“To make change happen, you cannot be defined by one thing” with Caroline Casey

Conversation on experience, expectations, and how disability is infused in business

Hey Debriefers,

I am thrilled to share with a wonderful conversation with Caroline Casey of the Valuable 500. We get deep into our experiences of disability, how businesses are changing the place of disability in our societies, and how Caroline's work is addressing the challenges in that area.

If you're new… Welcome! I'm Peter Torres Fremlin and I make Disability Debrief so we can follow and understand international work on disability. See previous issues or search the archive, and subscribe to get new ones. I love when people get in touch - reply on email, or find me on twitter @desibility.


Caroline Casey is brings a great energy to everything she does, and this conversation is no different. Being open about her experience of disability is part of how she's been so successful, most recently with the Valuable 500, a fast-growing global community of business leaders committed to work on disability inclusion.

Our conversation starts off by diving into our experiences of disability. We get further into what it means to “come out” as being blind, in terms of why she didn't continue the job she'd been doing and how she navigates people's reactions to it. That leads us into reflecting on how her personal story is part of advocacy and connecting with people on different levels to make change.

We then get deep into the role of business in changing what the world is for persons with disabilities. We talk about how it's already happening, and persons with disabilities are leading change — and we talk about the challenges, including how business can be accountable, and how disability inclusion can relate to changes come from the Black Lives Matter movement.

This is a conversation with a human connection and thoughtfulness about change. I hope you get as much out of it as I did.

Caroline with an open smile to camera, a white woman with blonde hair to her shoulders, wearing a black top and against a blurred background.
Caroline Casey

Conversation with Caroline

We spoke on zoom. Here's our conversation edited for clarity.

“If you can do that, you can do this.”

Peter: You said something in an interview that can seem like a paradox. “It's harder to order from a menu than go across India...”

Caroline: “… On an elephant.” I know… originally when I did this adventure, people said to me “You're so inspiring because you went across Indian on an elephant”. And what I really wanted to say is that, well, first of all, stop calling me inspiring. But if you do want to call me inspiring, well, why didn't you call me inspiring because I got on the right bus, because that was harder.

It's harder to live a more normal life – and turn up feeling that you are the same, but beautifully different – than it is to go across India on an elephant. Going across India on an elephant is a once-in-a-lifetime adventure. It’s harder to live a productive life, or certainly it was then. The world wasn't designed for my sight loss. And I hadn't equipped myself for how to deal with a world that wasn't designed for me.

Peter: It really resonated for me in two ways. One was that if we're going to have challenges or be different, it might as well be dramatic. Another was something people often don't understand about our experiences, that ordering on the menu is not correlated to your ability to go to India.

Caroline: This is such a proper conversation, so thank you. This is why I knew that I would enjoy talking to you. The thing that you've just said now, I rarely speak about the full story of what happened in Accenture. When I went to speak to Accenture about my vision, they sent me to an eye specialist. The eye specialist was "Listen, what's going on here? Why on earth are you not dealing with this?" And he said, "Look, you do need to take some time off because you have damaged your eyes, because you've been so incapable of dealing with it." So that's when the idea of going across India on the elephant came, and all that story, that's well-known.

But at the time I was still working for Accenture. I didn't just go into the doctor's office and then go to India. They were trying to decide where to put me – onto what consultancy project. And I was brought in and they said, we want to send you to London. And I said, "But I can't go to London right now," because I was in Dublin. They knew that I’d planned to take the sabbatical and go to India. And someone turned around to me and said, "Well, how can you go across India on an elephant and you can't go to London?"

And I was like "I can go across India on an elephant because a woman's never done that before. And if I fail it that it's still no big deal. I'm not having to turn up and be expected to be exactly the same as everybody else as a consultant. But you're asking me to go to London without any visual support and do exactly the same job as everybody else, who's got the same eyesight. I can't do that." They wanted me to go, I think for a few weeks. For me, I finally had the courage to tell them, “I don't see very well”. I finally have the courage to come out of the closet. And now they’re telling me, well, if you can do that, you can do this.

At some point someone said "Well, tell me what you do see." And they pointed around the office, "Can you see that? Can you see this? Can you see that?"

Peter: How awful.

