Excerpt1
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.
Excerpt 2
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.
Excerpt 3
About the age of ten, I was sitting on a grass bank with Chris, maybe my first real girl-friend. We were quite alone in the world. I found my hand touching her right thigh and I almost but not quite innocently began to ruffle her skirt. I heard myself asking if she liked me but a familiar voice in front of us broke the spell saying: ‘I think it’s time to go back to the house’. It was the braille teacher who later was to be such a positive influence in my late junior learning life. This sight thing taunted me again as I reflected upon the incident many times with some fear, shame and certainly excitement. Yes, she was a girl and I a boy and we were not supposed to mix although we played openly together in the grounds on swings, bikes, and even the apparatus where we could hang upside-down and hope to see the girls’ knickers!!! Smile. Certainly, I was being awakened by a new pleasure- in parts of my own body, especially between the legs. I wondered what I might have discovered inside Chris’s clothes and why I should even want to know these things. There was the other side too. I wondered what it would be like if she fumbled into my clothes and how exciting this could be. I carried a conviction that it was all very wrong and dirty and did this mean that I was all wrong and dirty too? I wondered if the braille teacher had seen us, if he had reported us to other teachers, if they all knew and if they all thought I was dirty and wrong but it was never mentioned again. It was as if I got off physically but struggled mentally to avoid those muddled feelings of guilt and shame. It was becoming part of my being to shut off things because there was no one to share, no books or pictures, let alone TV or films, to help me understand how normal I was, and Chris too, of course.
Excerpt 4
I had fundamental difficulties with academic work, which linger with me even today. I cannot spell, my hearing is poor and I don’t see and visualise the pattern of words. Words for me are aural and oral, not easily memorable visual shapes.. This has led to several embarrassing moments. One of our regular headings in Science was ‘method’ but I insisted on writing ‘methord’ even though I was familiar with the word ‘methodical’. And later in life when I started my first self-employment business venture, I had difficulty spelling ‘fee’ – I was tempted to write ‘fea’. Such moments are embarrassing and can put you off writing, or at least only sticking to words you can spell. My attitude to learning changed as I approached the age of 16.
Excerpt 5
My dad worked in a factory making motorbikes and he was well thought of. So it seemed natural that his son Roger should be offered the chance of work in Dad’s factory, even though he had died three years earlier. So, soon after graduating, I was invited to the office at Villiers Engineering Wolverhampton, dressed in my blazer – ready for work. “Your dad was a true engineer”, I was told. “We want to help you but you are no use to us here.” This hurt deeply. I had been led to think that I could work as a personnel manager, HR as it is known today; but I couldn’t even spell ‘personnel’, I was one ‘n’ short. “You need to see to work” I was told.
Excerpt 6
Dear God,
You made all of me. From the hour that my dad made love to my mum, you were on it! Planning and managing my life in all its detail. Sometime during the second month in the womb, you caused or allowed something to go wrong with the development of my eyes and possibly my ears,. You already knew the implications of all this and you already knew what was to come over the next, at least, 86 years. You knew that it was wartime, bombing, stress and anxiety. You knew my parents had already lost twins and that I too would be born early, a blind baby. You knew there would be lots of medical stuff! And hospital visits. Despite that fragile start, you set me up to see, hear and think a little usefully. You allowed me to stop bothering with you for nearly fifty years but you brought me back to you, stayed with me while I almost died of cancer and claimed me as your child as you always intended. I thank you God for your faithfulness to me and for your love
EXCERPT 7
I took exceptional pride and pleasure in finding work for a a truly deafblind young man who totally relied on deafblind manual communication, finger spelling. Having helped him secure an assembly job, I spent three weeks with him in the factory where we both set to work assembling riveting tools. Within a couple of weeks he was on the way to almost holding his own, keeping up with his more able mates. As well as this I taught him the finer points of factory language, including being a Wolverhampton Wanderers supporter. We found him lodgings in an old folks home and he quickly learnt the route and carried with him a note explaining his deafblind situation and journey plans in case he got lost. In the event, one of the senior residents found a whole new lease of life befriending him, accompanying him too and from work and even sorting out his evening meal – a win for inter-generational cooperation. He worked there for more than 20 years and saved the state a fortune.
