself, I became legally blind around age 18, 19 and didn't have that, didn't think of myself as blind until my twenties so hearing that in my early twenties, hearing someone say I'm highly visual, really hit me. And I think a lot of our listeners are blind or visually impaired. So helping people to feel comfortable with the idea of being visual while also being blind, I think is important for our purposes. And so I wanted to be sure to explore that with you a bit.

Caroline Casey:

Can I just say I really appreciate you asking me that because it's funny because this conversation we've been having at home, I don't know about any other listeners out there, but I sometimes find being visually impaired and maybe you experienced this, I'm nearly having to justify what I see all the time. And I have to be honest, I get so tired because they'll say, "But if you can see that, why can't you see that?" And I'm like, "Because I can't." "But I don't understand because you say you're visually impaired, but you can see that," and I'm going, "But because I can." And I find it's a very tiring part. It's also quite emotional. I'm older now so I don't get so frustrated as I used to, but I am visual and I really am visual and I am really visually impaired.

Will Butler:

Yeah. Understanding that is also helpful in understanding this, what many people consider to be a strange phenomenon, of not considering yourself blind or not knowing you were blind quote-unquote. Because of course you felt normal, you were having visual experiences just like everyone else, right?

Caroline Casey:

Exactly.

Will Butler:

They were just different than what every else was.

Caroline Casey:

I just didn't know they were different. Nobody... How was I... You must remember, I didn't know what I saw was different and therefore if there's no reasoning or context, you're right, I was having my visual experience.

Will Butler:

Right? Yeah. So you're growing up in the UK, registered blind.

Caroline Casey:

In Ireland. Dublin.

Will Butler:

In Ireland. Does Ireland use the registered blind term the same as the UK?

Caroline Casey:

You know, it's interesting, isn't it? I'm 48 years old now and this terminology has changed so many times. So vision impairment, visually impaired, vision impaired, severely vision impaired, registered blind, legally blind. So we would say registered blind. In the UK you say registered severely, visually impaired. That's my understanding.

Will Butler:

Really? Yeah, because we're a global company, I just try to use as many different terms as possible to try to cover everything because there's no correct term. Right?

Caroline Casey:

But this is about the justification again, so the justification to how... So when you say to somebody, "I have severe low vision" or "I'm severely visually impaired," they just think about somebody who wears glasses. Okay? So in a way to try and explain the difference between somebody who's wearing glasses and you say registered blind. They're like, "Okay, that sounds serious." But then you have to go through the justification. "Oh, but you don't look registered blind." Jeepers. I'm exhausted. Could somebody give us...

Will Butler:

Right. You're growing up registered blind, but you don't necessarily know that because your parents have decided to raise you the same as everyone else. But I wanted to dig in a little bit to ask some of the questions that people probably often wonder. I'm thinking about my childhood growing up with some degree of vision impairment, but not really identifying with it. Didn't you have instances where you would have a run in with a kid or not see something that the kids saw and then they would tease you? Say like, "What are you, blind?" Something like that. And you'd come home crying and say, "Mom, Dad, someone called me blind at school." Can you walk me through how something like that would play out and how it would lead into you feeling still unaware that you had a very significantly different level of eyesight.

Caroline Casey:

So there was a name I used to be called in school called shaky eyes because I've got nystagmus so my eyes flicker all the time and I didn't really think very much of that. I couldn't see the blackboard. This is me [inaudible 00:20:32] at my age. I just thought, because there was lots of kids who wear glasses. Do you know? That I just had normal shortsightedness so I thought I was just one of them with bad vision. Nobody really wants me on their team for anything, like hitting a ball, because I was rubbish. I mean, I couldn't play the basketballs and netballs, the hockey. And I love sports, but I just had no hand eye coordination. I definitely... There's a tiny thing. There's a few times, I was bullied by the way in school too, and I was bullied because I was sitting in the front row.

Caroline Casey:

Because I couldn't see the blackboard, once again, not really understanding that I couldn't see the blackboard and I was called the teacher's pet. And so then I just, "Well, screw that. I'm not sitting in the front," so I scooted off the back. And then the other part of my thing that I remember is feeling really awkward walking into rooms and not being able to see people's faces. Right? Now I know where my people pleasing nature has come from. I know now why I reach out to hug somebody first. Because I don't want anybody to feel as awkward and so lacking in confidence as I used to feel because I couldn't see, right?

Caroline Casey:

... in confidence as I used to feel, because I couldn't see. Right?

Will Butler:

Yeah.

Caroline Casey:

I could see the outlines, but I couldn't see. I think I felt so socially awkward. Look, everybody growing up as a teenager, I guess feels socially awkward. But I know I was feeling socially awkward because I couldn't see who it was talking to half the time. I fell a lot and I walked into walls a lot, and I couldn't see who I was waving over to see. I didn't know like at the discos, who was there. It was really weird, it was such a strange thing. And then because my mom was quite sick, I didn't really ... All of that seemed ... Because the stuff going on at home was even bigger than the eyesight stuff, which I didn't know about. So I really felt my childhood was quite lonely. I really felt very lonely and my childhood and very not seen, and not heard, and not good enough. I never felt good enough. I never thought that I was lovable. I always felt odd. Always.

Will Butler:

Yeah. Well, there's this strange phenomenon where it sounds obvious, but it's not, you don't know what you're not seeing. So I think a lot of people often pity blind people for not being able to see the things that they're seeing. But the only reason that that's upsetting to the sighted person is because they know what the blind person might be missing out on. Whereas to a blind person, you exist at a level of, well, you see what you see. And you're in some ways blissfully ignorant of ... You're not upset that you can't see the sunset because you don't see the sunset, so you're not missing the sunset. Do you know what I'm saying?

Caroline Casey:

Well, as a visually impaired person, I'm seeing my sunset.

Will Butler:

Right. Exactly.

Caroline Casey:

And my sunset is just magnificent, my sunset-

Will Butler:

Exactly, right?

Caroline Casey:

... is beautiful. I don't know what the perfectly sight person is seeing.

Will Butler:

Right. It's that you don't have anything to compare the-

Caroline Casey:

No.

Will Butler:

... the experience to, so you don't know how you're different. I can totally relate to the same thing. I didn't know what I wasn't seeing on the blackboard because I wasn't seeing it.

Caroline Casey:

Exactly. I totally understand that.

Will Butler:

So it's quite simple how I think it makes a lot of sense to me how you could grow up not knowing you were blind, but I just wanted to help unpack that for people.

