See no limits

Posted on 28 June 2013

Despite being born blind, Hein Wagner lives a life of high adventure, competing in endurance events around the world. His unique outlook will make you wish you could see the world the way he does.

Words Will Sinclair Photographs Richard Keppel-Smith
(Published in issue 15 of Family magazine.)

Take a look at Hein Wagner’s list of adventures and accomplishments, and the last thing you would think is that he’s in any way disabled. It’s only when you find out he’s blind, that he was born with Leber congenital amaurosis, an eye disorder affecting the retina, that you’ll do what most sighted people do – start acting all awkward around him.

He won’t mind. He’s used to that. ‘Sometimes when people meet me – or any blind person – for the first time, they’ll think that there are certain things I can’t do,’ he says. ‘So they’ll start trying to overcompensate for that. But really, it’s best if you just treat me as a “normal” person, and realise the only thing I can’t do is see!’

It’s hard to argue with that. Looking at his CV, it becomes very clear very quickly that Hein has made an art form out of turning setbacks into triumphs. He can’t see, yet he’s driven a car at over 320km/h. He’s blind, yet he’s completed gruelling endurance events such as the Absa Cape Epic cycle race and the Cape to Rio yacht race. He was born blind, yet he’s gone skydiving, climbed mountains and completed marathons.

A perfect example of his positive attitude came in March this year. Hein was set to travel to Antarctica to compete in a marathon there, when his trip was called off at the last minute. ‘I was packing the last of my clothing when I got an email saying the trip had been cancelled,’ he says. ‘The boat we were going to travel on had had an encounter with an iceberg in the Arctic Ocean, and was no longer seaworthy.’

Instead of kicking his heels and cursing his luck, Hein put that spare time to good use. ‘I did some training, and gooi’ed in the Cape Argus Pick n Pay Cycle Tour!’ he says. ‘My riding partner Alwyn de Kock called me up and said that his son, who was supposed to cycle with him, couldn’t make it. I phoned the race office and asked if they would allow a substitute, even though the cut-off date had passed. When I sent them the email explaining why my application was late, they said that in all the years they’d never had such a good excuse for a late entry!’

Even though Hein and Alwyn only have one ‘good’ eye between them (Alwyn is blind in his left eye), the pair completed the race in 3h25:00.

Background story
Before he became a full-time adventurer, Hein worked in IT, heading up a sales team at Mark Shuttleworth’s company. ‘It was quite a weird sensation for me,’ he says, ‘giving guidance to people who are sighted!’

He continues to use state-of-the-art technology to help him lead a normal life. ‘You’ll have to put inverted commas around that “normal”’, he says. ‘But that’s exactly right. To give you an idea: when you called me, my iPhone 4 told me your number. This little device is completely accessible for a blind person: I use it for Facebook, Twitter, email, SMS, News24, IOL, whatever.’

Hein also uses a device called the Eye-Pal, which uses a camera to scan documents and ‘read’ them out to him. ‘You can hand me any library book, and I’ll put it in the machine, press a button and it’ll read the book to me. Technology has made the world more accessible for blind people. There are still many gaps, but it’s a lot better than it was 20 years ago.’

Hein’s the first to admit, though, that technology comes at a price. ‘I’m fortunate that my circumstances allow me to buy these things, but I have many blind friends who simply don’t have the money to buy software that will enable them to do basic things like reading a newspaper,’ he says. That frustration inspired Hein to set up The VisionTrust, a foundation that – in his words – ‘aims to make the world as we know it more accessible to people living with disabilities’.

All about the data
For a sighted person, it’s hard to imagine how a blind person like Hein experiences the world – let alone his outdoor adventures. When we’re on the top of a mountain or in the middle of the ocean, the scenery, the view, overwhelms our senses. Take that view away, and what’s left?

‘Let me give you an example,’ says Hein. ‘I grew up in Cape Town, and I’ve climbed Table Mountain about six times from various sides, just to get a 3D perspective of what it looks like. As a blind person, you’re faced with the sheer size of the mountain, simply because you have to get yourself up it! And when you’re on the mountain, you feel and smell the fynbos, the rocks, the environment – and that creates an honest reflection of what it looks like. I’m sure if I were to see Table Mountain up close tomorrow, I would recognise it.

‘Similarly, I’ll only get a real perception of Antarctica when I’m there, experiencing the elements, the cold, the textures, the ice, the snow, the sludge, the mud, the rock formations. That’s when my other senses kick in, and that combination paints the picture.
‘Think of it as an Excel document,’ he says. ‘You will look at the pie chart on the screen, but my voice software can’t interpret the graphic. I have to look at the data.

‘That’s how I experience things: looking at the data to understand the whole picture, its size, its enormity, its relation to the rest of the world.’

What is Leber congenital amaurosis?
Hein’s blindness is caused by a condition that affects the rods and cones in the retina – the parts of the eye responsible for light and focus. Like all people with Leber congenital amaurosis (LCA), he was born with the condition.

Breaking down the condition’s name helps to explain it: ‘Leber’ refers to Theodor Leber, the 19th-century German ophthalmologist who first identified it; ‘congenital’ means it’s passed down genetically (both parents carry one gene for the disease paired with one ‘normal’ gene); and ‘amaurosis’ comes from the Greek word for ‘obscure’, pointing to the loss of vision.

Children born with LCA usually show signs of having the disorder when they’re very young: about two or three months old. The retina may seem normal when it’s first examined, but soon the telltale signs will appear: the baby will start using his or her hands or fingers to rub or press on their eyes (this is called an ‘oculo-digital reflex’), and their eyes will also shake or move about involuntarily (this is called ‘nystagmus’). ?An examination by an ophthalmologist might also pick up slow reaction of the pupils and an abnormal appearance of the retina.

Despite years of research, there’s still no treatment or cure for LCA – but the good news is that the condition is rare, with some counts having it at just three cases in every 100 000 births.

Roll of honour
A brief summary of Hein Wagner’s adventures and achievements (so far…!)

1993
Completes the Cape to Rio yacht race
‘That was a profound journey: I came face to face with the enormity of nature!’

1998
Member of the South African blind cricket team that wins the Blind Cricket World Cup

2005
Skydives from 3 048 metres
Sets the World Blind Land Speed Record (242,32km/h)
‘As a youngster, I’d always wanted to drive a car. And if you’re going to make the effort to find someone who’ll get in a car with you, you may as well push it!’

2006
Cycles solo for 39km
Completes the cycling leg of Ironman Korea
Completes the New York City Marathon

2007
Completes the Hong Kong Marathon
‘It’s one thing trying to visualise a city when you’re driving at 60km/h. But running it, smelling it, feeling it? That’s when I get to see it.’

2009
Breaks his own World Blind Land Speed Record (322,52km/h)
‘It was like my senses were on fire. Everything happened so quickly. There was no time for my guide to tell me where to go. He only had time to tell me where I was!’

2011
Completes the Ironman 70.3 in East London (above)
Wins the Blind Tandem category at the Cape Argus Pick n Pay Cycle Tour
Completes the Absa Cape Epic
‘That was the toughest thing I’ve ever done. Just off the scale. The Epic is not designed for tandems, so every moment, for eight days, I was a second away from falling over, and I never knew from which side it was going to come.’

2013
Finishes the Cape Argus Pick n Pay Cycle Tour for the second time
Completes the Ironman in Port Elizabeth

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Published in Cape Epic

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