EXCERPT 8
I retain many happy memories of Condover , and a few sad ones. Princess Margaret paid a royal visit in the late Sixties. While in my classroom, one of my star pupils, T, spoke up and said: “Princess Margaret. Mr Hinds wants to kiss you.” After a shocked silence, I found myself giving her a hug. She was a wonderful sport, chatting to the kids and showing a genuine interest in what they were doing. One of my pupils,
EXCERPT 9
It did not take me long to realise I was not the right man for the job, and had been promoted just that little bit beyond my ability. I loved the children and we had much in common with the same visual disability. I felt for them being shut in, constrained within an institutional environment, being watched and assessed and being away from their homes and families. I made the mistake of not being a strong disciplinarian at the very time when the cane was no longer available as it had been for the previous headmaster. My style was to talk and listen to children when they were in trouble, and that went down like a lead balloon in Sevenoaks where the chairman of the governors was all for the school uniform and regimentation. It soon became obvious that there was much more to running a school than teaching and the children: The roof and drains of the old building needed attention and almost £200,000 had to be spent to rid the mansion of unwanted vermin.
EXCERPT 10
RNIB’s young CEO, Ian Bruce, had commissioned a survey of the needs of visually impaired people throughout the country and appointed marketing managers to every department. I was back in the right place and with views I wanted to express: One weekend, I a attended a National Federation For The Blind meeting. The NFB was, at the time, the nationwide voice of the blind. Ian and I formally debated that RNIB should focus on blind people and not on the much larger visually-impaired population. The needs of blind and partially-sighted people are very different. I thought the focus on sight loss was too woolly and diluted available provision for those in most need, but I heavily lost the argument and by then the RNIB was publicly telling the world of the two million blind – sorry, “sight loss” – people. Such is the power of the modern commercial charity to set the agenda for years to come, with implications for ongoing welfare and benefit expenditure.
EXCERPT 11
Part of my hospital vision had been to create low cost computer software so that blind people everywhere could use Microsoft’s Windows without the mouse they could never see – everything being controlled from the keyboard and everything speaking, whether it was being typed or appearing on the screen. Such software existed and we used it most days in our training; but it was expensive and out of the reach of most people, especially in countries with low incomes so I contacted my old Friend Paul blenkhorn who was by then professor o Computer studies in Manchester. He was keen to produce his own screenreading software. We charged £80 for “LookOut”, as it was called, instead of the usual £500.
EXCERPT 12
I suppose I keep hoping the digital vision and sound technologies will keep me going as a human hybrid, the technologies becoming more and more an extension to my weakening mind and body performance. I am someone that, so far as I know, cannot be further helped with my sensory losses by medical science but who knows the future! My hearing aid is my salvation.
EXCERPT 13
I experience huge fatigue when looking/reading for any length of time over two or three minutes. Low vision friends tell of similar experience. Even with the latest and best electronic magnifiers, this fatigue does not go away it is reduced. You quickly get to the stage where you want to rub your eyes, scream and just do something else, anything else that is not visual. Crazily it took me years to really rely on speech output and listen rather than look when reading or writing. It’s as if your brain compels you to keep looking while you have some sight. It’s so obvious, this low vision fatigue that I could not believe it needed academic research to prove its existence. We certainly need to adopt a way of life which avoids it where possible. Low vision fatigue used to be called eye strain, but it was and is not the eyes themselves that were strained. it is the mental effort involved that soon lead us to feel drained. We have been rightly urged, on the other hand, to look, look look, to use our vision rather than lose it. But the fatigue is very real, My hope is that, when professional awareness training is delivered,(sadly too often by seeing people), sensory fatigue will be listed amongst the major lived experiences.
EXCERPT 14
The problem as always with human affairs is this: Each of us have a subjective experience and only some of this can be measured, categorised and improved. The level of seeing and hearing can actually be measured as being a nuisance, mild, severe or profound. A normal level of seeing can compensate for hearing losses and a normal level of hearing is mighty useful to a blind person. Developing one’s sense of touch, Braille skills, has played a big part in my being able to work, read, write and make a good fist of daily living and manual skills over the years. But…and it is a huge but…we start getting into deep trouble when we insist on using the great brand word “deafblindness” to make general statements.a For example:
Deafblind people are isolated
Deafblind people depend on touch
Deafblind people need a hearing aid
Deafblind people are poor
Deafblindness is amongst the worst disabilities
Deafblind people are vulnerable
Deafblind people are unhappy
deafblind people need an assessment of their needs and rights
deafblind people need a Care home
deafblind people need a support network.
It seems to me that only the final above statement is valid across the board and possibly valid for all humans; but getting back to the charity story, Deafblind UK for many years has managed specialist accommodation for twenty needy clients in Peterborough in addition to its outreach services. It maybe, then, that the charity needs the brand and the large number of potential beneficiaries to capture the public imagination and compete successfully in the rat-race for funds. As with the charity, so with us individuals. We too may need the deafblind label even though we may know in our hearts we are, most of us, blessed to be able to maximise our remaining, weak or strong, vision and hearing skills, more or less effectively, especially if we can open our minds to adopting modern digital aids.