Caroline Casey:

Because I think people think that ... Sometimes I think people don't believe me.

Will Butler:

All right. Which I understand. I understand that, which is why I wanted to really ask some of the more pointed questions about it like how did you know? I think to me it makes a lot of sense. But what about being independent versus the things that you might have needed help with as a child? What was your relationship like with asking for help? Were you very independent or were you in a pack of kids or relying on family?

Caroline Casey:

One of my gracious failings as a human being ... I mean, I have a lot, but one of them is that I have struggled deeply all my life asking for help. It has just been incredibly painfully the hard. It's a hard journey for me to ask for help for two reasons. One, is in the family that I grew up in, it had ... Every family has its own dynamics. Mom was ill, so I was a doer, a fixer, making things right, making everybody happy. That's the nature of me, that's what it was. If there was a problem, I'd fix it. That's just how I was brought up. Dad brought us up that way and mom encouraged him to, so that's how we were brought up. And the second part about it is ... and this is about the sight issue. If I ask for help, I feel I'm looking for attention or people are going to think I'm looking for attention and I burden them with my need. I burden them with my request. It makes me weaker than them. So a huge part of my coming to terms with my vision is about understanding.

Caroline Casey:

It doesn't make me weak to have needs, it doesn't make me weak or less than to ask for help. The greatest strength that I've built into myself is to be vulnerable enough to ask for help, but it has taken a long time. A long time.

Will Butler:

Was there a taboo on showing weakness in your family?

Caroline Casey:

Nobody's ever asked me that so straight, I like that. I don't know. So that I think is enough as an answer, isn't it? I think that's enough of an answer.

Will Butler:

Well, I just asked-

Caroline Casey:

Yeah. No, it's a great question.

Will Butler:

I mean-

Caroline Casey:

It's a great question.

Will Butler:

What I really want to ask is what's so bad about the word "blind"? What's so bad about that label "blind"?

Caroline Casey:

It's other people's associated ideas. Blind is less than, weaker, dependent. That's what I grew up in. You must remember I was born in 1971, I don't see it like that at all now. No, I really don't. But in being born in 1971 and growing up in that world in Ireland, I couldn't see who are visually impaired or blind in positions of influence, or leadership, or ... I couldn't see that. I couldn't see me anywhere once I understood about my sight loss. At 17 years old, I couldn't see it. I couldn't see me. Now, I look around and, oh my gosh. If I was 17 years old now with a visual impairment, wow, can you [inaudible 00:06:24]. Hello? You. Look at all these amazing individuals just getting on and living their life, and speaking their truth, and owning their stuff. Brilliant. But that was not happening in 1989 when I just discovered I was visually impaired.

Will Butler:

Right. Well, maybe for those who don't know, explain that moment when you realized that you were registered blind?

Caroline Casey:

Well, it was my 17th birthday, which is the 20th of October, and my dad ... Oh gosh, this is so embarrassing, but it's so true. My dad gave me a driving lesson because he wanted to feel my adventurous spirit, and my adventurous spirit has always wanted to race cars and motorbikes, be Mowgli from The Jungle Book and being cowgirls. I had this ... and I still do by the way. I still have this dusty biker chick in me. That is my personality. It's Led Zeppelin, "Let's go, let's have those dusty boots on." And he gave me a driving lesson for my 17th birthday. And needless to say, that's when I discovered that I shouldn't have even been cycling a bicycle.

Will Butler:

So it was when you realized when you reached 17 and you realized you weren't going to get a driver's license.

Caroline Casey:

That was my ... Can I just say this is such a first world problem. I'm so sorry for this. But I think anybody who's visually impaired who's lucky enough to be able to consider they might ever be able to drive, it's not the driving, it's the independence to drive. So when I discovered that I wouldn't be on the back of a bike, let alone driving and racing cars, "I honestly ..." This was my response, "... will not except, will not compute, will not believe it. I will find a way."

Will Butler:

Was there anger between-

Caroline Casey:

No.

Will Butler:

... you and your parents-

Caroline Casey:

No.

Will Butler:

... when you realized-

Caroline Casey:

No.

Will Butler:

... they [inaudible 00:08:29]?

Caroline Casey:

Listen, my whole life is way too complicated for that kind of anger in there. No. No. I really need to say my sight was one of many things going on in my home at the time.

Will Butler:

So if you weren't using labels like "blind" or, "severely/visually impaired ... Sorry for the talk. "Severity", just [inaudible 00:08:58]. We're all just dour.

Caroline Casey:

I know, it's so extreme.

Will Butler:

It's such a bummer. No. If you weren't using those sorts of labels, what were the labels that you put on yourself as a young adult or a young teenager?

Caroline Casey:

Casey.

Will Butler:

Casey?

Caroline Casey:

The only label ... Because I think everybody knows that I hate labels. I think labels are limiting because we're so many labels. There's so many facets to our character. And so much of my work is that we are never defined by one thing, one experience, one success, one failure, one label, one marriage, one anything. Nothing. So how I would describe myself as I was growing up, the caricature I developed of myself ... Which is probably the best way to say this, and this is why I say that I was the fraud stripe bearer at 28 when I came out of the closet. So I created this caricature after I discovered that I was visually impaired, that I was going to compensate for my site. Because obviously I left school and I went out into university, and I went into the world and I really did ... I understood how low my vision was. So I created crazy this caricature, this outgoing, funny, extroverted hippie ... and I was a tomboy anyway.

Caroline Casey:

I don't know. I thought I had to be more. I thought I had to be more to be lovable, and be more to be good, be more to be accepted. Because I knew that my vision that the older I got, and as I went through my 20s and I realized that my sight was becoming a problem ... Because it was. There's no doubt it was surfacing. And the more it would surface, the more I'd push it away, and I would deflect, and I would detract. And that's when the anger started to come. I can honestly tell you the anger started to rumble around my belly somewhere in my mid 20s.

Will Butler:

How old were you when you ... So you went to college for the arts, right?

Caroline Casey:

Yeah, I did archeology and classics, which is hilarious because visually impaired to archeology excavation is just dreadful.

Will Butler:

Obviously. You pick it up and touch it. But you didn't end up taking any of that route, you ended up going into consulting. You talk about your brief career at Accenture, but I want to dig into a little bit for those that don't know, what does a management consultant at Accenture actually do? So you're 25, set the scene here, okay? Because I want people to understand-

Caroline Casey:

Oh my god.

Will Butler:

... everyone talks about Accenture, PricewaterhouseCoopers, whatever it might be. I think a lot of people don't understand what these people actually do.

