Still learning to live with the elephant in the room

THE SATURDAY INTERVIEW:Ten years after her first initiatives as a social entrepreneur, Caroline Casey is now exporting her Ability Awards concept to Spain and beyond. But – with her eyesight still deteriorating – she is also having to adapt the way she works. Not for the first time

CAROLINE Casey’s not-for-profit organisation, Kanchi, is based in an apartment in a lane off Baggot Street in Dublin. There are offices in bedrooms and desks in the sittingroom, and when she introduces her staff it’s as though she is introducing close family members, so the homely setting is appropriate. She chats about the managing director’s pregnancy bump, another colleague’s obsession with Cheryl Cole, and the fact that one of the male staff – “he makes my life so easy” – used to live across the road. “We stole the neighbour!” she says, flashing her winning smile. Then we go into another bedroom-without-a-bed to talk about the hectic 10 years she has had since first beginning to accept that her severely impaired vision – she is registered as legally blind – would mean a major shift in her professional and personal ambitions.

One of the more challenging aspects of interviewing Casey – the woman who raised hundreds of thousands of euro riding an elephant 1,000km across southern India, the founder of the 02 Ability Awards, Ireland’s first Ashoka fellow, the Global Youth Leader of the World Economic Forum, social entrepreneur – is that it’s very difficult to get a question in edgeways.

You get the sense, and it comes through in every interview she has done over the past decade, that there is not enough time in the world for Casey to do all the things she wants to do, or to say all the things she needs to say. In some ways she is the dream interviewee; she stops talking only to take a breath, is always articulate, and anticipates all the questions you might have asked if you ever got the chance. You walk away with the feeling that what with her speaking engagements, her global networking and her apparent inability to sit still, she probably gets more done in one day than most of us do in a month. It’s inspiring and a little overwhelming. After talking to her for an hour and a half, a person could develop a serious inferiority complex. The woman fizzes and crackles with positive energy.

Kanchi staff are in the middle of organising the fourth 02 Ability Awards, which Casey conceived as a way to reward businesses for the employment and inclusion of people with disabilities. It’s a gala occasion, televised by RTÉ and the attendees include a sprinkling of celebrities and CEOs. Kanchi’s and Casey’s biggest achievement to date has been to place disability issues firmly onto the boardroom table. Kanchi used to be known as the Aisling Project until the organisation took on the name of the elephant she rode in India, so that the brand would travel better internationally. Businesses work closely with Kanchi, taking their lead from the disability standards model that Casey designed on the basis of the ISO 9000 business approach. Since 2004, around 100 companies a year have radically changed their policies to ensure that they harness the potential of people with disabilities.

But, naturally enough, Casey wants this figure to be 1,000 and eventually the plan is for “every company in Ireland to be an ability company”. Later this month, the Ability Awards will be launched in Spain, and Kanchi will oversee the franchise with 02’s parent company Telefonica as the main sponsor. Given Casey’s track record of achievement, it seems a dead cert that more global franchises of the awards will be rolled out internationally over the next few years. She is one of those people who, instead of just talking about changing the world, gets up and actually does it however tough the doing of it turns out to be. And when you are legally blind, spending much of your life pretending not to be, life can get very tough.

SHE OWES IT all, she says with a laugh, to Johnny Cash and a song he sang called A Boy Named Sue. The story told in the country song is of a boy whose father named him Sue before abandoning him as a three-year-old. The negative impact the female moniker has on his life leads "Sue", now a man, to track down his father in order to punish him for giving him the troublesome name.

When Sue is about to shoot his father, he gets an explanation: “And he said: ‘Son, this world is rough/ And if a man’s gonna make it, he’s gotta be tough/ And I knew I wouldn’t be there to help ya along./ So I give ya that name and I said goodbye/ I knew you’d have to get tough or die/ And it’s the name that helped to make you strong.”

Stillorgan, Co Dublin, is about as far away as you can get from Gatlinburg, Tennessee where A Boy Named Sueis set but Casey's point is that her parents' decision to send her to school without explaining to her that she was born with ocular albinism, an incurable eye condition that leads to severe visual impairment, has been the making of her.

