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THE PEOPLE WHO WALK IN DARKNESS

The people who walk in darkness

Interviews,Photographs Mary Dunkin
Saturday 21 October 1995 23:02 BST
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IN THEORY, the burden of blindness has never been lighter to bear than it is today. For most of human history, blind people have had to survive without braille (developed in the 19th century), without guide dogs (pioneered in the 1930s), without disability benefits. Today, by contrast, there are highly-trained guide dogs by the thousand, services and products for the blind by the hundred, and a growing number of planners, politicians and business people who recognise the needs of the visually impaired. The Disability Discrimination Bill, which receives its third reading in the House of Lords this week should, when it finally becomes law, give blind people unprecedentedly strong guarantees of access to buildings, goods, jobs, services and information.

But anyone who imagines that life is easy for the 1.7 million people in Britain suffer from some form of severely impaired vision would be wrong. A survey published by the Royal National Institute for the Blind last month found that living with blindness in the 1990s can still be a desperately frustrating business.

The problems most frequently complained of included loneliness (roughly a third of blind people live alone), lack of understanding from the rest of society (cited by 68 per cent of those polled), difficulty using public transport, the impossibility of ordinary reading and - as a by-product of this - lack of access to all kinds of information that fully sighted people take for granted. The news that, since the introduction of the National Lottery, casual donations to the RNIB have fallen by a third merely emphasises that being blind is, at best, an uphill struggle. The interviews on these pages may serve as a reminder both of the range of difficulties experienced by blind people, and of the rich variety of lives that fully-sighted people all too often fail to see behind the label "blind". One respondent in the RNIB's survey spoke for many blind people when she commented: "I hate the way sighted people think you are mentally deficient."

The interviews also give a sense of the strength of the extraordinary bond that can grow up between the blind person and his or her guide dog. It is hard to believe that, when Muriel Crooke pioneered the training of guide dogs in 1930, her trainers were abused by protesters who considered their work silly, useless and cruel. Sixty-five years later, the Guide Dogs for the Blind Association remains one of Britain's most popular charities, and there are over 4,000 dogs currently working. Any visually impaired person is eligible for a guide dog, which will cost the owner a one-off payment of 50p. (Food and veterinary bills are met by the GDBA.) The main reason why there are not more is that not all blind people want the responsibility of looking after a big, energetic dog: 90 per cent of visually impaired people are over 60.

Musgrave Frankland, one of the first four people to be trained with a dog in Britain, wrote that a guide dog is almost equal to giving a blind man sight itself. Not all guide dog users would go so far, but most would agree that the partnership of guide dog and owner provides considerable freedom and independence for the latter; and an enviable degree of companionship for both.

DONNA SALMON: I have congenital glaucoma - yet there is no known family history of it, so when I was born, they weren't looking out for it. I was about three months old when it was diagnosed, and my right eye grew steadily worse, until I had to have it removed when I was 15, three years ago. You have a temporary false eye fitted and I had to go into a room with trays of false eyes - it was quite spooky. Eventually, I had my own eye specially made which matches the colour of my other eye. With my left eye, I can read letters that are half an inch tall - but I couldn't read the number on a bus, even if I was standing next to it. My Mum paints my nails and I put on my own lipstick, but I always get her to check it. A blind friend gave me a tip for putting on make-up. She said to put it on with my fingers, and not with an applicator, so you can feel your features.

The earliest you can apply to the Guide Dogs for the Blind Association for a dog is when you're 16, so that's when I did. They come to assess what kind of dog you require, to suit your life and your personality. Then an instructor brings a trained dog to meet you. I thought Patti was perfect. I just fell in love with her the moment I saw her. She's got a lively personality quite like mine, and she wasn't too big to handle.