Caroline Casey:

Can I just say, this is a really tricky ground because I just [inaudible 00:33:57] The Valuable 500 which is this global campaign that I created [crosstalk 00:34:01].

Will Butler:

Yeah, we'll get there.

Caroline Casey:

Accenture were one of our first companies and PricewaterhouseCoopers, PwC, and Deloitte, and KPMG, they're all part of it. So I have to be very careful what I say here, all right?

Will Butler:

No, that's fine. You can be as diplomatic as you need to be, but I wanted people don't understand what the day to day of management consultant is so they can get a sense of what you were toiling away at when you were [crosstalk 00:12:24].

Caroline Casey:

Well, okay. When I went in 1997, I went in as a Change Management Consultant. Human beings is what I love. Everything about how ... I mean, this work I'm doing now, it's all about human belonging. It's all about every single one of us having the chance to be ourselves, to truly be who we are. So change management, I did my business master's and change management and that's really how do teams and people thrive? How do you make change happen in a business? So it's not the technology, it's not the processes, it's the people. It's all about the people. So I went into Accenture and my job was about the people in the businesses. So my daily job would have been, the first big obstacle for me was everybody that went into Accenture at the time had to do coding and I could not see my computer. It was just dreadful. So I just had this great friend, Lisa Brown, who I just ... She was my great co-conspirator. She just helped me along. I mean, I told her it was not such a great vision, she just thought I had very shortsighted.

Caroline Casey:

She didn't know extent of it. So I did that. But a lot of my work was designing training courses or looking at a human strategy. So I certainly would have had more of the people facing role, not the kind of computer facing role. And working a lot with individuals and training and designing training courses, that's what I would have been involved in as a young analyst. And then as a consultant, that gears up and you do more strategic work around people. So it was a lot of thinking and creating. I was very creative and using as little computer time as I could. I mean, let's be honest, this is ridiculous because every single visually impaired and blind person, there's no reason why they can't engage any ... Certainly now, with technology because there's so much technology advances. But even back then there were, and I just didn't do it because if I was to use those, then they'd find out that I was visually impaired. Right? So I talked my around everything. I became the world's greatest detractor and I honed my skill on communication, on persuasion, on collaboration.

Caroline Casey:

I learned how to collaborate very quickly. I loved taking care of our team, that's where my skill area was. All peoples skill, because it all came-

Will Butler:

Harnessing-

Caroline Casey:

... from my heart. I'm very emotional.

Will Butler:

Harnessing other people's energy to accomplish the tasks that you might not be able to accomplish.

Caroline Casey:

I was a great salesperson.

Will Butler:

I really do want to dig into this idea of sneaking around a workplace and hiding because I've done it before.

Caroline Casey:

But I totally did. Listen, I totally did that. I totally did.

Will Butler:

Because-

Caroline Casey:

listen-

Will Butler:

... there's a sense of pride you get out of it, you feel like you're pulling one over on everybody.

Caroline Casey:

For sure.

Will Butler:

Like you're fooling everybody, and you're so proud of yourself.

Caroline Casey:

You do for a while. I really thought that I was the world's, as I say, gracious pretender or greatest detractor, which I thought was amazing. And I did a great job of it until a point came. I've often quoted Maya Angelou in the last few years because I came across this quote that saying, "There's no greater agony than an untold story inside you." And I do think I started to get really exhausted. So the joy of pulling one over on people started to get very tiring, as it starts to get harder. And actually not being me, and not being authentic, and trying to hide just exhausted me.

Will Butler:

And there's something ... it's interesting, back to labels. There's some things endearing about, "Oh, my friend, Caroline, doesn't see so good so I help her out with some code." As opposed to, "Oh, my friend, Caroline, is blind, so she needs me to do her coding for her."

Caroline Casey:

So easily knowing that I'm talking to somebody else who has the same lived experience. Yes. I wish we could just take this tiny little piece of conversation, and yeah, that's exactly what it is.

Will Butler:

I mean, the whole goal is that hopefully if someone's listening to this and going through the same thing, they understand it's not worth hiding.

Caroline Casey:

It's not worth it. It's not worth it.

Will Butler:

I mean, what would you tell yourself if you could go back in a time machine and go back to yourself in the first day of work at Accenture, what would [crosstalk 00:39:36]?

Caroline Casey:

No. And do you know what I could, if I could go back in a time machine. I'm 17 years old when I found out, and I would put my arms around myself. I'd give myself the biggest hug and say, "Just because your eyes don't work so well does not take away from who you are. And the most important thing that you can do, Caroline, is just go out and live your life in your unique and crazy way. And the best chance that you have of doing that is being honest." Listen, I wasted a lot of years of my life. Don't get me wrong, I was very successful. Those 11 years, I punched well and truly above my weight, but at a cost. These are the cliches, they're going to run off my tongue now, but they're very important. Look, the only business that any of us have is being who we really are. We are better in our relationships, we are better in our friendships, we are better in our working life when we know ourselves and we accept ourselves for the good, bad and the ugly.

Caroline Casey:

We're not at all supposed to be perfect or shiny all the time. I wasted a lot of time being somebody that I thought was good enough, when actually all I was doing was undermining and underestimating myself.

Will Butler:

Until you had a crisis moment.

Caroline Casey:

Yeah. All of the greatest successes in my life have been born from crisis. All the greatest pain, ... Well, I mean when I say failure, I'm doing that with a smile on my face because I actually don't believe in failure anymore. I just believed in put off success potentially or lessons. But all of the great moments for me in my life, great growth moments, great learning, great success, great chasing has come from dark, hard pain crisis. I mean, when I think about The Valuable 500 and how that was born, it was born on the death of my father. So the crisis that led to me coming out of the closet and going into Accenture and telling them the truth was simply, I didn't like myself anymore. I didn't like myself anymore. It was too tiring trying to be somebody I wasn't, and I got to a point I was going, "Actually, I don't like me. I don't like how I'm turning up." I honestly didn't like myself.

Will Butler:

What were the things you didn't like? What were you doing?

Caroline Casey:

I just was exhausted trying to see, exhausted trying to hide it, exhausted trying to pretend. And also I was resentful now. So I think the resentment was starting to seep out of me. I think maybe the greatest lines in my face happened in that time because I was probably constantly squinting trying to see and frowning through frustration, and I didn't feel at peace. I didn't feel at peace with myself. I wasn't at piece of myself, I feel like I was just a little angry ball or something of frustration. I don't know how other people experienced me, but I'm guessing probably not ... I mean, don't get me wrong. I'm so lucky, I have a lot of people who love me. I have lots of friends, I have a very full life, but I'm not sure that I would have really liked me very much back then. I mean, I didn't.