“Dad and Mum knew I was visually impaired but they thought, ‘let’s see what she can do if she doesn’t know about it’. They didn’t want me going to a special school and ending up making baskets which, considering I was born in 1971, might have happened,” she says. “Let her not know, they said, and let’s see if she can survive. So off I scoot and I survive.” Her younger sister Hilary was born with the same problem but, because her eyes were turned in, there was always an assumption that her eyes were worse. When the sisters would go to eye specialists, Casey says she always believed she was there just to support her little sister.

Sometimes she would think, “why do we always talk about Hilary’s sight and not mine?” but then would carry on incorporating the various coping mechanisms she and her parents came up with into her daily life, while continuing to believe there was nothing much wrong with her at all.

As a parenting experiment, it paid off. She has said it all countless times before, but rattles it off as though it’s the first time. How she could and still can read with her nose pressed to a book but couldn’t see the blackboard. How nobody wanted to pick her for the hockey team but it never stopped her believing that she had the potential to be an excellent sportswoman. How her Dad taught her to sail. “I was put in a little Optimist [dinghy] on Lough Derg. Dad said, ‘Do you see that rock?’, and I said ‘Uh, no’, and he would say, ‘Just go in that general direction, feel the wind in your face.’ I think that line, ‘feel the wind in your face’, defines how I learned to live differently. You do a lot of seeing in your head, a lot more than you might think,” she says.

On her 17th birthday, her parents gave her a driving lesson, because their daughter was sailing through school and life in general and in their sighted eyes her vision didn’t seem reason to treat her any differently. Coincidentally, the sisters were scheduled to see an eye specialist on that day. Casey went along, as usual, thinking she was supporting her sister. When the specialist noticed that it was her birthday, he asked had she anything special planned and Casey told him that they were going down to the Garda station to get the forms for her provisional licence. “That’s when I found out I couldn’t drive and not only that but it was the first time I found out there was something really wrong with my eyes,” she says.

And yet Casey still carried on as though there was nothing wrong with her eyes, making only the occasional concession to her disability. She availed of special exemptions from the Department of Education which meant, among other things, that her Leaving Cert exam papers were in a larger font size. She went to UCD to study archaeology under the formal label of “disabled” but very quickly decided that she would manage her university career by telling as few people as possible. Humour was her biggest coping strategy. Friends would alert her to their location in the student bar by making beeping noises, and she followed “people with bumps on their chest” so she would find the ladies’ toilets. People might have known her sight was bad but they were never allowed to find out exactly how bad.

“All this time I thought that specialist was off his head,” she says. “I never really believed what he said. I was going to prove him wrong. I was going to drive. I was going to be an archaeologist . . . I had conversations with my eyes where I would say, ‘Feck you, you are not going to hold me up. You are not’.” She tried working in archaeology after leaving college but realised, with the gentle guidance of one man she worked for, that it wasn’t going to work.

She travelled the world, bungee jumping and hang-gliding, working for seven weeks picking mandarins in Australia to save up money to go diving, only to find out her sight meant she couldn’t go on the trip. Back home, she studied horticulture and set up a landscaping business, eventually accepting that a gardening career wasn’t going to work either.

She reinvented herself then as a business student, emerging from the Michael Smurfit Graduate Business School with first-class honours in her MA and an award-winning thesis in change management. It was around this time she formally registered as blind. “I did it for the bus pass, to be honest”.

And while she ticked the visually impaired box on an application for a job with top management consultancy Accenture, even if it was in faint 2H pencil, she got the job and when her condition came out in the lead-up to a medical exam the company, impressed by her varied CV and academic excellence, kept her on.

Casey was a top management consultant for two years, until the pressure of pretending she could see more than she actually could took its toll.

She was one of the highest-performing staff members, but she went to the HR department when her sight began to deteriorate and confessed, “I’m banjaxed”.

The company wanted her to stay but when she went to yet another specialist and he said, “I think you should think of doing something different with your life” it marked the beginning of her coming out of the disability closet.

She was shocked by the specialist’s suggestion. And angry. She said to herself, “I went to see an eye specialist, not a counsellor.” And then she ran out of the Blackrock Clinic in Dublin all the way to Sandymount looking for her mother, whom she found in the village. “I remember sitting in the car bawling my eyes out and saying, what’s wrong with me. I mean, I’d never been defined by my sight.”

When she had calmed down slightly, she went for a run – running has always been a mental release for her – on Sandymount Strand. She fell on a rock that on her usual outings she would easily have avoided and as she sat there cursing in the pouring rain, she thought about what she might do. She thought about how she loved to travel. And elephants came into her head. Then she remembered a Mark Shand book she had read about his journey across India on an elephant.

