(3 MINUTE READ) Ultramarathon runner Simon Wheatcroft has been confounding expectations since a genetic eye disease left him blind at 17. Here, he tells his inspiring story to Sylo Magazine.
I first met Simon at a pop-up shop in Old Street station, London last November. The shop promoted IBM Watson, the technology company’s Artificial Intelligence solution, and Simon was there as a brand ambassador.
There were foosball tables, candy machines, technology demonstrations and free alcohol. It was a fun and relaxed event, a far cry from my unusual fare of B2B tech events with grey men wearing even greyer suits.
And in one corner of this pop-up shop -- barely big enough to swing a cat, let alone a skinny-jeaned Shoreditch hipster --stood Simon Wheatcroft. This was a man who I admittedly knew little about. In fact, owing to my rather chaotic and disorganised life, all I knew was that this was a blind guy who could run a bit.
How wrong I was.
In the lead-up to launching Sylo, I thought about the most interesting, inspiring and accessible people I could interview. Simon was one of the first names that came to mind, following our brief conversation on that cold November night. He was very gracious in saying yes to the interview and so I started my preparation into his story.
Here, he reveals his inspirational tale of sticking two-fingers up at society on what you can achieve, including:
How he discovered he was medically blind
Overcoming the challenges of running the four deserts marathon - solo
How he ran from Boston to New York - before then running the New York marathon
His continued battle to fight disability labels
Losing sight from an early age
Simon has a disorder called retinitis pigmentosa, which is suffered by around 1 in 4,000 amongst all age groups in the UK.
The disease, which is almost always inherited - a genetic fault passed on by a parent, causes retinal cells to stop working and eventually die. This, according to RNIB, affects the eye's ability to process the light that enters it.
For Simon, the disorder has been a life-long challenge, but one he has never backed away from.
He recalls that his vision has always been poor but, in his late teens, it deteriorated to a point where he was declared medically blind. It’s hard for others to comprehend this lack of vision of course, but Simon best equates his vision to a snowy TV signal on an analogue TV.
However, before Simon was medically diagnosed, he had no obvious way of knowing if his vision was any better or worse than friends or family. Vision, after all, is very perceptual – much like that blue or gold dress debate -- and Simon wryly notes that he and friends didn’t exactly “sit round and talk about peripheral vision” at school.
In fact, he says that the only time he suspected something was wrong was when playing cricket; having been bowled out, he simply assuming that “these people were pretty quick at bowling".
“When you met the classification [of legal blindness], you can still see,” says Simon of that diagnosis when he was 17, before explaining that his vision has now deteriorated to near total blindness.
“You see faces, but there are bits you miss, like peripheral or central vision. In my late 20s it really shifted and I am now zero degree vision and no acuity. But I still possess light perception.”
He was told of his initial diagnosis back when he was 14, but he admits he was blaise of the diagnosis at the time.
“When someone tells you you’ve got quite impaired vision -- when you feel you can still see -- you think, 'what does impaired vision even mean'?
"You’re told you have impaired vision... but I could still read and I could still see faces. I was playing counterstrike competitively until 20 or 21. That gives you an idea [of the perception of vision], even though I carry this label.”
Work expertise proves societal labels are wrong
Labels are bandied around society and commonly affect ethic monitories and – perhaps less vocalised or reported– those with physical or mental disabilities. In particular, we wrongly assume that blind or disabled people are incapable, and thus they urgently need our assistance.
Simon is a wonderful example here. Coming out of university with a degree in psychology, he has since moved into the complex and fast-moving world of Artificial Intelligence (AI) and machine learning, consulting for IBM and Runkeeper among others. He’s clearly no imbecile.
“From a work standpoint, I was working in IT for ten years; I had a clinical psychology degree. When we first started to pick the modules at university, I did AI, computational neuroscience and I came out with a very different degree to the one I had intended to obtain. During the degree, the running started.
“My public speaking took after university. Now, I am in technology consultancy, working on the future of tech, so what works in five to six years’ time. I am also thinking about doing a masters in computer science. I earn the majority of my money through public speaking, but my future is probably still back in technology.”
Even his website gloriously sticks two-fingers up at society on what he can or cannot do professionally, with the site saying that the runner "is creating the next generation of technology that will continue to enable himself and others to achieve what many bystanders would consider unattainable."
"I carried the label blind, but I had vision. I could see"
Speaking to Simon, it is easy to see why he has forged such a successful career in motivational speaking. He’s measured, insightful and surprisingly uplifting.
But he was candid enough to admit that he, like other visually impaired people, have struggled with societal labels down the years.
"I struggled with it in different ways over the years. I carried the label blind, but I had vision. I could see. Blind is a label which brings lots of connotations of what you’re capable of. I am not so bothered now though because I am absolutely blind."
Yet he notes that other senses have improved, compensating his lack of vision.
“You learn to leverage them more through practice. If you practice anything you can become quite proficient.
Running success steeped in perceived failure
Simon’s running expertise stems, in many ways, in him coming to terms with his condition. As widely reported, at the age of 17, Simon had intended to climb up the Updown Mountain in Yosemite to propose to his then girlfriend (now wife).
He made it halfway but couldn’t go any further, because he couldn't properly see where he was going. This drove his fascination to be better, and to beat those pre-defined society labels.
“I quit climbing that mountain because I couldn’t see. And then you have to come back and accept you are beginning to have constraints on your life, just because one sense is deteriorating.
"[You think] do you really want to live the rest of your life, or do you just check out or say 'no' and quit because you can’t see anything? That’s when I thought I needed to change things.