Will Butler:

Too guarded, too defensive.

Caroline Casey:

I think to defensive is probably the word. I think I was very defensive, actually. Not guarded. In some ways I would have said I was very defensive and I think I tried to overcompensate, I tried to make people like me too much and there was something quite pathetic in that. Do you know? And that's devaluing yourself, do you know?

Will Butler:

Yeah.

Caroline Casey:

Needy. I think I was needy and defensive.

Will Butler:

Well, you were trying to prove yourself. Right?

Caroline Casey:

Yeah. Totally.

Will Butler:

Trying to prove yourself and no one even from the outside looking in, understands why you're trying to prove yourself.

Caroline Casey:

Exactly. You see, there isn't a label across me saying, "This is why she's behaving that way." Mind you, I shouldn't have been behaving that way anyway. But there was no justification for it, there was no explanation. There's no context for anybody else to understand.

Caroline Casey:

... no explanation. There's no context for anybody else to understand. But I was struggling. I was really struggling, and it's lovely for me now, at this age of my life to say, "I actually kind of liked me." That's a great relief. Oh my gosh. I know I'm in no way perfect. And I accept my flaws and my failures and my bits. I'm just kinder to myself now. And therefore I think I'm a much... I hope, I hope I'm a nicer person to be around. I hate the word nice, by the way. I just hope I'm a gooder person to be around, a more fun and more content person to be around now

Will Butler:

So you had this kind of moment, you had this breakdown, you tripped over a rock. This is all on your TED talk, which is why I'm taking us through it. And you said, "I'm not going to do this anymore." And you went to India, right?

Caroline Casey:

Yeah.

Will Butler:

And you rode an elephant through India. Am I butchering this?

Caroline Casey:

No, you're not butchering it. I became Mowgli from the Jungle Book eight months after falling on a rock, and rode a thousand kilometers-

Will Butler:

It sounds kind of crazy to say it out... I kind of had fun saying it out loud just then. It must be fun for you to be able to say it out loud, because it sounds a little wild.

Caroline Casey:

It is wild and I'm very proud of it. I rode a thousand kilometers across India on an elephant, and became a mahout, which is an elephant handler. And can I just tell you, even as I say this to you today, I've repeated this story, I don't even know how many times, but it's my story. And I am so grateful for the fact that when I finally accepted that my eyes were wonky and they didn't work, I actually got to have my dreams come true. And this is the weirdest, weirdest thing about my story, which is why I'm trying to... I feel so passionate, is that when I let go of trying to control it, and to be perfect and to fit in, I found a place to belong. And that is just, why did I waste so much time? Why would you waste so much time?

Caroline Casey:

Because it's not to say that I haven't had tragedy or sadness from 28, I have. But it has grown into more my terms. Can you imagine when you finally admit that you can't see, that you get to be Mowgli from the Jungle Book. You go across India on an elephant. 17 years later I go across Columbia on a horse. In 2002 I went around the world in 80 ways and I rode a motorbike. I tested a Maybach Mercedes for Autocar. Like those three dreams I had at 17, I got them when I accepted I couldn't see. That's hilarious.

Will Butler:

Those things seem a lot more difficult than a bit of code at Accenture.

Caroline Casey:

No. Oddly the mundane of living a life with vision impairment, is much harder than doing those adventures. Don't get me wrong, it is harder sometimes simply to get from one side of the city to another side of the city, to go through an airport, to order a menu with a vision impairment, than it is to go across India on an elephant. Seriously. And that to me is weird, right? Like what is that about?

Will Butler:

Yeah.

Caroline Casey:

It's easier to do these-

Will Butler:

Yeah, why is that?

Caroline Casey:

Exactly. It's easier to do these massive things, but it's hard just to live and to belong in our world. Our world is not designed for people who have different experiences of sight or hearing or mobility or mental health. It's designed for some weird average that I don't even understand, because I've always said, "Well, what the hell is normal?" I don't know what normal is. But the world is not designed for those of us who have different lived experience. And that's not okay, because we could make our world so much more. We could remove the barriers, for everyone. So if we could remove the barriers for everyone, then we wouldn't really have disability, would we? We'd just have a different lived experience.

Will Butler:

Yeah. I want to talk about debunking that myth of disability, But I want to ask, so after you go and have this amazing adventure, why don't you just go back to Accenture as a better person, or go pursue elephant stuff? Why did you then decide I want to advocate for people with disabilities, I want to make that what I do in my career and my life? What made you [crosstalk 00:49:03].

Caroline Casey:

I think you are probably the best interview I've ever had in my life, because you're just asking the proper questions.

Caroline Casey:

Okay. So I didn't go back to Accenture and I didn't go and hang out with the... I did set up an organization called Elephant Family, by the way, which is still to this day doing brilliantly with four other gentlemen. So my love for elephants stayed, very much so.

Caroline Casey:

The reason I didn't go back to Accenture or continue a life doing adventures, which by the way, I could have. Because you can imagine an Irish visually-impaired albino girl going across India on an elephant, got a lot of, certainly Irish media attention, and from the UK. National Geographic did a film on it-

Will Butler:

Sounds like a Netflix show.

Caroline Casey:

So look, I could have spent the rest of my life being, okay I hate this word and everybody knows this, an inspiring visually-impaired adventurer. And look, I've got to tell you, there was a moment I wished that I had, because I love the adventures and I love people. And I'll be really honest, I look on adventures with jealousy, truly. So there was a moment that that was there for me.

Caroline Casey:

And then on the other side, why didn't I go back to Accenture? Because I had raised a shitload of money when I did the elephant adventure and I had become a good advocate and spokesperson and whatever. And Accenture were like, "Hello, look this one, she probably could sell business very well." And they were very kind and they said, "Listen, come back, come back, come back." And I was like, "But I can't." And the reason I couldn't go back, is because I had been exposed to the disability inequality crisis, which I had contributed to by not owning my own disability. I had discriminated. I was part of the problem, and my sense of shame that I was somebody who I always thought that I was somebody who cared, that everybody got a second chance.