A month later, I went on a three-week residential course to learn how to work with her. For the first few days, you learn the routes round the building, following rails with your instructor. When you first go on the routes with the dog, she has the harness and handle on, but the instructor also has her on a lead so that you're not in sole control. The dog, of course, is highly trained, but you still have to learn how to command her. At the end of the course, my parents collected me in the car and took me home. The after-care is great, because an instructor goes on all your local routes with you.

Although I'm not set on going out to find someone to marry, it's something I do think about quite a lot. And I think about the problems we'd have if we were both visually impaired. For preference, I would definitely go for someone who had more sight than I have, but it's not something I'm really bothered about, because, as they say, love is blind...

DAVID MUSGROVE: I lost my left eye when I was playing Robin Hood when I was 11. My other eye started to deteriorate in sympathy, and by the age of 25, I was totally blind. I met my wife Shirley while parachuting with the Red Devils. I enjoy parachuting, but my real love is water-skiing. I ski with the British Disabled Water-Skiing Association, and have competed in every world championship since 1987. My other love is mountaineering. I've climbed Mera peak in the Himalaya: it was 22,000ft. There were 12 in the group - three blind and the rest able-bodied; each blind climber was led by an able-bodied climber who had a rope looped into his rucksack.

For years, I didn't want a dog, I didn't want the responsibility of an animal, so I struggled with a stick. But it's very tiring because you have to concentrate heavily on where you're going all the time. Before I had Pippa, my first dog, I had no energy at all. I started water-skiing the year I got her, when I was 37. I'm 53 now. After Pippa, I had Tadley and then Holly. Holly was a rascal and was easily distracted by pigeons and cats but now I've got Bonar - she's turning out to be the most beautiful dog you can imagine. We're an absolute team.

SHIRLEY MUSGROVE: I suffer from retinitis pigmentosa, which means I've got tunnel vision. I'm also short-sighted, so it's a bit like looking down the wrong end of a telescope. When I was six someone told my mother that they thought something was wrong - I was always bumping into things. But 40 years ago, there was nothing available; you just carried on.

My first dog was Fergus; Merlin is my second. The biggest difference the dog made to my life was that I could go out at night. I also seemed to get a lot more assistance from the public after I had a dog. Once I was waiting on the platform of a bus, and a bloke picked me up and plonked me on the pavement. I said, "Thank you very much," and just carried on.

When David and I decided we wanted a baby, we both had check-ups; so did my parents. There was no way we were going to have a visually-impaired child, not after the things I went through. But when Leslie was born, her eyesight was fine. When she was a baby, I had to be extra careful; I did everything on the floor, like changing her and dressing her. Now that she's nearly four, I don't force her to help me with things. We don't want her to feel she's here to look after us.

HILLARY LEECOCK: I was born premature and only weighed 2lbs, so I was put in an incubator and given too much oxygen too quickly, which affected my retinas and blinded me. There was a whole spate of premature babies in the early Fifties who were going blind, until they worked out why.

I am a masseuse, and Earl, my guide dog, is never in the room when I'm working at home, but he goes everywhere else with me. At the day centres where I work with disabled people, they love the dog and I think he's therapeutic for them. Earl's my third dog - he's nearly three and I've had him since he was 18 months. They match you carefully with the dog for temperament, speed of walking, lifestyle. I need one that will go everywhere with me - a lot of dogs won't go on the Underground, but Earl doesn't mind.

I was the youngest of four children; my parents were determined that I was going to grow up like the others. I went to a boarding-school for blind children, but attended a mainstream school on a daily basis. I did languages at university and then worked for the Leonard Cheshire Foundation, where I came into contact with physically disabled people. But I was bored working as a secretary; I wanted to do something which involved working more with people. I did a course in anatomy, physiology, massage and reflexology and, later, in aromatherapy. I now work with many physically disabled people at three day centres; the rest of the time I treat private clients at home.

