Pets for partials is doing the rounds as a moan about guide dogs being too much given to people who are partially sighted, not totally blind. I have a guide dog and a little sight too. Perhaps all this is the tip of the iceberg of a highly sensitive visual disability issues. i.e. is it right to lump us altogether as vision impaired to facilitate the magical two million sight loss population?
After all, only ten percent of those with significant sight loss have no vision at all and their lives are very different from the lives of those of us with diminished sight.
The issue is this: Should resources be more focused on the totally blind or should we continue on the roll towards larger numbers of people with sight loss? Professor Ian Bruce at RNIB lead the charge for the two million in the late 1980’s and the aging population statistics point ever upwards over the next ten or twenty years.
I don’t look back through rose-tinted glasses but the second world war opened up opportunities of rehabilitation, work and government financial support for the totally blind. So I wonder if we should be refocusing on the latter and their specific needs once again. I am old enough to remember the lovely quiet grounds in Sevenoaks, Birmingham and Torquay where newly totally blind people could hope to relax and move around with appropriate help, encouragement and blossoming confidence. These very places now are given over to posh flats for the seeing with money and totally blind newbies have to sort it all out in the hustle and bustle of our cities and towns often, sadly, without a supporting peer-group.
Perhaps we should replace the pets for partials with time for totals.
Guess I had a fragile start. My parents were married in 1934. Around Christmas 1935, they went up to Blackpool where twins were borne but died within 24 hours. Dad had to return to Wolverhampton leaving Mum to bear the burden or lose his job at a time of mass-unemployment.
In January 1937 my elder brother was born, a nearly blind baby. My parents, I am told, were advised professionally to go home, get over it and have another baby. In 1940, that was me but I came very early and was pretty weak and, so they thought, very blind. Apparently, I did not start motoring for a couple of months and they say it was vessels milk that fuelled me up. So off I went into life’s adventures and all the time bombs were dropping and anything like normal life was a memory or, in my case, an unknown I was hard to feed and not moving through the normal infancy milestones. My movements and hand control were those of a spastic, Mother told me. These days she would have used the word Cerebral Palsy correctly, of course.
No wonder I have lived for 80 years as a glass half full, give it a go, strong-minded kind of man. I was forever equipped to struggle and survive. But if ever there was a choice between the easy and the hard way ahead, guess I tend to choose the hard way.
The following is my best memory of how it was for me as a blind infant:
This story starts in bed. You have to imagine me lying curled up at night time with the sheets tight about my neck and my left finger pressed into my left eye.
By pressing and moving this finger, I could bring to life colours and shapes like a kind of fireworks display. Oranges and reds and all movable at my finger’s command. I could also switch off the fireworks by pressing hard until all went black. Scary but the fireworks soon came back after a few seconds.
When the light was on in my bedroom, I could lie back and make the light dance by moving my head from side to side and that’s about all I could see in the room so it was worth making the effort to affect a fireworks display or a dancing light. Obviously, being a baby, I was just amusing myself and there was no realisation that I was odd or even in danger of damaging a precious eye. The behaviour was rewarding and must have soon become a private habit which lingered beyond babyhood.
Jump forward a couple of years and my world is very different. §Still almost nothing to see but my head is filled with a huge array of colours, sparks and patterns. Every word, every name, every idea…they all seem to have their individual colour and each colour pops into my head on queue. Mum is dark brown and Dad is red with a tinge of orange. Bob is brown but lighter and slightly reddish. Monday is dark gold while Sunday is bright and shining gold. Friday is pink and Saturday black and silver. Love is grey with a hint of blue and I, Roger, am cream. Even numbers have their colour and I have no idea that all this might be unusual. It was as if my busy visual brain parts were making hay differently with the absence of useful eye input.
I can’t remember not having a map of my home in my head and it’s still there today nearly 80 years on. I can conjure up the creek on the third step; the precise position of the table near the window in the back room and the fender round the fire. I did not need to see them to avoid danger. I recall going down to the air raid shelter in the garden, two steps down, the smell of damp and the biscuit tin right ready for my hand to find.
There was a routine to our morning awakenings. The smell of fried bacon downstairs and the pitter-patter of our Judy dog coming up to see the three of us. It was dark but we had torches and used to shine them on the ceiling making frightening shapes with our hands. We and our parents knew even then how to stimulate weak vision in young children.Without such or similar stimulation, there is a visual price to pay throughout life and this knowledge was invaluable to me later when I worked as an Education Adviser with sight loss children and their families.
I had 30 small eye operations in the Wolverhampton Eye Infirmary before my 17th birthday. We used to joke it was my second home! On the occasion I am thinking of, I must have been around four years old but already I knew the routine well. No breakfast, eye lashes cut, A yellow medical-smelling stuff pasted around the eye, Atropine eye drops making me very thirsty and a very nervous tummy. I learned the art of quiet resignation and focused my mind ahead to waking up safe in bed and having a warm drink. But, on this occasion, things went badly wrong. I woke up in a wet bed, my wet. It was worse: As I shuffled my legs and feet about, the top sheet ripped and I was utterly obsessed with the conviction that it was all my fault. My fault that the drugs had taken away my bladder control and my fault that I had damaged hospital property! In fact, all my fault I was such a bloody nuisance. I worried about it for weeks afterwards. Crazy, I know and I have no memory, of course, of any one being cross with me or blaming me.