Caroline Casey:

I deeply wanted nobody to be left in the corner of a room. I've often said, "To watch people be bullied, breaks my heart." But one thing breaks my heart more than being bullied, is to watch somebody be ignored. And so when I understood the scale of the disability inequality crisis, I could not simply go off around the world, doing adventures that I wanted for my adventurous streak. And I couldn't go back to Accenture, because I couldn't un-know what I now knew. And what I knew was, "Yes, this 1.3 billion people who are possibly the most marginalized and discriminated and excluded a group of human beings on the planet..." It's not a minority. This is 15% of our global population. 90% of kids who have a disability don't get into a classroom, you're 50% less likely to have a job. And I'm like, "Oh my God, no." The problem is, really quickly I saw the solution, or I thought I saw the solution, and that was business. And the minute it came into my head I couldn't let it go.

Caroline Casey:

I couldn't let it go. And I have been obsessed with it for 20 years. It chose me. I didn't choose it. I couldn't take the well-paid job and I couldn't do the adventuring, because I had no right to walk away from what I thought might be part of the solution. And I had to make up for the awful crime that I had committed for 11 years.

Will Butler:

Well, I think there's some atonement there.

Caroline Casey:

Yeah. A lot.

Will Butler:

This might seem like a side question, but did you make any blind friends-

Caroline Casey:

Loads.

Will Butler:

... along the way?

Caroline Casey:

Yeah, loads. Loads.

Will Butler:

Do you remember who your first friend was who was either severely visually impaired or registered blind?

Caroline Casey:

Well, first of all, I have a sister who's visually impaired, the same condition that I have. So-

Will Butler:

Oh yeah, I meant to ask you about your sister, yeah.

Caroline Casey:

So Hillary. So I had that and, that's a whole other story that can be listened to on TED, and she and I are incredibly close now. We certainly weren't, growing up. But the first person who had a massive impact on me, was a man called Miles Hilton-Barber. Now, Miles Hilton-Barber was one of my co-adventures in a thing I did called Around the World in 80 Ways, in 2002, which was about a year after the elephant trip. And Miles had a massive impact on me, because he was the adventurer I wanted to be. And he had lost a sight at 29, and when I did the adventure with him, he was 50. And we also did the adventure with another man called Mike McKenzie, who was I think 51, and was paralyzed from just under the chest down, and a double-leg amputee.

Caroline Casey:

These two men had a profound effect on my life, because it was just pure, glorious, troublemaking fun. But Miles really probably helped me the most in that, what I call the journey to self-acceptance, the learning of bright sight. He was really very important to me. And then along the way, oh my gosh, a plethora of friends who I have. But he was the first. I mean, it's not that he was the first visually-impaired person I met. He was just the one that I can tell you I had the greatest impact on me, early on.

Will Butler:

What do you think you learned from your friendships with other blind people?

Caroline Casey:

The same I learned from my friendships with anybody.

Will Butler:

Yeah.

Caroline Casey:

It's not because of visually-impaired... the reason I think I'd like to be your friend, because we have a shared understanding. And that's the same in any friendship, isn't it? What I love about people are people who, we have the same values. We may have the same curiosity. We may have the same sense of adventure. We may be completely different, but love the challenge of each other, that we may like to dance. We may like to ride motorbikes.

Caroline Casey:

So for people who are visually impaired, I don't like all visually-impaired people because we all happen to be visually impaired. I like people who are visually impaired, who have the same kind of crazy streak [inaudible 00:11:37].

Will Butler:

Yeah, the same interests, the same... like get excited about the same things that aren't visual impairment. Yeah.

Caroline Casey:

Like I've learned more, you've in this conversation, the way that you've asked the questions, I feel understood without having to explain. And that is often the core of friendship, is that people take you just as you are, they unconditionally love you, your good, bad and the ugly, because they're your friend.

Will Butler:

I was watching that concert with Stevie Wonder and Andrea Bocelli, that One World Together at Home thing-

Caroline Casey:

Yeah.

Will Butler:

... and thinking about why people stigmatize blindness so much, but love Stevie Wonder and Andrea Bocelli so much. And I was just thinking, what everyone thinks when they hear the word blindness, that's not real. But what they feel when they watch Stevie Wonder perform, when they listen to Stevie Wonder or Andrea Bocelli, the feeling they get, that's-

Caroline Casey:

That's it.

Will Butler:

... that's who blind people really are.

Caroline Casey:

So first of all, can I just say I love the fact... I do want to high five Be My Eyes, and what you did in that global concert, I just think it's amazing. And I'm also incredibly proud that one of the valuable 500 Procter and Gamble were so much part of that. And so can I just say-

Will Butler:

Yeah, they were huge.

Caroline Casey:

... I was so excited when I saw that. And it made me... I was just... yeah, it was really important. So to come back to the Stevie Wonder and Andrea Bocelli, do you know what my feeling on this is? I think they sing through their souls and hearts, because it's how we feel. I don't know why people... I think they think they're connecting because they're blind, they're not. These guys are communicating in a kind of invisibly magical way, that when I speak on a stage, right... I've been told about what apparently it is to sit in an audience when I speak if I'm good. Because loads of days I'm sure I'm shite. But I think people think it's what I'm saying. It's got nothing to do with what I'm saying. It's, I think, I might be doing it through my heart. Because that's how I'm connecting, and-

Will Butler:

It just struck me that they didn't have to put Stevie and Andrea at the beginning and the end of the concert and they didn't have to do that just because they're blind.

Caroline Casey:

No.

Will Butler:

There's something that people connect with deeply about that.

Caroline Casey:

It's an energetic magic, right? It's energetic magic. I'm telling you, it is energetic magic.

Will Butler:

But I don't want to hold them above everyone else. I want people to understand that this is the reality of blindness.

Caroline Casey:

Yeah, like-

Will Butler:

This isn't the outlier.

Caroline Casey:

Okay. Can I just say, if Stevie Wonder was a really bad musician, okay, this is all irrelevant. But he happens to be an amazing musician, and Andrea Bocelli an amazing singer. And we're getting then a layer on that energetic magic, and I defy you not to have your heart like squished inside. It's like Adele. You know the way everybody fell in love with Adele?

Will Butler:

Yeah.

Caroline Casey:

Okay, this is, I've been thinking about this thing. Adele, right, she was so accessible to all of us through a broken heart, but she sang with her heart, and had amazing songs, right? She could access the emotion. And I think Stevie Wonder and Andrea Bocelli are exceptionally talented and then could access this extra energetic emotion. And that's what makes Adele amazing.

Will Butler:

Yeah.

Caroline Casey:

The superb actors, the superb singers, they have the talent and then they have this, I don't know what it is, it's magic.

