As a young child, Caroline Casey was diagnosed with ocular albinism, a genetic condition that severely impairs your vision. She registered blind 20 years ago, and describes seeing the world as if through a thick smear of Vaseline over her eyes.
Casey is only able to make out objects when right up close to her face, hence the warm hug she gives me when I arrive at the east London hotel bar where we meet for breakfast. “It’s a tactic; it gives me a chance to see your face,” she says, her blue eyes smiling through smart marble-framed glasses. She also has a foldable white stick with a rollerball tip in her purple furry handbag, which she takes out to show me.
The 46-year-old entrepreneur is accompanied by Beth, a member of the press team representing her latest campaign, #Valuable, which aims to boost disability inclusion in business. But Casey needs her here for non-work reasons.
“If she wasn’t with me, I would have stood at that door, my heart would have raced, they would have pointed over here, and I would have gone, ‘Where?’” she tells me.
This fear doesn’t match Casey’s confident demeanour, which is heightened by her aforementioned loud fluffy bag, offbeat earrings (a spiral shell and a leaf), salmon pink blazer and long blonde hair.
“When I use my phone, I hold it really close to my face, enlarge the text,” she says, demonstrating. “I can’t see signs. I’m still trying to work out where my toast is, but I’m trying to distract you as I’m trying to do it.”
I hadn’t noticed Casey had been unable to negotiate her breakfast – green tea and a rack of brown toast with pots of jam and butter – until she pointed this out 20 minutes into our conversation.
And this is key to how she lived her life for over a decade.
For 11 years, from the age of 17 until the year 2000, Casey hid her disability from all her employers, and most people in her personal life.
Then, 17 years ago, she finally “came out of the closet”. Now she dedicates her work to building an equal society for people with disabilities.
“We need to create a moment, sort of like a green moment, or an LGBT moment,” she tells me of her #Valuable campaign to wake business up to the potential of workers like her. “I really wanted to see disability equally positioned on the business agenda, that it wasn’t the poor cousin… because we’ve got gender, we’ve got race, we’ve got LGBTQ and then disability sort of fell off.”
Growing up in Dublin in the 1970s as the eldest of three siblings, Casey was not aware of her visual impairment until she was 17. Although she couldn’t see anything more than a few inches away from her face from a very young age, she thought she had the same vision as everyone else.
Her father, an entrepreneur in the printing industry, and her mother, a former lawyer, decided not to tell their daughter about her condition. They wanted her to go to school with “no-labels, not defined by your disability”, according to Casey, who therefore grew up with no specialist help, and “no interaction with the world of disability at all”.
“They wanted me to have big dreams, not to be limited,” she says. “They began it that way, and I seemed to cope.”
It wasn’t until she was at the eye specialist’s with her sister Hilary, who is three and a half years younger and has the same condition, that she found out. Up until then, her parents had said that her regular eye appointments were just play-acting to comfort her sister, who was aware of her own ocular albinism.
She had even worse vision, and “needed more than I did, it seemed at the time”, which is why she was told about her condition from a young age when Caroline wasn’t. “It seemed like one strategy for one child and one strategy for the other,” she says. They are both doing “exceptionally well”, despite the difference.
That day, the doctor happened to ask Casey how she’d be celebrating her 17th birthday. She told him she wanted driving lessons, at which he turned in astonishment to her parents and asked: “You haven’t told her yet?”
“I remember looking at the doctor and just going, ‘Seriously?’” Casey recalls, as her mother sat “absolutely roaring crying” beside her. “It felt like water off a duck’s back; it didn’t really land. Because I had lived this life so far, so – ‘What are you talking about?’”
Although she would have appreciated understanding why she couldn’t “see the boys” at teen discos, or knowing she wasn’t actually bad at sport (she just couldn’t “see the flipping ball!”), Casey doesn’t hold this against her parents.
“They were slightly bonkers, living in a conservative life,” is how she describes her “unique family”. But her late knowledge of her condition may have led to her disguising it for so long.
As she says in her 2010 TED Talk, “Looking Past Limits”, on her extraordinary secret:
“For the next 11 years, I swore nobody would ever find out that I couldn’t see, because I didn’t want to be a failure, and I didn’t want to be weak.”
How can you hide being unable to see?
Casey notes that she doesn’t appear severely visually impaired – indeed, sitting across the table from her, I feel like we’re making eye contact for most of the interview, and her eyes are always focused on me.
“I see so much less than I appear to,” she smiles. “I’ve worked out how to do all the things that I do so I could get away with it.”
To disguise her condition, she used distraction, jokes and a show of quirkiness or clumsiness – and hopped quickly from job to job.
After studying archaeology and classics at college, she started working on excavations as an archaeologist at 21 – but she broke things on digs and knew her sight wasn’t good enough. She laughed it off with her colleagues, not knowing how to tell them about her disability.
“I’m blonde as well, naturally blonde, [so] I always felt that I came across as this kooky, blonde person, because I was always trying to compensate, sometimes with humour,” she recalls.
Then she travelled around Australia, working in a nursing home and picking fruit – laughing it off every time she picked the wrong thing.
“Every single time I’d do it, I’d laugh, I’d find a way out, and I would do what I needed to do,” she says.
Casey also managed a restaurant but would slip when working. She became a masseuse, then trained in horticulture and set up a landscape gardening business, until her taste for entrepreneurship finally led her to business school.
Even as a child, she had set up little businesses – painting horse jumping poles with her cousin, and painting walls. “I’ve always wanted to be employed, and I’ve never, ever seen my sight as an issue,” she says. “And that’s why I think that coming to terms with my sight has always been confusing, and it still remains confusing.”
When she applied for a management consultancy job at Accenture in 1997 – the same year she registered blind – she put a very light pencil tick in the box on the application asking if she had a disability.
She wore a red suit to her interview, because she didn’t see the small print demanding navy or grey office wear, and she walked into a glass door. “But nobody asked why, because they were focusing on my results,” she says. She got the job.
For two and a half years in this high-powered world, she hid her impairment. Even very few friends knew she was registered blind. “Most of them believed that I just had severely bad myopia, that’s it,” she says. “And I was flippant about it. Did I want to say it? Yes. Did I know how to say it? No. Did I see anybody like me in the world? Not really.”
Casey only came to terms with the reality of her situation when she went to the doctor in 2000. “It was one of the transformative moments in my life, because I realised that I was making my life worse for myself,” she says. Her doctor told her she had damaged her eyes, and to take time off. He also warned that she was “making it bigger in your head”, and advised her to “think about what I was, who I was and what I wanted”.
It was this appointment that transformed Casey from a corporate staffer with a secret into a disability campaigner, leaving her job and bringing the message of inclusivity to businesses around the world.
She has since worked with 450 companies, over a thousand CEOs and spoken to half a million people around the world “to ask business to see the value and worth of the one billion people in the world with a disability and their families”.
Fundraising stunts have included riding an elephant across 1,000km in India solo, and a horse trek in Colombia to the One Young World young leaders summit in Bogotá for the same distance in September.
Finishing her breakfast before a string of meetings she has scheduled in central London, Casey reflects on what she’s learned since disguising her disability.
“I discriminated against disability myself – my own… [Now] I’ve started to understand the massive exclusion, discrimination, alienation, misunderstanding and apathy that exists around disability,” she says, buttering her toast before standing up to hug me goodbye.