Big Vision
Caroline Casey, a registered blind entrepreneur and self-described "troublemaker", aims to shake up the business world by making it reconsider its attitude and commitment to disability. She talks through her mission - and the role PR professionals can play in advancing inclusion…
PRs need to start communicating disability as a point of insight, innovation and invention and stop seeing it only as something inspiring and overcoming.
In October 1999, a then 28-year-old management consultant named Caroline Casey asked to see her HR director for a chat. At that time, Caroline was working hard and playing hard for Accenture, the Irish multinational, and one of the Fortune 500. She was two and half years into the job, and on the up. There was nothing demonstrably out of the ordinary about her, although her dress sense was often unusual; colours didn’t match. But Caroline was harbouring a secret. A huge, life-changing secret, that in time would lead to a momentous, inspirational journey. “I said, ‘I really need to talk to you’,” Caroline recalls, but I can't see you right now. "No problem", said her HR director, "We'll reschedule." “No,” repeated Caroline. “I mean: I literally can't see you right now.”
Caroline was born blind, with a rare genetic condition known as ocular albinism, which severely limits her vision. Her parents made the decision not to tell her; instead, in something of a bold experiment, they decided to send her to a regular school, to see how she got on.
It was only when she asked her dad for driving lessons on her 17th birthday, that Caroline finally accepted the truth. “Growing up, they did not want me to be defined by labels and placed in a box on account of my disability,” she told Taskque.com. And yet, as she says, the vision beyond the hand in front of her face, is a “complete blur”, as if Vaseline had been smeared all over her spectacles. “I’d been hiding the secret for 11 years, and I can tell you that's what makes me a great salesperson – because you learn how to get around stuff.”
She can laugh about it now “What does that say about the Accenture management consultants, that they didn't cop they were employing a blind person – or maybe I was just a great actress!” But nevertheless, Caroline assumed she was taking a big risk when she “came out of the closet”. That if she told them she was blind, they’d immediately let her go. And the statistics are hardly encouraging: “Four out of five of the 770 (7%) of CEOs who have a disability are in hiding,” she says.
No wonder: according to the Office for National Statistics, the average disability pay gap in the UK stands at 12.2% – if the person has a job at all: Scope found that fewer than half of disabled people (who make up 1.3 billion of the world’s population) are employed. Meanwhile, just 4% of companies are focusing on disability inclusion initiatives. And that’s something Caroline wants to change. She is fond of quoting the late, great Maya Angelou: “There is no greater agony than an untold story inside ourselves.” But, as she says, it needn’t be that way.
LIFE-CHANGING TRIP
Back in 1999, Accenture packed her off to an eye specialist, who in the course of the examination asked her what she had wanted to be when she was a girl. Her answer: Mowgli from The Jungle Book. This gave her an idea of what to do next. Having unburdened herself of her secret, she took some time off work to fulfil one of her childhood dreams. Mowgli-style, she trekked 1,000km across India on an elephant’s back – and in so doing, became the first Western female "mahout" (elephant handler). She also raised enough money to fund 6,000 cataract operations in the process.
On her return, and emboldened by the trip, she plunged into a new life as a social entrepreneur. It was the start of what she calls her “passionate odyssey” for the inclusion of people with disabilities in society - “13 million of them, with £249 billion spending power”.
For the past two decades, she has launched several initiatives and organisations dedicated to stripping away the prejudice surrounding disability: Kanchi, the company she launched in 2008, which promotes hiring people with disabilities, was named after the elephant on which she’d trekked through India.
We’re really uncomfortable with the truth that we are really uncomfortable with difference,” she says. “But in society and in business we need to own that truth as part of being human. If we don’t own it, we’re not going to get over it.
This is the critical mass that could change the world,” she says. “Not just for people with disabilities but for all of us, because I feel like if we get disability right we get it right for everyone. We may not like everybody and that's okay. But we need to respect somebody else's experience.
In January 2019, she launched the Valuable 500 at the World Economic Forum in Davos, with the aim to get 500 CEOs and brands to put disability inclusion on their agenda – or as she says, “to get over their fear about difference”. In May this year, that target was met, and Valuable 500 is now the largest ever CEO collective focused on disability business inclusion, with the likes of Sir Richard Branson, and Unilever’s Paul Polman onboard.
Her initiative will now move into phase two of the campaign: “activating the influential network we have in order to create change,” she says, explaining that the transformation programme for disability inclusion in the 500 companies are formed by six pillars: C-suite; customer; culture; research; reporting and representation.
Valuable 500 is also part of the recently launched WeThe15 campaign, which aims to be the biggest ever human rights movement to end discrimination against persons with disabilities, publicly campaigning for disability visibility, accessibility, and inclusion. This is an honour that Caroline is incredibly proud of: to represent the world of business in a movement that will “transform the lives of the 1.2 billion people in the world with a disability – that’s 15% of the whole world.”
