Two young men are in my way. Their laughter echoes off the houses opposite as I move quickly to skirt around them on the narrow pavement. As I pass, they fall silent. I am a few inches away now, my white cane skimming the uneven paving stones, when one of them shouts to the other. His voice is confused, angry. He is shouting: “She’s not blind.”
You can’t be a bit dead. It’s a binary thing. You either are or you aren’t – same goes for pregnancy. But what about blindness? Can you be a bit blind? Is that allowed? And how does that work? What does it look like?
It looks like a woman seeing two men in front of her and using her cane to navigate around them. It looks like a man folding up his cane outside the cinema and going in to enjoy a movie. It looks like a girl on a train reading a newspaper while her guide dog rests his chin on her lap.
I have a genetic eye condition called retinitis pigmentosa (RP). One in 3,000 of us have it. People with RP begin losing their night vision and peripheral vision any time from infancy to their early 20s and, in many cases, lose their central vision entirely in later life. Many of us struggle in bright light as well as low light. Many of us wear sunglasses in the rain. But what most of us contend with for a good few decades is tunnel vision.
Imagine looking through a fogged-up window with a tiny dot of clarity in the middle. Now imagine the dot as a cursor on a screen. I can move my eyeballs around to get a sense of the big picture. This is why I am able to see a train arrive at the platform, walk to the doors and get in without needing help. I can also find a seat, get out my Kindle and read this summer’s bestseller.
But there are a multitude of situations where my scanning technique isn’t up to the job. Playgrounds, revolving doors, pavements – most outdoor places, really. So I can enjoy lunch in a cafe. I can get the bill and type in my PIN. All this will be fine until I get up, walk into a chair and fail to locate the exit. Once I have found the door, I will probably have to scrabble around to find the handle. I will be that person, hesitant and slow, standing on the pavement outside until my eyes adjust to the sun. I will get in your way. I will hover at the top of the stairs gripping the railing. I will apologise constantly, even though I won’t have actually seen what I have done wrong. I will crash into you as you queue up at the turnstiles at the tube station. When I get home, I will cry from nothing more than sheer physical exhaustion. My head will ache. My neck will ache. I will check my new array of flowering bruises and will decide to cancel all further social engagements because it has just been too bloody hard. But when I am reading my Kindle on the train, I look normal. I feel normal.
Lately, as my central vision has begun to worsen, my scanning technique has become less effective. My eyes do not clasp on to those crucial details – facial features, for example – with the ninja-like speed they used to. I am missing more. The misty mazes around me feel thicker and more befuddling. So, last year, I decided to abandon the art of being sighted. It was a decision made with surprising ease. I called social services and was put through to a man called Andy who offered me mobility training and the gift of a shining white cane.
When I say I made the decision “with surprising ease”, I mean that it was with tooth-gnashing resistance. I waited for Andy’s first visit with the enthusiasm of a condemned woman. The surprising ease came later. Andy showed me three different canes. The symbol cane looks like a conductor’s baton. It doesn’t reach the ground. It is there merely for show – to let other people know you cannot see very well. I had never heard of a symbol cane before. Andy showed me two other canes that touch the ground, thereby giving the user “feedback”. We decided I needed feedback. My heart was thumping as we left the house together with my new cane. I felt sick with misplaced, wrongheaded and overwhelming shame.
And yet, a few days later, I was swanning through Canary Wharf shopping centre, my cane sweeping the shining floor in front of me, my daughter skipping alongside. I wanted to dance and shout. My eyes didn’t ache. My back was straight. My stomach was unclenched. I felt amazing. I felt free. I felt as though I had got my sight back. I realised so much on that day – what it felt like to be in the world and not feel stressed; why my friends and family are never as exhausted as I am all the time; how mad and wrong I had been to expect myself to be able to keep up with everyone else; that I had to forgive myself for not being able to keep up.
And, as I glided around, my daughter and I chatted about the window displays. With the cane, I could free my eyes to admire my surroundings. And people kept apologising to me. All the time.
And then it happened. That pang, that familiar summoning of resilience, that surprise arrow of shame. I neared a doorway and stopped, because I saw a man approaching and I decided to wait for him to open the door rather than open it myself. I did this because, in that split second, I felt compelled to “play blind”. In that split second, I felt like a fraud.
“Who cares what people think?” It’s always angry, that statement. I have had it said to me a lot recently. I have also seen the expression of genuine incomprehension from Andy. “The cane is here for you,” he said, exasperated. “You are not a fraud. You are exactly who it’s here for.”
We all feel the need sometimes to explain ourselves to strangers. We all want to present a coherent picture, to make sense. Psychotherapist and cane-user Rachael Stevens has RP. She spoke about it on BBC Radio 4’s Today programme and was flooded with positive responses from visually impaired listeners. One caller spoke of a nasty encounter in which he was accused of being a “benefits fraud”. Stevens herself once told me about a time she had been confronted outside her son’s nursery by a man who had planted himself directly in front of her, smirking, as if to test her.
In order for guide canes and symbol canes to be effective, they need to be understood. Somehow, some time ago, the people who came up with these valuable low-vision solutions only did half the job. They didn’t put the resources needed into raising public awareness and, as a result, the cane has become symbolically too blunt an instrument.
I took the decision that I had to find the best way I could to present myself as partially sighted. I had to be me in the world. I unfold my cane whenever I need it. When people move out of my way, I thank them. I use different canes for different situations. I don’t use a cane when I am with my toddler as I have not yet found a way to hold a cane and push a buggy simultaneously. Also, I have found that the buggy itself (as well as the yelps from my son) provide adequate feedback. Some days, the light conditions are just right and I can operate without a cane. Other days, I stand at the front door and can’t take two steps forward.
I talk to people about my condition as much as possible. “Are you allowed a guide dog?” asks a friend. Good question. Yes. Jessica Luke, an RP friend with a guide dog, came with me to give a talk to my daughter’s class at school. We put up slides showing the different ways people see. We got one teacher to wear RP-simulation specs and we threw her a ball. She dropped it and the kids screamed with laughter.
The Royal National Institute for Blind People (RNIB) website tells me that 93% of people who are registered blind or partially sighted in the UK retain some useful vision. So why isn’t there better understanding of visual impairment? Is it because it is easier for sight-loss charities to raise money if they present a more simplistic, pitiable image of blindness? Or is it because it is thought too complex an issue to explain? Dyslexia is a complex condition, but nowadays a child with dyslexia can grow up in a world that (largely) understands their needs. I believe passionately that the same must be done for partial sight.
Blindness is not binary. It is a rich and fascinating spectrum. Visually impaired people come in many different variations. Some of us have central vision but no periphery. Some have periphery but no central. Some see the world through a window stained with blobs. For others, it is all a blur. We could form a zombie army. But we will probably just quietly get in your way on staircases.
And, given the chance, many lovely people do understand – such as the man who saw me holding my cane, squinting up at a noticeboard at St Pancras station. As I sat down next to him, taking my Kindle from my bag, he leaned over: “Did you get all the information you needed from that board?” I replied that I wasn’t 100% sure but I thought the Sevenoaks train was arriving in 10 minutes. He got up, checked the board and confirmed I was right. “Well done,” he said. “Thank you,” I replied, and we both got on with reading our books.
To find out more about the RNIB’s #howisee campaign, visit: rnib.org.uk/howisee
To find out more about RP, visit rpfightingblindness.org.uk