Will Butler:

Well, the reason I got onto that, was because I think sometimes that Stevie wonder or Andrea Bocelli is a good metaphor for what having a blind friend can do for you. Because it can just show you... it can challenge your whole perception of what a blind person is, right? And just change your associations to be more positive than negative, because we're fed so much negativity. We just need to break that mold.

Caroline Casey:

And you're right. Because first of all, even that sentence, what is a blind person. Sorry? It's so bizarre, isn't it? I now can say to you, yeah, look, wouldn't it be great if you had perfect vision? Super, because I could do lots of things, but I tell you what I would lose. I don't know about you. Would you take an operation to make your eyes perfect now or not? I don't know anymore, because then I'd lose all of these other amazing things that I do, and amazing ways of being in the world. I mean, I would love to have the ability to get the car to drive, but we may have driverless cars at some point. But other than that, I kind of think the way I turn up in the world, is bloody smashing, it's smashing.

Will Butler:

I don't know whether or not I would take it, but I certainly wouldn't expect it to make me much happier.

Caroline Casey:

That's it. So like a few years ago, maybe 20 years ago. I'd go, "Oh, absolutely. I'm there. Give me the magic operation." Now I'm like, "Well, I don't think having more or less vision is going to change my experience of life."

Will Butler:

Yeah. Well, and I think that's the key, is not tying your happiness-

Caroline Casey:

... to your sight.

Will Butler:

... the your level of sight, right?

Caroline Casey:

And that is broken. That circuit got broken for me. My happiness and my life, and my experience of life, it will not change if my site was to improve. No, not at all.

Will Butler:

So back to the mundane. Why is it so hard to do the day-to-day things that aren't designed for us? And why is business important? Why is the business world important in changing that? Let's hear where we've arrived at now after all [crosstalk 01:02:10]

Caroline Casey:

After 20 years of campaigning. Okay. Well I'm going to give you why I think the business is essential. So the scale of the inequality crisis is so big, and we've seen that governments cannot change it on their own. Charities cannot change it on their own, and all those kinds of things. It can't, like we've not seen exponential, accelerated change for 15% of our global population, right? We haven't seen it. And I know we have the ADA and I know we have the UN Convention of People with Disabilities. I get all of that, but we are still seeing mass exclusion.

Caroline Casey:

It is only my opinion, but I believe that business is one of the most powerful forces on the planet. If business is not at this table, meaningfully, seeing the value of the 15% of our population who have a lived experience with disability, if they don't see the value of this market as customers and suppliers and members of community and talents, if they don't see this value and they consciously or unconsciously exclude, then society will.

Caroline Casey:

However, if business included and valued, society would include and value. As far as I'm concerned, inclusive business creates inclusive societies because of the power of business. Now, if you want to see disability be equally included within business, why is it not happening? As far as I'm concerned, three reasons. One, we do not have leaders. We have not had leadership. We didn't have people like the Richard Bransons or the Sheryl Sandbergs or the Mark Zuckerbergs standing with and for disability. We've never had that, right?

Caroline Casey:

Secondly, when we look at the diversity and inclusion agenda, disability has always been on the sidelines. We have devised this ridiculous hierarchy of exclusion and inclusion, which always leaves disability sitting on the edges, where we're saying that this year we're going to prioritize gender and race and inclusion is gender, race, and LGBTQ. I mean, that's insane, that's a delusion.

Caroline Casey:

And we've been getting away with this for way too long. There's a horrible statistic saying that 90% of our companies say they're passionate about inclusion, and yet only 4% consider disability. Well, I'm sorry, but that is not inclusion. That is an absolute illusion.

Caroline Casey:

And the third reason that I think disability is being sitting around the outside, is actually the voice of the disability community is only now really, really dialing up, because of social media and the digital revolution and the next generation. And that's the great opportunity that we have. And so, as far as I was concerned, how do we make business inclusive? We need the leadership. And that has been my obsession for as long as I have known. And I don't want your business leadership to say, "Oh, it's a good thing to do and it's a worthy thing to do." No, no, no, no. This disability market is worth a trillion. It's a source of innovation and growth. It's a source of talent and sustainability.

Caroline Casey:

And what I would say to any business, is your brands need to be aware of this huge market. And if you put a mother and a father attached to every one of the 1.3 billion people in the world who have a disability, that is 54% of our global consumers at your peril, business. No more excuses. You can't keep doing it. You'll be insane to let it go. And what I see it-

Caroline Casey:

You'd be insane to let us go, and what I see it is, is when the human need meets a business opportunity, shit happens. And that's why we created The Valuable 500. The human need is for the 1.3 billion people to be respected, and to belong, and to be included. And the business opportunity is everything that I just said, and The Valuable 500 is the 500 leaders who are going to make it happen.

Will Butler:

So correct me if I'm wrong, The Valuable 500 is a top down approach to creating disability inclusion in big businesses that are going to have big impacts on the world.

Caroline Casey:

It's that and one bigger, The Valuable 500, when we fill up our community, we're at 270 by the way, is a group of 500 CEOs who will globally transform the business system to equally include people with disabilities across their supply chain. That's it. It will happen, because if you've got the attention and the energy of 500 CEOs who are willing, and particularly after COVID, as we reset our business systems, to put disability integrated into their business, it will change.

Caroline Casey:

If it changes in business, it will change in society, and then we're going to see change. Then we're going to see change. Because what happened in COVID, it terrified me. We're living through this. Once again, the needs of people with disabilities are overlooked. That we defaulted back to conversations only about vulnerable. What about vulnerable and valuable? You know, I mean, we have to reset this model and the only force that I know that has to be at this table that's not currently there in a meaningful way, is business.

Will Butler:

So when a CEO signs The Valuable 500 pledge, what are they actually committing to do?

Caroline Casey:

Well the first thing, so to become part of The Valuable 500 and phase one is the CEO has to give their signature. And I mean it, we have all of their signatures. They give a signature after they've had a leadership conversation about disability, and made a leadership commitment that we put up on our website, and they have communicated their intention internally to their business and externally to the public. That's the first step. And what's so important about this is 54% of our global company boards have never had a conversation about disability.

Caroline Casey:

So how on earth are we ever going to change it? But when you have a board conversation, then action happens. And what we say to any company, if a company has done nothing, well begin. If it's done, something, well then scale. If it's a leader, then influence your peers, but at peer level so that you support your business and your people to operationalize and integrate disability and give them the resources they need to make this a reality. And now no more excuses. Disability is your business business. It is.