Generally, my hospital experience was fine, a tribute to my parents ability to explain things and give that reassurance and love which enables a young child to come through such traumas with confidence. A much happier hospital memory is of me and elder brother Dave driving around the hospital garden in our peddle cars the night before our operations were due. I felt like I was out on the main road in charge of a real car and the mask and the smell of chloroform were for a little time forgotten. .
Sister Burne was in charge of the Children’s ward at Wolverhampton Eye Infirmary for several years, always as I thought at the time. She was there for me as I lay on the operating table. I learned to relax and trust. As the mask was placed over my face and I was seeing multi-coloured sparks and counting down from ten to zero, she always held my left hand and gave that magic squeeze signalling that all is actually well. It’s never too late to thank her on behalf of myself and the other children she took care of.
As a tiny child, I was sometimes angry and sometimes very content. I hated having to chew and swallow things such as meat or tablets. That choking heaving feeling welling up from the stomach and involving the throat is horrible and when you are held down and force-fed for your good, well you just have to kick and fight, scream and cry. Worried parents know you need meat and certainly that you must take the tablets professionally prescribed by the doctor who knows far more about stuff than we do. But my hatred of chewing fatty meat lasted well into my teens and I probably won more battles than I lost. I did enjoy well-cooked liver, corn beef and sausages, though because they required no chewing. I had lots of colds and ear infections so my determination must have cause Mum and Ad considerable emotional grief.
On other occasions, I was lying on the floor often near a door, on my back and kicking and screaming like the best of them. It just seemed to come upon me and I have absolutely no recollection of the cause of this anger and frustration. When an attack had subsided, they still seemed to love me and all went back to the peace and quiet of normality.,
I also carry memories of contentment and delight. Before bed, I just loved lying on the carpet by the fire with my beloved Judy dog. She was warm and we were so close and cosy together night after night. Sometimes, the smell of her singeing fir aroused us to a realisation that the bliss had run its course again. Thinking about it, I haven’t really grown up because even now late in the evening, I lie on the carpet with my lovely guide dog Quigley and relive that private close man with dog relationship before turning in.
So I am now four years old, or there abouts and people, particularly my mum, are beginning to teach me to understand letters and numbers and there are huge confusions in this little head. Letters , such as capital R for Roger, were distinct shapes drawn with a dark thick crayon on white paper so I might just see it. Letters were also arranged pegs in little holes on a wooden block. R, for instance, had four pins; three in a row on the left and one in the middle on the right. OK so what about my letters, the letters that flooded my daily thought patterns? R was cream, C was a much lighter cream and J was a very light pink and so it went on. I had no idea that my internalised letters were going nowhere in my development which was a pity because they were the most meaningful to me at that time. The carefully drawn shapes on paper were probably what family and educators were hoping would prove to be my salvation. But, in the event, it was those odd dot formations, braille, that proved to be the way ahead in my life. Well, at least for the first forty years or so until the advent of computers and synthetic speech. Braille still plays its part in our home in the way we keep our diary, mark foods and important papers but we now mainly listen to read and write on the standard QWERTY keyboard computer in the normal way. It’s just that we hear what we type and what is on the screen rather than looking at the screen for words of wisdom.
Into my confused mental state were being injected words like school, going away, teacher, learning, and people came to our house to talk hush hush while we were popped into another room to play. It never crossed my mind that others were about to disrupt my little world in a small house in Blakeley Avenue Wolverhampton. And it would be several years before I even began to take on board the fact that I was a special needs child, a disabled child, a handicapped child – different..
I found myself in a classroom, seated at the front with my nose almost touching a blackboard. A tall teacher was by me and my parents were very nearby. Every so often the teacher blurted out ‘That’s backwards’ as I got the circles on the wrong side of the sticks with my chalk. Strange really, because I thought I knew my b’s and d’s but obviously not when asked to perform, as it were, for both teacher and parents. I think that was my last day at this local school. I can’t remember much detail but it was not a happy place for me to be. I had no idea what was going on most of the time and often had no idea what the teacher was talking about way out there in front. The last straw had been when someone tipped me backwards out of my chair and I cracked my head on the ground.
The morning and evening journeys from home to school were pretty good, though. Whatever the weather we made two bus journeys accompanied by a lovely lady called Mrs Clay. She always had goodies for the journeys: Sweets, occasionally dark chocolate my favourite, and sometimes a sandwich. It was always cold and often foggy, very foggy and on a few occasions things were so bad that the bus failed to come and we had to walk. Mrs Clay was in a state on those occasions but elder brother Dave came to the rescue. He knew the way even when Mrs Clay could scarcely see ahead.