Caroline: So it was that's exactly to your point is well, how can you go across India on an elephant? But you can't read a menu. It’s not one plus one equals two.

And I remember being really struck by it and going, wow, because I was only, I mean, I was weeks out of the closet. I was so ill prepared to deal with that, I didn't know how to. Part of me just felt the real deep pain. Like I was really angry and I think it made me question: “well, maybe I could see better if I tried harder.”

“Constantly justifying, explaining, coming out”

Peter: That's always there: “am I not trying enough?”

Caroline: Am I not doing enough? Yeah, it was really hard. It is something that I find very difficult. A lot of people, even to this day my close family and friends would say, "But Caroline, I don't understand if you can see the colour of the wall, why can you not …, if you can see that, why can you not …? But you can see that, why can you not …?" And I don't know about you, but it is exhausting. Constantly justifying, constantly explaining, constantly coming out nearly every day on Zoom. I need to come out five or six times because I have to explain, I can't see chat. “What do you mean, you can't see chat, you've got glasses on there.” Oh God. It just becomes this exhausting process.

Peter: When you were passing as non-disabled, “in the closet”, it was easier for you to say that you were shortsighted, so someone could help you, without the weirdness that comes with a more serious label. But on the other side, when you're out, it's easier to say, “look, I'm legally blind” to shut down this line of “how much do you see?” Labels are either too much or not enough.

Caroline: Isn’t it so true that it's in the grey, it's in between those extremes where most of us exist. It’s much more nuanced than what people want to believe. I find that tiring, I find it really hard, I still find it really hard. If I'm in the mood, I don't mind answering the questions, but that depends on what kind of day I'm having. Does it affect you? I don't know, but it depends. It's the same way people would say to me, "So how come you don't have children?"

Peter: Tell me a bit more about how that’s the same?

Caroline: I face that quite a lot. Maybe not so much now. And it was just wow. I mean, I found myself having to explain and to justify, and there were some characteristics or emotions that were the same in the sight. “You're not blind enough. You don't look disabled, you don't look blind.” What is that? And it's the same feeling around, “why don't you have children? Did you decide not to have children, or couldn't you have children?”

Peter: Like a seemingly simple question forces you to expose your life. Or the classic is “why are you disabled? Was it from birth?”

Caroline: On the children… I not sure how I feel about speaking about that because nobody knows. Nobody knows – did I lose a child? could I not have kids? – they have no idea. I find that sometimes with disability, people don't mean to hurt you, but they're well, “you don't look disabled enough. You're looking for attention.” I'm well, “what does this disabled look like? What does visually impaired look like?” Part of the caricature that I held on to was to hold that out quickly and go, well, "I know you don't think I'm disabled enough, but xyz" I knew to try to use it as to get it over and done with quickly.

Peter: to anticipate it.

Caroline: Yeah. To make other people be comfortable and do use humour, and then their shoulders would go down. And it’s a strategy that's worked very well, but it is also tiring.

“It allows me to be able to meet people in a very different way.”

Peter: Seeing your disability differently transformed your life. I want to talk about another side: how you use your story to bring disability into different conversations, into the boardroom. Can you reflect on that? A lot of us have personal stories, but we haven't all found how to share those with others.

Caroline: The story of mine is interesting: born with this condition, parents hid it from me, discovered I had it at 17. Went into a closet, and then came out of a closet and then began the journey of acceptance. If you think about that, my way of coming into it was so odd. I didn't acquire it. I consciously acquired it, but I've a congenital condition. So it's a really odd space.

How was I able to deploy this story? I had many more ways to deploy my story because I had a different relationship with my eye condition. And I think that gave me a greater scope. I'm not the person who acquired blindness because of early macular degeneration. I'm not the person who acquired a spinal injury, I didn't have that. I was born, my parents made a decision based on the way the world in society were constructed. I knew I was odd and different anyway, I came from a very unique kind of family and it wasn't the Walton's and it wasn't Pollyanna, it was a tough enough family. And then I acquired it in my head, then I hid it. So can you see all those intersection points?