Will Butler:

Do you want to shout out one or two of The Valuable 500 companies who you feel like have really taken this and run with it and really kind of implemented?

Caroline Casey:

Well, you know I've got to say, you can go onto our website and you can see all of the companies, but I am going to shout out to a handful of the very first. So we launched it in the World Economic Forum in Davos, on the main stage of one of the most important business platforms in the world, and we were told that there was no way you're going to have a disability conversation on the main stage of Davos. And we did, with five of the world's most influential CEOs.

Caroline Casey:

So I need to shout out to Peter Grauer, the chair of Bloomberg. Amazing. Paul Coleman, who is our chair person and he was the CEO of Unilever and his role has being taken on by Alan Jope and he's fantastic. Jeff Dodds at Virgin Media. Phenomenal. Virgin Media have been our partners. Accenture were one of the very first and quick to sign, and Judy Sweet, who is now the global chair of Accenture. Microsoft with Satya Nadella, phenomenal. Omnicom, another strategic partner of ours, which was led by the late and the fabulous Janet Riccio.

Caroline Casey:

You know, these are organizations that were pioneering, were willing to say, some of them had been brilliant and leading in the space of disability, business inclusion, and some hadn't, but they were willing to begin and try. And one of the most powerful moments or memories in my life is when Peter Grauer, the chair of Bloomberg, sat on a main panel in Davos and said, I don't know, I'm not doing enough.

Caroline Casey:

Wow. That's leadership. Because what he's doing is giving permission to everybody. Leaders aren't supposed to know everything, and they certainly don't know about disability inclusion or exclusion in their business. So the bravery and the leadership of those first few CEOs has been phenomenal to me. So I have huge debt to Paul Pearlman, Peter Grauer, and Jeff Dodds, and Janet Riccio. Amazing.

Will Butler:

There's this great little film that you made called Diversish.

Caroline Casey:

Yeah, I love it.

Will Butler:

And it's a journalist pitting these questions about disability to all these different company leaders.

Caroline Casey:

Yeah.

Will Butler:

It's staged, right? But none of them are willing to say, I don't know, we're not doing enough.

Caroline Casey:

I know.

Will Butler:

That's the joke of the film, right?

Caroline Casey:

Exactly. They're bullshitters.

Will Butler:

Is that they all are so poised, they're all so good at dodging questions, so political in so many ways. None of them were willing to say, gosh, I don't know. We need to do better.

Caroline Casey:

There's a few things that I've really learned over the years is, there's a few blocks in the system. One is a willingness to admit that you don't know at all, of leadership. So that's number one. So when they admit they don't know it, then we can help them. Okay. Number two is the scarcity model that we're all looking at. If I give to you, I take away from myself. So it's a lack of collaboration and real partnership together to try and help. So we should not be saying, I'm an ally for all inclusion, not just for disability inclusion, I don't think it's more important than anything because I also happen to be a woman and I happen to be Irish and all those other things. So we should be allies for each other.

Caroline Casey:

The third thing is if we're innovating, we are going to fail and we're going to get it wrong, okay? So I think people need to be, we all need to be gentle when we're innovating, because innovating by its nature will have failure. So we'll try it together. And so that's what I kind of think The Valuable 500 is about, it's getting leaders who are willing to try to put their energy to commitment, who are willing to admit that they don't want to have it all right, and that we're all willing to be allies together, and try. And try.

Caroline Casey:

And I guess for me, The Valuable 500 has this extraordinary opportunity as we're resetting our business systems. Oh my God, you have a chance to change the world. Not only for 1.3 billion people, but for everyone, because we should be talking about full human inclusion, and we need to stop categorizing, siloing, competing identity politics. No human life is more valuable than another. None. None.

Caroline Casey:

And when we go back to how the world is designed, if we were to design our world with every lived experience in mind, I don't think we'd have disability. You know, I really believe we've had the medical model of disability, we've had the social model of disability, and The Valuable 500 is really pushing what we call the valuable market model in disability. Meaning we all have value.

Will Butler:

Well, I think it's important to note that just like you did, and just in the same way that I did, many of these CEOs have experiences of disability that they're not open about.

Caroline Casey:

Well EY did a piece of research for us, and it's startling. First of all, it says 7% of our CEOs have a lived experience of disability, and four out of five of them are hiding it, as I did so many years ago in 1989. Isn't that an extraordinary thing, in 20 years the world hasn't changed that much, and that's why we need The Valuable 500.

Caroline Casey:

And I want to be really clear, The Valuable 500 isn't everything. Business isn't everything. Leadership in business isn't everything, it's just a really important part that needs to be part... like we need all aspects of society playing. We need everybody engaged if we want to resolve this. So it really does worry me. Now we have four out of five of our leaders who have lived experience disability, not willing to talk about it, because they must still be as scared today as I was 20 years ago.

Will Butler:

All right. I really like the idea of debunking the notion of what a disability is and I have this chart that I sometimes use in presentations that has on one side it has all the different types of disabilities, vision, hearing, cognitive, maybe there's like emotional things, and then on the top it's more like lifelong acquired, situational, temporary.

Will Butler:

And the thing that people don't realize is the need for accessibility doesn't just... the lines are very blurry between what is a temporary and a permanent disability or a disability you acquire due to age, and sometimes just a mother holding a baby can have the same disability as someone with some other kind of lifelong motor impairment. And we're not just designing for a niche group of people.

Caroline Casey:

No.

Will Butler:

But we're designing to maximize the impact of everything we do.

Caroline Casey:

This is why we call the design for all the universal design, and actually the greatest innovations around universal design come from the extremes of living, different ways of living. Like I jokingly say, I can't remember where somebody gave me this information years ago, but the remote control for televisions or whatever were designed for visually impaired people to watch TV, which I think is hilarious.

Caroline Casey:

So that, like text messaging for people who are deaf, you're so right. Well first of all, by the way, every single human being on this planet is going to experience disability at some point in their life. This is about future proofing the planet and society for yourself. This is not for this niche 15%, because it's going to be you and us. And when it is you and us, you know that you would want the exact same that you had before you acquired your disability.

Caroline Casey:

And like the laugh of it is, you're so right, is when a lady is, like when my mom, she was saying when she was her buggy, when we, myself and my sister, were young, that's exactly the same as somebody who would be troubled who were using a wheelchair. Because, there's wheels, and if there's steps, how do you do it?

Will Butler:

Yeah.