She went home, plucked the book off the shelf and it opened, she says, at a page with two blind baby elephants linking another elephant. “Then I knew,” she says. “I could do the trip for myself to figure things out, and I could also raise money for the blind.”

She was convinced corporates would give her money, but it turned out “they didn’t want to touch me with a barge pole”.

“Then I started thinking about the whole big problem of disability and business, how almost 80 per cent of disabled people were unemployed in this country, how I had been ashamed of my sight myself. I remembered what the specialist in Blackrock had said: ‘Why are you ashamed, why are you frightened of being who you are?’. I had been running away from it. It started me thinking about ways to change people’s perception of disability and while I was researching elephants and the India trip I was researching that whole area as well.”

It was a rollercoaster of a time in Casey's life. Through normal fundraising methods, she managed to raise £67,000, but she had promised £250,000 to Sight Savers International and the National Council for the Blind. The prospect of letting these charities down terrified her. But everything changed when she appeared on The Late Late Showwith Mark Shand and was on the cover of this newspaper's Saturday magazine in December 2000.

The following Monday, she got a call from Dermot Desmond. The words tumble out of her even more quickly now, the story of probably the most influential connection she has made over the past decade. She says Desmond called and said: “I saw you, and you make sense, and I think you are great, and I believe in you.” At that point, Casey says, she dropped the phone and “bawled”.

“He said, ‘I am sending you a cheque’, which was like, ‘Oh sweet Jesus’, and he got the cheque over to me with a note that said, ‘Elephant girl, if there is anything I can do for you in the future, just let me know.’ That was the day I chose to do what I am doing. I went to see him to say thank you, and to ask him what was the problem with disability and the corporate world.” In response, before she went to India, Desmond gathered 16 of the most influential business people in the world around a table so she could ask them why disability wasn’t being seen as valuable to business. “They helped me to find out and create a model that changed that.” And with the e-mail addresses of the country’s most successful CEOs in her pocket, she exceeded the total she had pledged by a couple of hundred thousand Irish pounds.

THESE DAYS, CASEY has very different conversations with her eyes. Earlier this week she tripped down some stairs, and instead of a “feck you” to her eyes, the internal dialogue went: “Ah Caroline, you know better, should have been more careful”.

Her approach to how she runs Kanchi has changed too. Up to now, she says, it has been too “Caroline Casey-focused”. This realisation led to her setting up a sounding board of 30 people designed to challenge almost every aspect of Kanchi strategy. The Ability Awards also took a break over the past couple of years. Staff have been putting together a how-to manual, so the awards franchise will be able to take off globally. She has also been investigating how Kanchi can become more of a business rather than a not-for-profit enterprise, channelling profits back into the organisation instead of “flying by the seat of our pants all the time . . . I am not a natural fundraiser”.

She feels the need to take it a bit easier now. She could do, she says, with practising meditation. Or taking up yoga. Anything to slow herself down even the tiniest bit. She is allowing herself a month’s holiday this year, which is pretty much unheard of on Planet Casey, and is planning to return to India in November to see Kanchi, the elephant who helped start her on this journey.

This gear change is mainly for the sake of her sight, which has deteriorated again in recent months. She has stepped down as CEO of Kanchi and is now operating simply as founder, dealing with overall strategy rather than the more gruelling operational side of the business. “It doesn’t mean working less,” she insists, before leaving for one of her regular speaking engagements. “I will just be working differently.”

Whether she will actually slow down is anybody’s guess. At any rate, her slowing down still means operating at a faster speed than mere mortals. She will continue to get more done than the rest of us manage on a very good day. The girl can’t help it.

BORNDublin, 1971

EDUCATION Mount Anville School; UCD; Michael Smurfit Graduate Business School

CAREER HIGHLIGHTS

2001Trekking 1,000 km across India on an elephant to change perceptions about disability

2002Raising €1m euro for charities as part of the "Around The World in 80 Ways" campaign; Named one of Junior Chambers International's "Ten Outstanding Young People of the World"

2004The first 02 Ability Awards take place

2006Appointed a Young Global Leader of the World Economic Forum and becomes the first Irish Ashoka fellow for social entrepreneurship

The 2010 Ability Awards ceremony takes place in Dublin in May, and the Spanish Ability Awards will be launched later this month