It allows me to be able to meet people in a very different way. I can meet people knowing that I was in one or more of those experiences at a different time. There was a time that I didn't know, so I know what that looks like. There was a time that I was hiding it, so I know what that feels like. There's a time that I was trying to come into acceptance and I'm really scared, so I know what that feels like. There's a time that in the office of Accenture that I was absolutely marginalized, I know what that feels like. So with that vast array of experience, I think I come with a playbook that might be broader than most. It wasn't one day I was able to, the next day I had a disability. It wasn't that I was born with a disability, it wiggled around.

And I also have deployed it in the way I've done it because I truly believe inside me: “no more excuses.” Right at the core of me is, are you serious that business does not understand the implication of turning a blind eye to the disability community and what that does in society. I've always believed, for 20 years: “what business does, society will do”. I believe that what business leaders do, society will follow. I believe the most powerful leaders are business leaders. I've always believed that before I even came out of the closet.

Now, Peter, business leaders are human beings and the reason I can deploy that story is because I don't look at people and go, "Oh, you're amazing because you're the CEO of Google." No, you're a human. I'm sorry, but you're a human and potentially a father, you're somebody's brother. You could be somebody's mother.

And I think the reason I've deployed it the way I've deployed it… I've used my heart. I have a story full of an open heart and a broken heart. And I meet leaders and I meet people through my heart, I've always done that. I don't think you can ignore the truth of your heart. And then I back it up with stats. But it requires me to expose myself, sometimes that's very tiring. And so, I think the more I speak the more I learn, the more I've done more therapy, the more I'm evolving as a human and I'm really honest. And probably sometimes too much so.

Peter: thank you for meeting with your heart it really feels that way when you speak. What I'm hearing is that you meet other people through the multiplicities within you, the different stories within you, through that diversity.

“If you want to make change happen, you cannot be defined by only one thing.”

Peter: I think these sorts of multiplicities are in many disabled stories, but sometimes the way we tell the story doesn’t lean into the multiplicity. It’s about how we found the solution rather than remembering “oh look, I’ve also discriminated, I’ve also felt bad”..

Caroline: I like the way you put it. I love that word “multiplicities” of my disability experience. I think it's the multiplicities of me becoming a human. I don't know how it was for you or where you are in that place. But at the beginning, part of when I came out of the closet, I was so naive and honestly clueless. And I thought if am a super-achiever and I'm an overachiever and if it’s inspiring… Actually, no, I hope I'm now more evolved as a person. I think I will not be defined by any one part of myself. Not the sight, not the TED Talks, not the elephant girl, not the whatever. And that multiplicity is something I acquired as I've grown up.

If you want to make change happen, you cannot be defined by only one thing. You can't reach everybody else who are defined by so many other things. Sometimes being defined by these labels limits our ability to connect, because if you're defined by this story or this moment – by this marriage or by this award or by this thing – then you cannot connect because you remove yourself from somebody.

The whole essence of this book I'm finally writing is that if you are defined by nothing, then you have the greatest chance to achieve anything. If you were defining yourself by one identity or one experience or one moment, then you will not be able to grow nor will you be able to connect.

And I think that's the piece that you're seeing now in the Valuable 500. A more mature grown-up woman, thank God, I've gone through multiple failures, multiple life experiences, multiple dreams, and turn up connecting in all of those different ways at different times. The one piece I think that I hope I'm good at is understanding where the connection is. It may not be disability. It may be that we love Jazz and that's who I will talk to.

Peter: “if you want to make change happen, you can't be defined by one thing” is so powerful.

Caroline: You can't. If you want to make change happen you can't be defined by one thing because change requires multiples of pieces and moments and activity and interactions. And, if I’m honest, that's why the Valuable 500 was looking as the combined talent, experience, perception, and sentiments of multiples of people and multiples of companies.

And that's why at the beginning I was very uncomfortable leading the Valuable 500. I wanted the Valuable 500 to be owned by somebody else. And I went around with the idea to lots of different organizations and going, "Look, I don't want to lead it. We should give it to you." And then at the end of the day, I was given some really interesting feedback going “no, these things sometimes need a person to begin the story with”. And they were probably right.

“We forget that disability is completely infused in business already.”

Peter: On another side of how stories transform things, I want to look at the positive side of what the private sector is doing, we'll go onto the challenges later.

