It was in January 2021 that I interviewed Sara Weller for my Boards of the Future manifesto. I have known Sara, who is former MD at Argos and is now on her fourth FTSE 100 Board role, for about 20 years, so when we spoke, I was completely taken aback to learn that she had MS, and that she was helping to make disability awareness a priority around the boardroom table.
And so in September 2021, I interviewed her for the MBS Weekend Edition, for her to tell her story. This was a humbling experience, and one that has set me on a path to shine a spotlight on just how little we all know about senior leaders with disabilities and the reasons why.
It was Sara who led me to the extraordinary Caroline Casey – a larger than life character with energy, grit and guts, someone that was born to lead and to influence the influencers. Caroline is an award-winning social entrepreneur, founder of The Valuable 500, a global business collective made up of 500 CEOs and their companies, innovating together for disability inclusion.
We caught up over Zoom on Wednesday, the day before Global Accessibility Awareness Day. Caroline turned the tables and asked me the first question: “Do you know that 7% of CEOs have a lived experience of disability?” And then, she answered it for me herself: “You probably don’t know that – because 80% of them don’t report it.”
And so our conversation began. Caroline has led a full and very interesting life. The daughter of an entrepreneur father and lawyer mother, Caroline was born with ocular albinism, which results in significant visual impairment. “I have about one and a half feet of vision. You see my blurred out Zoom background?” she said, gesturing around her, “that’s how I see all the time.”
Rather than treating her differently, however, Caroline’s parents made the unorthodox decision not to tell her about her disability. “Despite being told I’d be blind by the age of twelve,” she explained, “my parents sent me to a mainstream school and pushed me to do everything that the other kids my age were doing. I was trained to not make excuses, it was hard-wired into my DNA. It’s crazy when you think about it now. When I was a kid, I wanted to ride motorbikes for a living… I shouldn’t even have been riding a push bike!”
At seventeen came a key turning point in Caroline’s life: learning about her disability. “I didn’t take it well,” she told me, “I didn’t want to be Disabled.” Caroline went into the ‘disability closet’, not disclosing her condition until she was 28, in a high-pressure career at Accenture. “Because I hadn’t told anyone at work about my disability, I hadn’t been offered support and my eyes had been under incredible strain. I was told to take some time off.”
Most people might have seen this as an opportunity to rest, but not Caroline. Instead, she decided to fulfil a childhood ambition: “I wanted to be Mowgli from the Jungle Book.” So, in 2001, Caroline packed her bags and headed to India, learning to ride an elephant and becoming the only woman in the western world to be a mahout – an elephant driver. “Can you imagine a young, albino, Irish woman riding around India on an elephant in 2001? It’s not exactly typical,” she laughs, “and so the media obviously loved it.”
It was this media attention that gave way to another turning point for Caroline. “It was the questions about my lack of vision from the press that forced me to remove my – pardon the pun – blind spot around my disability,” she reflected. “I suddenly realised: wow, I’m part of a family of 1.3 billion people who have been underrepresented and overlooked. And I’ve been discriminating against them by not owning the fact that I’m part of the community.” It was, in Caroline’s words, guilt and shame that drove her into activism. “I knew I had to be a part of fixing things.”
But how to fix things?
“The key to ending disability inequality,” Caroline tells me, “is business. If we can get businesses to value people with disabilities as customers, suppliers, talent and members of their community, then we could change the inequality crisis. What business includes, society includes; what business values, society values.”
“If we can get businesses to value people with disabilities as customers, suppliers, talent and members of their community, then we could change the inequality crisis. What business includes, society includes; what business values, society values.”
It is this notion that underpins The Valuable 500. Chaired by Paul Polman, with partners Omnicom, Virgin Media and One Young World, Caroline launched The Valuable 500 at the World Economic Forum’s Annual Meeting in Davos in 2019. Since then, 500 CEOs in 41 countries have committed to putting disability inclusion on their leadership agenda. Impressively, these CEOs represent over $8 trillion in revenue and more than 22 million employees.
Hearing Caroline speak so compellingly about the power of business is uplifting and frustrating in equal measure. As someone who spends their time speaking with business leaders, it’s exciting to discuss the opportunity for change when those with influence work towards a common goal. But progress is alarmingly slow. We know from MBS research into the consumer-facing sectors that disability remains low on the list of corporate priorities, and that there’s a startling lack of senior leaders who are (or who are openly) Disabled. And just last month, research from the Office of National Statistics found that the disability pay gap has widened in the UK, with Disabled employees earning almost £2 per hour less than non-disabled workers in 2021.
There is, clearly, urgent need for change. More and more leaders are placing D&I at the centre of their business, but “it’s not a top priority,” or “we don’t know how,” are still all-too-common responses to the question of disability inclusion. I ask Caroline what she’d say to these companies.
“I’d say that as CEOs – the most influential people in the world – you don’t get to say ‘it’s not a priority’. And as for not knowing how… you didn’t know how with gender, but you started. You didn’t know how with the environment, but you started. You just need intention. You don’t have to know the answers, you just have to ask the questions.”
“You didn’t know how with gender, but you started. You didn’t know how with the environment, but you started. You just need intention.”
Today, 20 years after she returned from India and dedicated her life to disability inclusion, Caroline has brought together a community of leaders who do have intention. Through The Valuable 500, forward-thinking companies are learning, collaborating and working towards a large-scale transformation plan for the entire business system. “We’re creating a plan for the c-suite; for changing culture; for getting people to self-ID; for employing people with disabilities and supporting them to succeed; for serving the customer; for representation behind and in-front of the camera; for reporting, and for research. We’ve got 500 companies working on these areas.”
Valuable 500 members don’t pay a membership fee. Instead, being part of the collective provides accountability. “I said to these CEOs – I don’t want your bloody money!” Caroline laughs. “Instead, I told them to put their money where their intention is: invest in recruitment, invest in marketing, invest in accessibility.”
Speaking with Caroline reminded me of a question once asked to me by a journalist. Did I think that leaders were born, or made? Caroline is clearly a born influencer, but one whose past has shaped who she is today.
“I had a complex and dysfunctional family,” she told me, “who loved me but loved me messily. I’ve spent my life trying to be worth something by creating change for others. The fire in my belly is to belong and help other people belong – that’s the beating pulse of what I do, and the beating pulse of The Valuable 500.”
As we come to the close of the meeting, I know that I have been in the presence of someone extraordinary. I leave the room feeling that we’ll be hearing about Caroline’s impact on the world of business for many years to come. I know that I have to be part of this change.
Where were you born? Dublin.
Where did you go to school? A private school in Dublin and then University College Dublin to study architecture.
Family? I grew up in a family of five. My sister Hilary is also visually impaired, and she works for the National Council for the Blind. My brother is a musician. I’m married to Gar Holohan and I have two wonderful step-children.
Favourite film and book? It has to be The Jungle Book!
Who are your mentors? Different times of your life require different mentors, and I’ve been lucky enough to have many mentors along the way. Paul Polman has been a phenomenal influence on my life – he was a hand on my back when no one else believed in me. Jeff Dodds from Virgin Media was also a huge influence on me. Katherine Garrett-Cox, too. I’m also learning a lot from younger people. And Dolly Parton is my absolute hero!
What would you like your legacy to be? I want to be remembered as someone who never gave up and who held themselves to account. Ending disability inequality won’t happen in my lifetime, but I’d like to be known for changing the business system to truly include the human beings who are in it.