Some people have the knack of knowing how to help a blind person, and some people don't. When you've got a guide dog, your life is a constant PR act - you have to explain carefully to people how to help. But you have to be nice to them, otherwise they won't help another blind person. When I go round Sainsbury's, an assistant comes with me - they try to hold you and then they walk very, very slowly. But what I need is to be able to take someone's arm so that I can follow them - there's nothing wrong with my legs. Sometimes, I've been told, you're waiting to cross the road and there'll be a car waiting for you to cross, flashing its lights! Another time, I was out without Earl and I had my long cane and this bloke picked up the end of the cane and led me across. I told him to take my arm, and he went off in a huff. You have to laugh.

JOHN WILSHER: I was born premature in 1951, and put in an oxygen tent, where the high concentration of oxygen blinded me. And that was that. From the age of four, I lived in residential establishments for visually impaired people, first a Sunshine Home in Northwood, then Dorton House School, and then when I was 17 I went to an assessment centre. There they would train you for work such as light engineering, light assembly or typing. I decided to train as a machine operator.

About this time, I was persuaded by a girlfriend to apply for a guide dog. We'd never had dogs at home. My mother didn't like them, but I did. My first dog was a black lab called Bess.

I decided to look into the possibility of piano tuning - without a dog I wouldn't even have dared think about it. So when I was 22, I started a two-year course at the London College of Furniture. Only five of the 18 students were blind, and they were not experienced at teaching blind people. However, I passed, and for the past 20 years I've been working nearly full-time. I spend three or four days a week tuning pianos in schools, and I tune a couple of pianos in private homes. Sometimes you have to ask instructions from the general public about how to get to a new place. They often say things like: "Go over there, and when you pass the church, cross over." In a strange place, that means nothing. It's always better if someone can come along with me.

I live at home with my mother, which works well as I'm familiar with the area. I read a lot, either through talking books or braille books from the National Library for the Blind, and I listen to the radio. I haven't missed an episode of The Archers since I was seven.

Duke is my fourth dog. You have to retrain with each new dog, but you soon become attuned to one another. For my kind of work, you need a dog that isn't going to be alarmed at having to go to a different place each day, and also one that likes travelling on buses. If they've been to a place and enjoyed it, they can remember the route up to two years after. Sometimes they mess around. One time, he walked straight by the school and took me to some fields where he wanted to be. They will try it on.

BRUCE JOHNSTON: I lost my sight in a road accident when I was a 23-year-old medical student. The most difficult thing for me to cope with was that I couldn't continue with what I had chosen to do. It was the biggest disappointment of my life, but there was no way round it, so I switched to studying psychology.

I have had guide dogs since 1965, when I was 24, and they've been an important part of my life, because they allow you to go through the world with ease and they bring a lot of enjoyment as well. It was particularly important at the beginning in offering independent mobility when I was living alone. My first dog was Cindy, then came Toni, Binley and now Pippa. Pippa is with me most of the time.

In 1990, I wrote The Skilful Mind of the Guide Dog. It was concerned with looking at the animal not as a well-conditioned robot but as an animal that could anticipate, predict, and jiggle around with possibilities in its head; an animal that could still reach its own goal even if it had to make decisions which took it on an alternative route. This was very exciting for me because it was also linking up with what was happening in human psychology, getting away from straight- forward behaviourism.

The guide dog probably epitomises more than any other the animal that has to apply thinking to its job. I wanted to discover how we could apply the understanding of the dog to training. I wanted to get away from the idea that it was an unthinking animal responding to stimulus and instead to explore the fact that it was a decision-maker.

It became apparent to me that the dog would never cope when crossing roads if it didn't have some way of being able to know what information to act on and what to disregard. I'm not suggesting that the dog can cross the road unaided, but the dog and the person can make a jolly good go of it.

Harnessing Thought, my latest book, is a continuation of this research. If we regard the animal as one capable of making decisions, it will affect the way we train dogs, and that's the work I'm doing at the Guide Dogs for the Blind Association. I'm an educationalist and not a dog trainer: what I'm trying to do is set a wider framework in which they can work. In that regard, we're having quite a lot of success. !

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