Some companies, entertainment, and brands are presenting disability in a new way. A controversial thing someone said to me is that the best communications on disability are coming from the private sector, not the nonprofit sector. What are these stories? How do they change the way we see disability?

Caroline: It’s such an interesting thing. I think we forget that disability is completely infused in business already. It's just that we're not coming out about it. For me, the big differentiator, and this is why I've been obsessed with business, is I want to hear the voices of the disability community who are wrapped up and integrated into business and helping business create that new narrative, because that's really powerful. It's not because the private sector are doing it better than anybody else.

The private sector who are doing it really well are speaking with, and to, and co-ideating and co-designing with people with disabilities. It’s not that the non-disabled private sector people are shooting it out. The ones that are doing it really well are understanding, like they do in any product design and development or whatever, to speak to the people that know.

“Nothing about us without us” is happening in business because that's what they know how to do. Business only lands things really well when it speaks to the intelligence it wants to serve. So that's number one, but the second thing for me is the reason I think business is the greatest opportunity is I don't want to be framed by charity.

I don't want to be framed by being inspiring. I don't want to be framed in that way, because when you frame something as that, it's not empowering somebody. If we say, I'm something to be fixed, it’s something that needs our help. Think about all of the emotion that goes around that. And so part of the problem with the charitable sector piece… is that how we want to be always seen? As needing and dependent upon you and dependent upon your money when you fund us? I'm concerned about that as being the only model.

We need not-for-profits, we need service provision because our governments are not doing it... If we did not have charities and service providers, so many of us would not have the same chance. It would not be a level playing field. But it can't be driven by charity alone, because business touches every part of our life.

And I want to hear what business has to say about people with disabilities in their supply chain, as points of differentiation for their brands, and as points of insight and innovation for technology development or improving telecommunications. For everyone and not just for disabled people. I'm always fascinated by the fact that Apple do what they did, not because of disabled people, but because they wanted to make beautiful products for everyone. And look what that has meant.

I just want to live in a world where people with disabilities in families are considered, are regarded, are valued by the most powerful force in the planet, in a way that is meaningful. And that's the way I want to be seen.

Peter: It’s sort of that “nothing about us without us” works both ways. People with disabilities should be involved, but also business should be involved.

“We have to make it simple at the beginning and bring people in”

Peter: I want to talk about the challenges. One thing I've been concerned about in my own work with the private sector is that it's easy for a kind of company to declare it's doing X, Y, or Z. But there isn't really a mechanism to hear from the disabled people in that company. How do we hear from people with disabilities in business? What accountability mechanisms can there be? I think this is the next stage of Valuable 500 work…

Caroline: I'll be honest, I always had a phase two in mind but we couldn't tell them that. Because if we had told them, look, “we want to build the world's biggest business community to radically transform the business system for disability inclusion,” I think people would have just gone “good luck”. The fact that we were trying to get 500 CEOs to break the CEO silence and make a community… already people thought that was impossible. For the accountability piece, we have to make it simple at the beginning and bring people in. And this is how you make change happen.

So to join the community it was this relatively simple act, which is not as simple as it may seem. To get the leadership to be accountable, to get their signature, to have leadership action and commitment, communicate that action and commitment internally, and we do it externally. It’s hard. Because it's never the CEO who says no. It's a business that is utterly overwhelmed with all the other things that it needs to do. And it says, “don't you realize that we've got priorities? Do you know how busy we are?” and I'm like “yeah, I do actually. And it's not in your business to be leaving 72% of the global population sitting on the sidelines because you just don't recognize the value of this eight trillion dollar market and the implications of you doing that? That doesn't work”.

What we did for phase one is how we hold the accountability. The community holds each other to account. The signature of the CEO holds its honor, the Valuable 500 team hold the business to account, the employees hold the business to account.

Phase two – and this is what's way more important for me – now you've got them in the community, now you've got them feeling safe. How do we deliver that system change? Well, we need to ensure that the disability community is in direct conversation with, in direct collaboration, direct cooperation with the leadership of the business community. We know we've got loads of us around the place, but we need to find and get the best, and bring them into direct connection with this community. Which is exactly what we're doing as we're creating the next phase of the Valuable 500 and it will be announced in May. You'll see this and everything that we have done has been designed with the two sides of the coin: business and disability.

