'Disability is uncomfortable. Let's have an open conversation'

This article originally appeared on The Guardian. 

Caroline Casey didn’t know she had been born legally blind until she was 17. It seems remarkable, but she insists she had no idea that other people could see better than she could – no further than a blurry three feet in front of her. She found out on her 17th birthday, after telling an optometrist that she was going to learn how to drive. He turned to her mother and said incredulously: “You haven’t told her”.​

The Irish entrepreneur is the founder of business inclusion company, Binc, and is demonstrably passionate about the need to put disability on the global business agenda. Her story – told in 2007 at a Ted Talk now watched by two million people – is one of defiance. As an adult, she kept her disability hidden for 11 years, jumping from careers in archeology, to restaurants, to being a masseuse, to a landscape gardener. She went to business school and worked as a management consultant with Accenture, but eventually her eyesight declined to such as degree that she had to admit she needed help.

“I came out of the closet,” she says. “I realised these eyes aren’t going to get better. It doesn’t matter if I work harder. I am me. And I’m responsible for the life that I lead.”

Designing for disability: the businesses breaking down barriers

 Casey is about to embark on a 1,000km horse ride through Colombia to launch her global business campaign on disability, #valuable. It’s not her first extreme adventure – she trekked 1,000km through India on an elephant in 2001 after leaving Accenture, and took part in Around the World in 80 Ways with double amputee Mike McKenzie and blind adventurer Miles Hilton-Barber in 2002. However, she is keen to emphasise that “this is not a blind endurance story”, but rather the first spark of a conversation.

“There are a billion people in the world that experience disability. If businesses could see the value of those people as consumers, as suppliers and as talent in the community … I think we could go a very long way in eradicating exclusion. Because the issue of disability [in the world] is not improving, not really.”

As part of the campaign, Casey is asking 500 businesses to put disability on their boardroom agendas at least once before the end of 2018. She’s also looking for “the Sheryl Sandberg, or Bono, or Al Gore of disability” – someone outside the community who will champion the cause. “We can find people to stand for water. And we can find people to stand for gender. And we can find people to stand for race. Why not us?” Partner charity One Young World, which is hosting its summit in Bogotá where Casey will end her journey, is also launching an ambassador programme.

The benefits of engaging with the disabled community should be obvious. US-based Return on Disability Group found the disability market to be the size of China (pdf), with an estimated 1.3 billion people and a combined disposable income (including family members, friends, and caregivers) of $8 trillion (£6.2 trillion). Recent findings also suggest that the US is losing more than $150bn (£116bn) in tax revenue annually because of the number of people with disabilities not in work. Up to half of the businesses across the OECD pay fines (pdf) rather than meet quotas on disability in employment.

In the UK, the Disabled Living Foundation estimates only half of disabled people of working age are in work, compared with 80% of the non-disabled population. It’s estimated that a 5% improvement in those figures would increase GDP by £23bn and add £6bn to the Exchequer by 2030. Despite only 17% of people being born with their disability, and the vast majority acquiring it later in life, it’s still seen by many as a sideline issue.

“I’ve been in this space for 18 years, Casey says. “I’ve raised a lot of money, I’ve set up not-for-profits and methodologies. I’ve spoken to thousands of business leaders – and half a million people around the world – on this topic. I never thought when I began this, that the issue of disability in business wouldn’t really change in 18 years.”

“I’ve been in this space for 18 years, Casey says. “I’ve raised a lot of money, I’ve set up not-for-profits and methodologies. I’ve spoken to thousands of business leaders – and half a million people around the world – on this topic. I never thought when I began this, that the issue of disability in business wouldn’t really change in 18 years.”

When asked why she thinks progress in this area has been slow – at a time when there are government initiatives to improve gender diversity, for instance – she says there are several factors: “The uncomfortable truth about disability is it’s uncomfortable. Most of us are worried we’ll handle it wrong, say the wrong thing, do the wrong thing,” she says.

“I still think there’s a lot of sympathy and a lot of charity,” she continues. “That’s not very empowering, although we do need the services charities provide. The other part of it – and it’s such a horrible thing to say – is the idea that the disability market is not seen as valuable. I think businesses don’t see they can do business with disability.”

Casey admits she’s only had three horse riding lessons and is woefully unprepared for the physical strains of the journey ahead. But she’s determined to show she’ll “go to the ends of the earth” to start this conversation.

“I don’t care if my butt hurts – and it’s going to,” she adds. “We want to position disability equally within the inclusion and diversity agenda in business. Not more than, just equally. Disability is intersectional – it crosses gender, race, religion. It’s everywhere.

“Let’s have an open conversation. Not everything we face can be resolved. But if we don’t even face it, we certainly can’t solve it. We’ve got to try.”

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