Why we made #HowISee - by author Harriet Lane

Post date: 
Friday, 19 August 2016
a close up of a woman with dark hair

Three years ago, when Joy from the council’s Rehabilitation team gave me a guide cane, I took it and thanked her, and later, when I was finally alone, I cried. Of course I cried. I have a white stick! I must be properly blind — even blinder than I thought!

Since then I’ve met a lot of people who are registered blind or partially sighted, and they all say the same thing: it’s a turning point, the moment when you hold your first cane, a moment of fear and despair: this is it, I’m not ready, the lights are really going out.

And this is a problem. But the problem isn’t with us; it’s with the general misunderstanding of the cane, of blindness and visual impairment itself.

When I started to lose my sight in 2008 — I have CRION, Chronic Relapsing Inflammatory Optic Neuritis, a rare autoimmune disorder affecting the optic nerve — I knew nothing about the subtleties of sight loss. As far as I was aware, a person out with a white stick or guide dog was functioning entirely without vision. I’d watch these people, crossing the road, going into shops, sitting on the bus, and I’d think: wow, I wonder how they manage.

Shamingly, it wasn’t until I was given my own white cane that I began to realise that blindness, far from being black and white, is in many cases a great swathe of grey. Of the people in the UK who are registered as blind or partially sighted, 93 per cent can see something. And that something is incredibly valuable. It’s really worth celebrating every scrap of it.

And yet the public’s limited understanding makes that aspect rather tricky. I’ve only really embraced the cane this year, because my 14-year-old daughter said, ‘Go on, why not see if it makes a difference?’ and encouraged me to use it as we walked through Soho on a Saturday night on the way to the cinema. It had a miraculous effect: people hopped modestly out of our way, cabbies braked to let us cross. Without the cane I would have been clinging to my daughter, trying to keep pace with the crowd, falling over kerbs and knocking into strangers. Instead, we were walking slowly, and talking, and I had time to look around, to see the lights and the people and the reflections in the puddles. All my usual anxieties evaporated.

But as we came into the cinema foyer, I felt suddenly uncomfortable – a bit of a fraud. Perhaps people were watching me folding up my cane and slipping it into my bag. Perhaps they were wondering what was going on. Why’s that blind lady going to the cinema?

Thinking beyond the cane

There are other problems with the cane. It’s ludicrously cumbersome. Unlike the long cane, which is used as a sweeping sensor, guide canes or signal canes have little practical value. They’re basically sending out a one-size-fits-all message: this person can’t see, cut them some slack. Because the sighted community doesn’t understand the difference between the canes (even the nice chap with VI in the RNIB shop struggled to tell the difference when showing me the range), the message is terrifically muddled.

Plus, I really can’t spare the hand. My hands are full – bags, tickets, wallets, spectacles, sunglasses, umbrellas, keys, shopping baskets, my son’s sticky fingers. (As long as I have children who want to hold my hand, I jolly well want to hold theirs, thank you very much.)

But the overriding problem is the clunkiness of the message. I want to use my cane to navigate Victoria Station with safety and confidence, and I then want to find my train and sit down and get out my Kindle. (I can’t recognise my own children across the street, but I can still read if the font is big and the light is right.)

At the moment, that switch from cane to reading matter is problematic; because I know it confuses the people around me. I worry it makes them think I am somehow ‘cheating’. Sometimes I modify my behaviour (keeping my Kindle in my bag, or not using the cane in certain circumstances) so I fit in better, so I don’t rock the boat. Man up, you may be thinking. Who cares what people think? But it’s tiring, endlessly managing other people’s expectations; and it feels wrong, too, not being true to myself in public. Lots of us feel this way.

"We knew the RNIB thought we were onto something"

I first tried to interest the RNIB in this issue over a year ago but couldn’t make contact with the right person. In the spring, in some frustration, I approached Radio 4’s In Touch who invited me on to talk about the shortcomings of the cane. After the show I was contacted by dozens of people with sight loss saying: snap!

Again and again, people talked about the awkwardness of experiencing the sighted community’s confusion — and sometimes its suspicion. Why wasn’t there better public understanding about the spectrum of visual impairment? After all, sighted people are endlessly and understandably curious about those with sight loss — just as I had been. Couldn’t we harness that curiosity somehow?

So I went on Twitter and started badgering the Chief Executive of RNIB, and this time I was invited to a meeting. I took my new ally Annalisa, who has RP. She played Good Cop to my Bad.

To be frank, our hopes were pretty low. Neither of us expected much, and it was immediately apparent that the RNIB has yet to be convinced about the need for an alternative product for people with VI, something less cumbersome than the symbol or guide cane. But the team was quick to accept our other argument: that we have to educate the sighted community about that 93 per cent. If the spectrum of VI was less of a mystery, we could get on and live our lives without having to endlessly manage other people’s expectations.

We knew the RNIB thought we were on to something, but we weren’t sure what they were going to do about it. Then they suggested a little film, and a social media push, and Annalisa and I had lots of ideas — oh yes, we had plenty of those — and the team listened, and kept listening, and they’ve created a film, which is very short and simple, and very clear. It does the job we hoped it would.

Now we just need to get the message out there.

(In case you were wondering about that alternative product, the Royal College of Art’s Helen Hamlyn Centre approached me after In Touch. Turns out they’ve been thinking about the need for a white-stick rethink for a while. And in the autumn, they’re setting 25 students from various disciplines loose on the problem, to see what they come up with. If you want to follow this particular angle, I’m on Twitter @HarrietLane_)

Harriet Lane’s novels ALYS, ALWAYS and HER are published by Weidenfeld & Nicolson. She will be appearing on Connect radio soon to talk more about her involvement with #HowISee and her hopes for the future, so make sure you tune in! 

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