This is what business needs, this is what they're saying the blockers are. And then the disability community are going, that's fine, but we need this and this. And it's only then that we will be able to deliver a business system that will go some way in truly embracing and welcoming this global community. Not just because it's good for business, but it's good for society and it's good for the disability community. We're trying to look at this triple bottom line, that's the intention. Everything that we've done once we got the community into play has the disability community integrated and wrapped around us. So when you see phase two of The Valuable 500, you will see the partnership with the International Disability Alliance with its leader, Vladimir Cuk. He's chairing one of our groups.

Every one of our advisory boards have people with disabilities, including intellectual disabilities. Every one of our team members either has a family member or lived experience. We will be creating an initiative called Valuable Minds — a community of 500 of the world's disabled talent working in business, so we can do a reciprocal mentorship with our CEOs. All the way through it's intertwined.

“Do you know what I hate more than whitewashing?”

Peter: Are you worried about the whitewashing aspect? When people say the right thing, but don’t back it up?

Caroline: What bothers me more, Peter, is they don't know that we know they're not backing it up. Don't treat us like fools, we're not stupid. And I hate that, don't get me wrong. However, do you know what I hate more than whitewashing? At least with whitewashing we can get onto them and do something with it and try not to cancel them out, but bring them into a much more substantive place.

Do you know what I can't bear? It’s not doing anything at all. That to me is worse than anything else, that they don’t do anything because they don't know how to do something. And the fear of being cancelled, or the exhaustion of being overwhelmed, or whatever it is – means there’s too much to do today so that they won't do it. At least with whitewashing we’ve got something to work with and say, “did you know this is not authentic? this isn't real and this is not integrated? But you could do it this way.” We prefer to take them from whitewashing into something more substantive than to put up with the reasons and excuse the saying, but you don't understand how busy we are. That's just awful.

Peter: it's a very tight sort of rope to walk, isn't it?

Peter: This articulation is very useful. As we know, this sector has different takes on how much to accept the commitment and how much to kind of focus on anger at the gap…

Caroline: Can I just say, I don't think it needs to be one or the other. We have to respect both. And this is my point. I think that the reason there's anger at the gap is because there's heinous gaps, heinous gaps that people have been looking at and walking away from. Some of the things that I've heard companies say over the 20 years I've been doing this… I just wonder if instead of putting the word disability and if I put another word in, how would you feel? Do you realize what you're saying – or not saying – that is just not okay.

I can understand: I am angry too. I get angry with whitewashing, but what I try to see at least there's something there I can work with. Because I want to fill the gap. I don't think we should say, well, you shouldn't be angry or you shouldn't accept whitewashing. It is what it is. And we've got to meet people there and you can't judge people for being in those spaces, because that's true. That's just the truth.

“If the corporate world continues to silo and categorise the human experience…”

Peter: In the past year the Black Lives Matter movement has created a very intense conversation about racial justice in business. I haven't seen how much disability is related. And have we from the disability side been able to incorporate a racial justice approach in our own work?

Caroline: This word “intersectionality”, well that's one of the words of 2021. (Along with “you're on mute”.) I'm very hopeful for what we are witnessing with “allyship” – which just means supporting each other's inclusion – how that concept is being realized. When we say inclusion, that means “everyone for all” or “all for everyone”. We stop this ridiculous idea that “if I give to you, I take away from myself. If the light shines on Black Lives Matter, why would it take away from disability?” But, I've been in these conversations and heard stuff like, “well, now we're going to focus on the Black community.” And I'm going, but what about the full intersectional lived black experience? If the corporate world continues to silo and categorise the human experience, we will continue to repeat the same mistakes again and again and again.

I think things are changing. This has been exemplified when we hear about Disabled Black Lives Matter. This helps. If we are going to support or invest in ethnic diversity or the black community we have to make sure it’s all of the black community.  A brilliant example of this is the influencer Lauren “Lolo” Spencer — a black woman who claims proudly that disability is her lifestyle.

And I think that's the younger generation. They’re amazing because they're bringing a kind of rich fabric of humanity into space. I'm not sure that my generation or the generation above me are there, but they're being influenced by the younger generation. For me, Black Lives Matter is a brilliant opportunity not to say “and disability”, because that's not what I mean. It's more to say “all humanity”. How does the Black lived experience turn up in every aspect of the human experience? So use that… through the Black lens, what about disability? What about gender? What about LGBTQ? That’s how we use it, that's how allyship works.