Caroline Casey:

So I also think, honestly, airports. If airports were designed with people who have different experiences of disability, they'd be much better places to hang out, wouldn't they?

Will Butler:

Yeah, yeah, there's so many... I think like the disability with a capital D has been such an important historical movement, but it also, the label does us a great disservice when you're trying to make a business case for it because it ignores the fact that it's about everybody.

Caroline Casey:

Well it is, and you know something, I'm coming to the point that I don't want to make the business case for disability anymore. Since when were we ever supposed to make the business case for human beings?

Will Butler:

Yeah.

Caroline Casey:

You know, and I also want to say before COVID, people with disabilities, if they wanted to work from home, or they needed particular accommodations in the workplace, the accommodations were seen as expensive, and since COVID now it's all, oh, firms can be agile and flexible and remote working. Do you know what's just happened? We've just seen that the lived experiences of many people with disabilities have been emulated right across the world. And you know what we've also seen is the system can change if it wants to. So the question is, do you want to change or not? Do you have the intention? Do you have the energy? Do you have the commitment? And you will if it affects you. And do you will.

Caroline Casey:

And this isn't just about a physical disability or physical impairments, in situations exactly as you say, it's temporary. But you know what? You'd want to design the world for every eventuality. That's what this is about, right, isn't it?

Will Butler:

Yeah.

Caroline Casey:

And this is not about the business case, because the business is about human beings. Business is about human beings. And I don't see why we need to make the business case for 15% of our global human being population. Who, by the way, if we design for us, everybody gets to benefit. And on the last point of this, if nobody believed us, look at Apple. Baked into its DNA is universal design, right? It was the first company in the world to trigger a trillion, because Steve Jobs wanted to design beautiful products for all. That's the best case for disability business inclusion or universal designer design for all that I know.

Will Butler:

And from a workplace perspective, is there anything, like is it the company's responsibility to make the workplace a safe place for people who are scared? Like you and I were to come out at work?

Caroline Casey:

Yes.

Will Butler:

Or is that a personal journey for somebody, is just on their own?

Caroline Casey:

No, 100%. The culture of the business needs to create an environment where all of us can ask for what we need so that we can be the best we can be. And I fundamentally believe leaders make choices, choices create cultures, and if that culture creates a safe space for me to say what I need or not to hide away, I will be a really much better employee.

Will Butler:

Mm-hmm (affirmative).

Caroline Casey:

And we know that. And by the way, that's not a disability thing. That is not a disability thing. You are your most effective, you are your most compassionate, you are your most powerful, you are most productive, when you're authentically being yourself. And before my dad died, he was well known for saying just be yourself, because everyone else is taken, which is hilarious because they didn't tell me I couldn't see very well. But anyway, and he's right. The only job we have to do is to be ourselves.

Caroline Casey:

And so the job that the business cultures have is to create those cultures that people can be themselves. We shouldn't be threatened by difference. We should see it, I mean, let's be honest, difference is the source of the greatest innovation that we ever have. you know, you do the same thing, you get the same results, you do something different, and a different lived experience can give you insights into great innovation. Where do you think Google came from? It wasn't doing the same thing in the same way. Do you know what I mean? So I think innovation comes from different lived experiences and different opinions.

Will Butler:

So you're at 230 signatures to go.

Caroline Casey:

Yeah.

Will Butler:

What does the next year look like? And are you feeling good about getting those signatures? You know, despite the obvious challenges of COVID and all this?

Caroline Casey:

So the first thing is to build this 500 community of which we have the 230 to go, in parallel, we're mapping out the activating the community roadmap, which is going to drive the system change I've been talking about. I'm incredibly excited about the system change work, which gets me very excited. But strangely, despite COVID, we're getting companies coming in all the time.

Will Butler:

Yeah.

Caroline Casey:

And it's really weird because I just thought that wouldn't happen. But I'm some... like today we got a massive name, I can't tell you because it's not been released yet, and we all just sat there. I went like, what just happened? Like we've some of the biggest brands in the world already in The Valuable 500, don't get me wrong, we do.

Will Butler:

Yeah.

Caroline Casey:

But what I think is that business knows now what mainstream exclusion is, and it knows that it's going to have to be more actively and consciously inclusive of disability in its business. And I think it sees the opportunity of The Valuable 500 as a community of safety in numbers, where they can learn from each other and share best practice, and move the dial forward together.

Caroline Casey:

So am I excited? Yes. Am I deeply saddened about how I've seen disability nearly feels like go back decades? I have been as well. But I watched [inaudible 01:24:46] a few weeks ago, I saved it for watching at the Easter weekend, and I noted human and, but I mean watching that film I cried and I laughed and I just was like, I believe, I hoped you wouldn't mind me saying this, and all of those incredible people, I feel like The Valuable 500 is like the ADA 30 years ago. And I'm excited because I think there's nothing more potent than an idea whose time has come, and I believe with 270, we have enough to keep it going. Do I think we'll reach 500? You bet we will.

Caroline Casey:

And we're going to close it off in January. I'm setting that hard target of January 2021, and I think we're going to do it, but the only way we can do it is everybody deals with business, and you can be an employee, a customer, a supplier. Ask your big companies, be a part of The Valuable 500.

Will Butler:

Yeah.

Caroline Casey:

And can I just say, no more excuses now business, we're here to help. No more excuses about intention and will.

Will Butler:

It's not a party anybody wants to be late to.

Caroline Casey:

I don't think so. And also, particularly when there's such a big opportunity sitting on this, a business opportunity.

Will Butler:

Yeah.

Caroline Casey:

I'll go back to where I... when a human needs meets a business opportunity, that's the magic. That's the Stevie Wonder magic. So that's what makes me excited.

Will Butler:

Well thank you so much for spending some time with us today and telling us all about what you're working on Caroline. It's really exciting and a pleasure to hear about all these projects.

Caroline Casey:

Well, thank you for having me. What feels like, I can't believe we've actually recorded this, but I'd really like to meet you. I'm not hitting on you, I promise you I'm married, but I'd really like to meet.

Will Butler:

No, no, no, yeah, no, totally.

Caroline Casey:

It was such a pleasure,

Will Butler:

Yeah, absolutely.

Caroline Casey:

To have a conversation like this. I'm like, wow, that was just amazing.

Will Butler:

Thank you Caroline, thank you for joining us and thank you for getting us fired up about what you can achieve once you're willing to admit that your eyesight's a little different than everyone else. Thanks for listening to The Be My Eyes podcast everyone, and we'll see you again in a couple of weeks.