“At the point I didn’t have much vision, [the label] blind was laying heavy on me. I really needed to go out and redefine what’s possible.
“Blind is seen as “stupid”, that’s quite common belief. So I went to fight against that, I proved that can go to and be incredibly mobile and do things that have never been done.”
He went onto get the highest dissertation in his year at university, and the running (more on that below) speaks for itself.
“I was trying to prove in multiple forms, I can fight against this label society has put on me, and perhaps I have accepted.”
Is the label still an issue, then?
“It still is. I walk into any big company they will be amazed I can write an email….but I can tell you how to do your job. I’d say it isn’t just about being the best, you’ve got to be ten times better for anyone to believe you’re capable of anything. That’s unfair, but that’s just the way it is."
Running - from football pitches to the African desert
Simon confirms that he started out running using a Runkeeper device from goal to goal on a football field. He would run from goal post to goal post and that worked well for a time - until he started bumping into strap dogs. Later, he would run on closed roads, "feeling" his way to the edge of the road if he felt like he was starting to drift.
“It did start on a football pitch and then it transitioned to some roads. It was on those roads I started to think just far could I run.”
This is not to say that it was straightforward; Simon recalls how he would come to feel through grass, bushes and other environment objects to get a sense of where he was. Yet, more painfully, these environmental objects did occasionally include lamp posts and road signs.
"You have to learn where they are by running into them. You don’t make that mistake a second time," he once quipped in an interview with The Next Web.
Soon, he was running 100 mile races, with technology guiding him to go left and right. The Runkeeper app on his phone would give him audio cues for where to go next.
“Once you’ve got a point where you had to mentally train to keep going, you can keep going, and the distance is just a number.”
Now Simon was taking this running to a whole new level. He ran the New York marathon, even starting at Runkeeper's Boston HQ as a way of a 'thank you' to the company for providing their technology. All in, he covered an incredible 260 miles in nine days, picking up running partners along the way (thanks to social media).
If that wasn't impressive enough, he ran solo for the race, leveraging a Google Glass wearable device and IBM technology to direct him around the course with simple audio beeps indicating whether he should take a left or right turn.
This is where Simon's passion for running interweaves with his professional career in technology. Speaking to me, he says he's hopeful one day of using technology to react to the environment around him in real-time, potentially responding to new obstacles appearing and alerting him via some kind of wearable garment. This future, he says, is not so far away.
The challenge of New York, he says, was the unpredictability. "The hardest thing was just the damage I was sustaining. I cannot see the small imperfections on a road so I end up taking a lot of damage to my knees and ankles. That uses a lot of energy. But it all comes down to the comments above -- when the going was tough, take a mental or physical break for a bit, and then get back on it."
But arguably his biggest challenge came at the four peaks mountain challenge in Africa, a 160 mile race in the Namibian desert, in May 2016.
The first blind runner to attempt the race, he once again competed solo. Unfortunately, carrying a leg injury prior to the event, his injury worsened to the point where he had to retire hurt. After tearing all the tissues in his leg, it was almost four months before he regained any lateral movement.
“That didn’t end the way I wanted it to, but sometimes you get injured and there's nothing you can do about it.”
He says that the distance and the never-changing horizon of the desert can break you.
“The desert is awful from a centre of depravation perspective. The only thing that keeps you going is looking around – but there’s nothing…no sound…no smell. Obviously, I can’t see anything anyway...
“Honestly, there’s not much to say about the desert, it’s nothing -- even if you can see."
Interestingly, he recalls speaking to the race director, who specifically designed the course with a 10-mile stretch where the horizon doesn't change at all. This would 'break' most runners, as there's nothing visually to keep them going, but Simon notes that's how he runs on a daily basis.
His long-distance solo races are over now, especially after a recent training incident which “really went wrong”.
“I went out training on my usual memorised route. There was a burnout car in the road and I ran into it. A part of the car went into my shin, into my knee, and sliced up my right arm. I took a reasonable amount of damage.
“It was then time to rethink as I’ve got two kids. I thought 'I’ve proved this was possible, now I am walking a bit of a fine line too much'. It was then that I decided to switch to triathlon with the idea to train for performance.
“It was always going to go wrong at some point – the difficulty was that it happened a few miles from my house, so my wife and kids saw me covered in blood. It’s not something you really want to expose your kids to – so it was time to not do it so much."
On our call, I am struck by just how much Simon packs into his life. He’s working full-time, running most evenings and looking after his kids. Even during our chat, he’s on the move, jumping in the car to a speaking engagement. Maybe he is not slowing down as much as first thought.
So, would he recommend others do the same, those with little to no vision to undergo the same journey?
“Some people contact me about training solo and my first bit of advice is 'this is going to be the riskiest thing you’ve ever done, so get comfortable first, and then let’s see if you can go out and do it'. I try to talk them out of it, but if they still want to do it, I tell them how to go out and do it.
As we finish up the interview, Simon offers some brilliant life advice for those struggling to find a way forward, to power through adversity like he has.
"It is far too easy to concentrate on the now. So, when things get tough it is easy to be overwhelmed with challenges that seem impossible to achieve. It can often be valuable to realise that the difficult moments will pass and to concentrate on a not-too-distant goal - something easily achievable that you can do now to improve the situation.
"This may be as simple as taking a step back and doing something else for 20 minutes. Or even thinking 'right, what is the first step to change this situation'. Think of the future and how to get there."
Simon is an inspiration, a man changing perceptions and breaking down supposed limitations imposed by society.
And not only does he prove any doubters wrong, he is also evidence that life is very much what you make of it.