As she told Taskque.com, “We don’t need to fix disabled people – we need to fix the business system.” Automatic doors and flexible working hours are just two ways businesses can empower people with disabilities. “To promote disability inclusion, businesses must no longer treat it as the poor relation of D&I,” she says. “It must be given equal focus, and business leaders must talk about it with a willingness to act, from employee to customer and all that lies between.” As she correctly points out, the business community’s reaction to Covid-19 has indeed demonstrated it is possible to make changes almost immediately – there are no more excuses. She also reminds us that disability ultimately affects all of us: “We are all temporarily-abled… If we’re going to grow old then we’re all going to have bits of us that don’t work so well in the end.”
PRs need to start communicating disability as a point of insight, innovation and invention and stop seeing it only as something inspiring and ‘overcoming'
And she has some advice for those who are well placed to spread the message. “PRs need to start communicating disability as a point of insight, innovation and invention and stop seeing it only as something inspiring and ‘overcoming’,” she says, explaining that typewriters and SMS texting are both prime examples of inventions that were born out of a way to aid disability. “We need to normalise disability, and referring to how the disability experience has contributed to universal mainstream design and functionality can help us understand and move away from the old stereotypes.”
An important route to destigmatising disability is through telling stories in “authentic ways”, particularly those from the C-suite, she says. “We need role models to break the leadership silence. Recent research from Tortoise has found that no members of the FTSE 100 C-suite declare a disability, and global EY research showed that four out of five leaders hide their disability. Businesses will never know the true representation of their employees with a disability if they themselves cannot be open.”
And this is not just about ‘doing the right thing’ – it makes complete business sense too, says Caroline: “By being inclusive, companies can unlock the $13 trillion spend power of those with disabilities, employ the best talent, open up markets via accessibility and greatly improve bottom line and share price with ESG credentials.”
Going forward, Caroline plans to continue her role as “a troublemaker. I’m passionate about freedom, the magic of possibility and connection,” she says. “The best thing about being a human is our hearts, our hope, our optimism our energy, and our collective drive. And the one thing that makes us the same, is that we're different.”
Disability campaigners we love
Mike Adams OBE
Adams is the founder of Purple, which seeks to bring disabled people and business closer together. The annual Purple Tuesday event sees stores, companies, and organisations making pledges and further commitments towards improving the disabled customer experience. Adams is listed in the Shaw Trust Power List of the UK’s top 100 most influential disabled people.
Dame Tanni-Grey Thompson
Grey-Thompson is not only the winner of 16 Paralympic medals, including 11 golds, but also a crossbench Peer in the House of Lords, keynote speaker, campaigner and mother. She draws on her personal experiences, and those of other disabled people during debates in the HoL to champion issues around disability rights, welfare reform, and sport.
Adedoyin Olayiwola "Ade" Adepitan OBE
Adepitan is perhaps the best-known disabled presenter on British TV. He was a member of Britain's Wheelchair Basketball team at the 2004 Paralympics. Since then, he has campaigned for greater access to sport for disabled people, instilling a strong and persistent message of hope within the young black disabled community. Adepitan is listed among the 100 most influential Black British people.
Robin Sheppard
Having co-founded Bespoke Hotels back in 2000, Sheppard has improved access and experiences in his hotels so that disabled people can enjoy life to the full, without fear or frustration. He has set an example for other hoteliers and, in 2016, the Bespoke Access Awards were launched to champion hotels delivering better experiences for disabled customers.
Alice Wong
Wong is the Founder and Project Coordinator of the Disability Visibility Project (DVP), which has brought together around 150 oral histories of people living with disabilities across America. She also works with Disabled Writers - a resource designed to help editors connect with disabled writers and journalists.
Liz Carr
Carr is best known for playing forensic examiner Clarissa Mullery in the BBC crime drama Silent Witness. Off-camera, Carr has campaigned for improving disabled access on public transport and has been heavily involved with 'Not Dead Yet UK' - a group of disabled people and allies who oppose a change in the law relating to medical assisted suicide.
Victor Pineda
While still at graduate school, Pineda became the youngest government delegate to participate in the drafting of the United Nations Convention on the Rights of Persons. He founded and co-chairs the Cities for All Initiative and the Global Network for Disability Inclusive and Accessible Urban Development. Pineda is also a leading campaigner for improving disabled access at events.
Nidhi Goyal
Goyal is an activist and advocate for issues around sexuality and reproductive health and rights for women and girls with disabilities. She has also highlighted the need to address the unique forms of violence that women with disabilities face. In 2018, Goyal was named Superwoman of the Year by Hindi TV channel APB News channel.
Jessica Kellgren-Fozard
Kellgren-Fozard is a deaf and disabled activist, who has attracted a huge following for making videos on disability awareness, LGBT history, and vintage fashion In 2019. she won the Blogosphere Awards' Vlogger of the Year and currently has 878,000 subscribers (and counting) to her YouTube channel.
Chai Rachel Feldblum
Feldblum was the lead attorney on the Americans with Disabilities Act, which became law in 1990. She is also an author and activist for disabled and LGBT rights. In 2009, she was appointed by Barack Obama as commissioner at the Equal Employment Opportunity Commission. Last year, Feldblum became part of Joe Biden’s presidential transition Agency Review Team.