Apart from seeing so little of what went on in the classroom, I was frustrated by the fact that, whoever was trying to show me something, whether letters, drawing or taking a look/feel at something new, the demonstrator always stood in front of me and I wanted them behind me. Their hands guiding my hands, their right on my right and us both to be able to focus on the object. That’s what happened at home and I had not the language, understanding or the confidence to make it happen at school. But when in later life I was a teacher of blind children and an adviser of others, ‘put yourself Behind the blind child in the teaching situation when practicable’ was my advice but I am not sure it was understood or heeded.
A little later, when I was learning braille in a special school, the backwards thing came to haunt me again. We had to write our braille letters with a dotter, bodging holes in the paper using a guide frame. Obviously, to feel the dots we had created, the paper had to be turned over. i.e. we had to bodge backwards to make the thing work. I used to lie in bed at night thinking about these complicated matters mentally rehearsing how I had to mentally reverse my braille writing. Even today I find myself 180 degrees off the mark when thinking about a journey in my head.
I used to ride around the pavements on my little green three-wheeler bike for what seemed hours. I knew where I was and could see the colour of each house gate on my side of the road. Traffic was light in those days and we had learned to listen more than look when crossing our fairly safe roads. So one day, I was nearly home coming up to the first black gate in our avenue. The next second, I was on my back. Above me was a dark metal mass smelling of very warm oil. I lay dazed, not in pain and not at all frightened. Somehow I switched off and have no memory of the things that must have happened next. As far as I was concerned, I was then in our bathroom at home being washed down and tidied up. My knees were bleeding but I felt OK. It turned out that the chap who owned the local newsagent had backed out on to me and my precious bike was in two pieces while I remained one complete undamaged child.
IN a matter of days, the bike had been put together again and Humpty Dumpty was able to resume the role of king of the road, or at least of the pavement. I can only imagine that Mum was at the window or out of sight nearby consumed with sheer worry; but what fantastic parenting!!! Less courageous people would have allowed such an accident to become a barrier to the goal of independent living for their at-risk offspring. I think I have inherited that ability to take risks while learning from experiences. As a result, some of my mistakes have been costly but better to have risked and grown than never to have grown at all.
It was all so noisy, far louder than the old school playground. There was nobody I knew and no quiet corner to get to know someone. I stood gazing at eh huge window through a watery eye and a sinking helpless feeling that seemed to totally take me over as I thought over the events of the last day. The long bus journeys, three of them. The yellow and green bus into Wolverhampton as usual; . Then a red bus into Birmingham which took forever; Finally after getting lost, another red bus over the Lickey Hills and a long walk up a drive surrounded by huge bushes. Then she was gone. My Mum was gone; the very one that was always there.
If ever you want to disarm a five year old child, this is what to do. As Mum disappears, frog-march the child off to a large room, undress the child, bath it taking great care to scrub its head with some medical-smelling muck and kit it out with hard unfriendly clothes that stink of …that’s it something unhomely. If you want to give the child something to think about and lots of thinking time, the next trick is to bugger off and leave him or her alone. I don’t’ think it much matters what you say to the child because it’s a waste of breath. Kind intonation might help but probably not.
After tea in a noisy dining room, It was soon bedtime. Again there was that unhomely smell of bedding, no familiar soft toys but worst of all was the crying of the other new children. I ached for the familiar night-night ceremonies of home, for the nightly chatter with my brothers and the familiar noises and voices downstairs. Another child got slapped for making too much noise so I huddled right down in bed and so began the shutdown of my emotions which was to last for many months. My loving parents had taken good advice and handed my care over to the professionals.
Between early September and the Christmas holidays, I saw my parents just once for about two hours on a Saturday afternoon in that same noisy play room amongst all the others and one of my new friends had no visitors so he joined the Hinds family gathering. More about our school life later but as Christmas drew near we would chants together: ‘Six more days and we will be, out of the house of misery’.
If I had not been given the opportunity of special education, small classes, teachers and care staff trained and experienced to take a long view of the needs of blind and low vision children, my life would have been very much the poorer even though I must have suffered some short and long-term emotional damage, including a huge knock to my self-image and self-worth. If a body of professionals had not put their heads together, had a vision for us and made it all happen by raising funds, building buildings, creating educational and social care curricula for us, I and others would have remained self-centred no-hopers in our homes. The junior school on the Lickey Hills I attended no longer exists like so many such schools but the New College in Worcester still blazes the way as the shining light for higher education and opportunity for young people with significant sight loss. The medics have done such a great job that numbers of able blind children are small and much of twenty-first sight loss is related to more general damaged children, presenting a whole new challenge to professionals and society.
So I got used to the ways of a boarding school, the revolting food, the comradeship, the lessons, the lack of privacy, and the yearning for home. I learned to fit in, keep quiet, do what I was told to do mostly, and to please staff by working to my best ability. In particular, I made sure I was never one of those boys bent over with trousers down in front of the whole school as the star of the Thursday afternoon beating ceremony. My obedience, however, did have one limitation. I could not bring myself to eat grisly fatty meat and I spent many days up in bed as my punishment. Great to beat the system and I have a happy memory of a new school nurse bringing me a bit of chocolate unknown to the prison warders.
Lucky not be have been caught but so exciting for a small boy: Risk, danger, fear and food.