Peter: Rather than that sort of a top-down approach that might sort of divide and conquer the difference.

Caroline: Maybe I'm being too hopeful… I believe if you say that we are investing in gender, then what gender? Are you talking about White gender,  White non-disabled gender, White straight gender. What are you talking about? You know what I mean? If we're going to talk about any of these issues, well, can we have the multifaceted human being that turns up that way. And I hope that businesses are starting to get that, and understanding whether they like the word or not, intersectionality is here to stay. No more categories or silos that are competing against each other. It doesn’t work. It's over, and it will not be tolerated. It was tolerated before – it was the subject matter when we released #Diversish but it won’t be now.

“The only thing stopping this is intention, that's all.”

Peter: From our side we can't tell the difference between the actual challenge business are facing and the pretend challenges. What do you see as the deep challenges that a well-intentioned private sector is going to have to act on disability inclusion?

Caroline: I'm going to start with the actual opportunity, and then I'm going to talk to the challenge of that opportunity. The opportunity that exists right now is that the issue of exclusion of people with disabilities from business can be solved. The only thing stopping this is intention, that's all. Technology is here, the time is here, the critical mass and the numbers, the business case that talks about 72% of our global economy, the 8 trillion market, conservatively. This can be solved. And it's an extraordinary opportunity. I think disability inclusion will push society forward for everyone. Disability business inclusion will push business equity and equality forward. Truly, it will. Disability inclusion, moves society forward, it moves innovation forward, it moves technology forward. This is a huge opportunity that businesses and brands if they would just stop and go, “Oh my gosh, here we are. Because if we get this right, we could get an awful lot more right. And we could achieve in an area and gain ground quicker.”

So what's the real reason they won't? It still comes down to the same reasons that it did years ago. And that unfortunately is down to: perception, fear, “broken”, “costly”, “damage”, “too much on our plate”, “it's too impossible”, “legislation doesn't even let us talk about self-identification”. Here you go. And you know what, Peter, I'm doing this for 20 years. And it's the same thing.

20 years ago when I started this, when I went across India on an elephant and I had National Geographic, and I wrote off to all of these companies to say, "Hi, will you please sponsor this?" Because I was raising money for Sightsavers. They said “we don't do disability.” What I heard in 2017, when I set up #Valuable, and I rode a horse across Colombia, “oh no, we do disability, but it's not our priority. And we're probably not going to focus on that for another few years.” Okay. Here we go. Now look, today at 2021. “We really do... No, we really believe in inclusion. The thing is we just need to get our house in order first.” Or, “we're so sorry, we're not doing enough.” In all of these cases, if you hear about this, it's fear pushing it away. Now it's saying, look, we know we're not doing enough, but like… fear. And what I keep saying to every company is that's okay.

We know you're frightened. We know you're overwhelmed. We know that you're worried to get canceled out, we know you're scared about social media. We know that you have so many things going on. But I can look at them now and go, tough, because this isn't if you're going to do it, this is when you're going to do it. This is about future-proofing your business and your brands. And what's happened now is they know that statement to be true, before they didn't, because we didn't have COVID. So the real truth is they do know that they have to, because they've just lived through COVID because they've seen Black Lives Matter.

“The absolute glory of this community”

And sometimes people turn around and go, well, you know what about this issue of disability that touches every one of our lives? Like, what are we going to do with that? What happens if something like the murder of George Floyd happened and it touched the disability community, what then. What happens if Crip Camp wins an Oscar?

Peter: Oh, wow.

Caroline: How incredible would it be if it’s the absolute glory of this community that could change things? That glory and that pride, which touches 15 to 20% of our population, could unite and say, “why not us?” What then?

And so with all of the reasons why it's not happened, we break it down and they break it into all of these pieces, but I promise you the same thing is the obstacle. It's the six inches between the ears and it is will and intention.

“We aren't going to spoon-feed you because there is no tick box list”

Peter: Even when that intention is there, it's still not easy.

