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My blindness – and the curious tension with privacy

Cropredy stage 1

By Simon Davies

When I was a young boy, there was a kid in my class whose visual impairment was so bad that he had to sit front and centre of the classroom, using binoculars just to see the blackboard.

To many classmates this was a hilarious spectacle, though there were always one or two sensitive souls who silently felt the boy’s tragedy. On bad days, in poor light, he’d be forced to move his desk even closer to the board, noisily breaking the neat symmetry of the room, still using the binoculars but often unable to see what was written there.

I think I’m saying all this after so many years because a disability of any kind can be the most deeply private and yet most publicly obvious part of a person.

To some in the school, the boy’s blindness was an irritant. To the sports crowd he was an embarrassment. The boy was an unwelcome mutant who everyone else had to make concessions for. Fully sighted students mumbled that he should be sent off to some special school; just a bonk-eyed weirdo.

The boy had not a shred of privacy. When he wasn’t being poked and prodded by specialists, or scrutinised by some official or other, he was being interrogated on trains and buses by well-meaning members of the public, curious about why he was reading large-print books at three inches distance with a magnifying glass. His disability was as much a public spectacle as it was a deeply troubling reminder that modern healthcare can’t always rebuild a broken child.

That boy, if you haven’t already guessed, is me.

Over decades as an extremely vocal public commentator and activist, the one personal topic I’ve never publicly discussed is my blindness. Well, my near blindness.

I was born with the condition, but I still can’t say with accuracy just how blind I am – 7 in 200 or something like that. I guess that comes out at three or four percent visual acuity. Enough to make certain I never get behind the wheel of a car, or even a tractor; enough to perceive shape, but not texture. And – most annoying of all – poor enough to never see the twinkle in an eye – or even the colour of an eye.

I think I’m saying all this after so many years because a disability of any kind can be the most deeply private and yet most publicly obvious part of a person.

There’s another reason too. Just in the past week at various meetings, half a dozen people asked what caused me to become a rights activist. In previous years I recounted my campaigns as a fourteen year-old against repressive and intrusive rules imposed by my school, but I got to thinking that the roots must be far deeper than that. I suspect the blindness is at fault; so here’s some tedious biographical detail for context.

Simon Davies demonstrates how to read phone messages with style and grace! Note that with some phones, two magnifying glasses are required

Simon Davies demonstrates how to read phone messages with style and grace! Note that with some phones, two magnifying glasses are required

My parents and I were in agreement that ‘normal’ schooling was the right choice for me, difficult as it was. But the most distressing element of the eye condition wasn’t actually within the classroom; it was the constant attention that it provoked in public. I hated that.

“Have you seen an eye specialist?” “Have you thought about wearing glasses?” Or, more commonly, “Medical science has come a long way; maybe my friend can help you – he’s a specialist.” People mean well, I know.

Like many others with similar conditions, I vowed to “normalise” myself. Damned if I was going to be singled out for scrutiny any more. Social situations (and people in general) still terrified me because of the eye condition, but the arrogance of youth knows no limits.

I had a couple of small normalisation victories before the ceiling came crashing down. For example, as a boy, I had developed a stoop so pronounced that the doctors thought I had thoratic scoliosis (which I believe is some kind of spinal curvature).  The reality was I needed to see the ground under my feet, so my head was always bent low. After a couple of years walking like a Thunderbirds puppet, I straightened my back and developed a sixth sense about the surfaces I walked on. Phase one complete!

To be precise, the solution was developing a constant evaluation of light variance against terrain analysis rather than a sixth sense, but it has rarely let me down. The rear exit stairs at Copenhagen railway station are an exception; they freeze me every time.

Visually impaired people who try to appear normal often develop bat-like radar and an almost mathematical precision about context and distance. It takes a lot of patience and practice. In the end I could pour a cup of tea just like anyone else – and without the former requirement of burning my nose on the tea pot!

The activist and the Home Secretary: Simon Davies and David Blunkett discussing when the blind were misleading the blind

The activist and the Home Secretary: Simon Davies and David Blunkett discussing when the blind were misleading the blind

One problem with being nearly blind and not wanting to admit your disability, is spending the first three or four decades of your life simply appearing a bit odd – or rude. You can normalise your behaviour as much as you like, but in the end if you can’t see a colleague waving at you from ten feet away you just come across as an ignorant swine. And if you can’t look a person in the eye, you’re just shifty.

Three years ago I sat down with one of my long-time arch-enemies, former British Home Secretary David Blunkett. We’d spent the better part of five years slagging each other off; him in parliament and in his diaries, and me in the media. We then decided we should converse as two human beings.

Blunkett is stone blind, and has been all his life. I always admired his tenacity. What surprised me in our conversation was that he nailed the near-blindness syndrome perfectly: “People know what I am, and they can deal with it, but how do they deal with you?”

Indeed. How do some of them deal with people like me? Eyes play such a crucial part in human relationships and communications. You can’t gaze into my eyes like they do in Hollywood movies, or you’ll end up either deeply distressed or in hysterics. And as for cultures that require eye contact, I can get into a big mess. Thank god for sunglasses!

It’s no myth that near blind people learn to recognise people from a distance through shape and gait, but that doesn’t always help close-up. I still wake up cringing over an incident at a conference involving Anne Toth, then global privacy chief for Yahoo!

I had been in conversation for a while with a conference participant during which I talked at length about Anne Toth, before being reminded by her that I was, in fact, speaking to Anne Toth.This, despite having known Anne for years and being one-foot distant. Needless to say, conference name tags are no help whatever. Conference organisers take note.

At the podium, addressing a joint meeting of EU parliaments in Brussels and trying to stay focused on more than just content.

At the podium, addressing a joint meeting of EU parliaments in Brussels and trying to stay focused on more than just content.

For a while I tried to solve this problem by bringing an assistant to conferences and meetings, like Miranda Priestly in The Devil Wears Prada. That wasn’t a sustainable option though, mainly because people can have filthy imaginations, and “assistant” becomes a euphemism for something far more sensational.

Public performances can be a challenge for any near blind person. I can easily MC a music event with thousands of people in the audience, but putting on a confident “normal” appearance requires a lengthy and detailed analysis of the stage to identify where every cable and monitor is located before I even set foot on the stage.

Taking questions from a podium is an even greater challenge when you can’t see who’s asking the question. And don’t get me started on those ‘down the barrel’ television interviews where you have to look head-on at a remote camera. Those situations are the stuff of nightmares for people like me.

Technology has, of course, been a huge help. I can write in 32 font, though using that size in any public place is anything but private. Text to voice software is clunky but useful. And thank god some handset manufacturers and operating systems still enable giant font.

All of which is a way to finally admit that I’m a visually dysfunctional guy who’s tired of being in the disability closet. So, if you see me pouring tea over my instant coffee at some conference, make sure I see you giggle about it.