Caroline: No, sorry, of course it's not easy, but it's not easy on any of it. Human inclusion is not easy. Gender is not easy, LGBTQ is not easy. By the way, just being a human, I don't know about you, but being in friendships, being in love, being married, running teams. Wow, It's just not easy. It’s about human beings. Whether it's about customers, suppliers, whatever, anybody who tells you business is about walls and widgets and products. It's not…

Peter: … and the widgets were also hard, it's all hard.

Caroline: I think we're right at the forefront of seeing the truth. And the truth is no different than it was before. And I truly believe most people are good and most people want to… They’re just “we don't have the answers”. Because they say, “show me what to do”.

Well, actually, we don't know what to do because we don't know your business. We have to co-create with you, but you have to help us in the door to co-create with you. We got to hack the solutions together. Our response in the Valuable 500 is help us help you hack the solution. We aren't going to spoon-feed you because there is no tick box list that's going to get it right.

Peter: And if we're spoon-feeding you, then you're not engaging your skills.

Caroline: Exactly. You need to take responsibility. That’s what we say: we want the accountability and the responsibility of the CEOs to push this into their business strategically, so they learn themselves. I'm not going to come along with them and go, “hi, here's the CEO tick box list. And if you do that, you've learned.” No, you haven't. You need to learn by experience. You need to invest, you need to fail, you need to succeed: you.

Peter: And why should we know what this company doing this thing needs to do, they are the experts in that.

Caroline: You said that yourself, “nothing about us without us,” that's the same for business. How can we tell business how to be? Now if we bring disability and business together, yes, we can do that. But I can't expect them to listen to us when I'm not in the building business, but they can't expect themselves to be experts on disability inclusion when they don't have disability.

Peter: This is also a beautiful coming together of different types of knowledge, isn't it? Instead of being contradictory to each other.

“There's enough for all of us, if we choose it to be that way.”

Peter: Are there any reflections that you'd like to leave with?

Caroline: The reflection I'd like to leave with is a few things. One is, it's really good to have a real conversation. You and I do not have the same experience but people think we do, because we both have the word “disability” somewhere amongst the things they describe us as…

Peter: I’m laughing and crying at that…

Caroline: But they would. This word disability has a big burden on it, doesn't it? Because, it's supposed to explain so much. It’s really interesting because you and I could not be more different. Well maybe we could be, we could come from completely different parts of the world. We both speak English. And we're both white, I think. But it's so lovely because though we're very different, the things that we have are the same. The same experience of wanting to be heard and seen and to belong. I sometimes worry about identity politics and how it's tearing us apart and not bringing us together on the shared experience of exclusion and violation and marginalization. I really hope that as we move through this pandemic and we're coming out, that we truly understand there's enough for all of us, if we choose it to be that way.

And I don't want to be anybody else, I really now want to be me and belong as me. And I want that for everybody else in the world. But to achieve that, we've got to accept the tribal truth of human beings is that we don't like difference. And we operate on: “there's only a certain amount of pie”. But instead of pie, if we think of energy, there's enough energy for all of us. And it's just about space and intention, I think.

Peter: Wow. I feel like we could have another hour to conversation about what you just said, but let's save that for next time.

Caroline: Thank you, I really enjoy talking to you.

Further Reading

When I was preparing for the interview, the absolute favourite thing I saw was this interview on Be My Eyes with Caroline: She Didn't Know She Was Blind. My first couple of questions are a reaction to what I heard there, and if you've ever wondered how someone could not know they were blind, or why Caroline identifies as “legally blind” that and much more are in there. Strongly recommended.

Do see what Valuable 500 are up to, which will continue to develop as they get into phase 2 of their work. Designing a world that works for everybody (link to pdf) is their latest Trend Report.

For more about Caroline, see her Looking Past Limits from 2010, a profile on hiding her blindness for ten years (New Statesman, 2017)

For more on disability and the private sector, see the interview I did with Stefan Tromel from the ILO particularly the second part where we discuss how to work on inclusion in the private sector in developing countries.


With all the thanks to Caroline to sharing from heart and mind. And thanks to Stefan Tromel for suggesting Caroline as a guest and helping preparation of these questions. And thanks to you for reading and sharing.

Here's hoping for the Oscars and what happens after,