To summarise, Instead of asking “Is there any vision left?” or “Is there any hearing left?” I think we should ask: “How is this person using the sensory information they have?. This would significantly shift the research focus. We would be learning about individual capability rather than deficit; meaning rather than measurement,; lived experience rather than classification based on sensory loss. Clinical tests ask: “What is the person unable to do?” Research on residual senses asks: “How does this person use what they do have?” The methods we use shape the truths we are able to see And when the methods are dominated by measurement, testing, and categorisation, they inevitably miss the deep, multi-sensory, meaning‑making world that deafblind people actually live in.
Excerpt 15
Fixing someone is not always good if it means they lose their sense of being in charge of their lives. Help must never be imposed. It must be invited, welcomed, and never actioned without the participation of the one needing the help. Offering superficial help – help that keeps the helper safe – Might well be a cop-out. On the other hand, real help requires, on the part of the would-be helper, vulnerability, openness and the willingness to learn something significant and new from the interaction. I have sat in on organisational plans and project, millions to be spent and yet, no thought of consulting the beneficiaries and no beneficiary clamour for the great work itself.
EXCERPT 16
I knew and know that I was very loved by my mum and dad and that this comfort has sustained my self-image throughout my life. I did not think about being blind until I was seven and it did not hit me I was deafblind until I was forty-six. To end this section, Just a clear message: If you are lucky enough to have the services of an expert in dual sensory loss, take full advantage and learn all you can. This section is merely a reminder that parents do have a road ahead if such expertise is absent. And, at the personal level, my parents, supposedly ordinary working people, made a pretty good job of things against all the odds and long before today’s plethora of knowledge and provision, and all that while bombs were dropping during the second world war. This gives me hope: hope for future deafblind children and hope that we can trust the ordinary devoted parent to do well, even if or when specialist resources dwindle.
EXCERPT 17
My understanding of sight loss babies is that the world is very small, little more than can be reached by tiny arms. It’s no coincidence that most of my infantile memory relates to me being tucked in bed. The learning area must be small, cosy, and sometimes hard and sometimes a soft box room area; Hard being suitable for the child to learn to echolocate and soft for rest and relaxation.
Early words, to be real, would include “stop”, “shoe” “cuddle”, but out of reach words like tree or house may come later. Talking/babbling on a toy phone, imitating significant other people can be delightful.
Baby is likely to take great pleasure in enjoying your silly mouth farts and other noises.
Miniatures and objects that don’t feel or smell like the real thing may not work for the child.
Safe household objects are good for play.
My experience is that “no” comes first and questions requiring a “yes” response have to be encouraged.
Finger-feeding is so sensible if you can’t see at any age where there is sight loss. Fingers tell you what the eyes don’t see. This takes on a whole new dimension if there might be something in your dish you want to avoid. For years I hated chewing, especially chewy tough meat which made me gag and taught me to be a wary eater.
EXCERPT 18
Sometimes I have useful sight and hearing, sometimes I don’t. I have never felt any embarrassment with my dog or my hearing aid, but when I was younger and had more sight I do confess to popping the white cane in and out of my pocket or briefcase as my feelings of confidence and mental discomfort ebbed and flowed. So what is going on here and will it help to attempt to bring some of these issues out into the open?
EXCERPT 19
Most people assume that human experience is built on sight and hearing and that meaning flows from what the eyes see and the ears hear. They imagine that without these channels, the world comes smaller, thinner, somehow less real and, dare I say, not fully human. That is not the case.
EXCERPT 20
I think a lot about world affairs, politics and powerful people even though I have often no clear idea of their names, and spelling has always been a challenge for me. Names often sound like aural mush. Like many in this position, I have been known to avoid using words or names for fear of getting them wrong.
Excerpt 21
So who is the expert on deafblindness and whose language gets closer to whatever the truth is?…. I tend to think there are two sorts of expert, each with their own language and followers. I think of myself as a micro-expert and I think of my deafblind studies course tutor as a macro-expert. My experience and language is subjective and largely first person. Professor Peter Simcock’s language on deafblindness is measured, objective and expressed in the passive voice. My language reflects emotion, often my emotion and is somewhat imprecise and sometimes unmeasurable and what I am describing is not always capable of replication.
Excerpt 22
Like others, I have since performed many roles a father, teacher, husband, advisor, lover, lecturer, consultant, Headmaster, and again recently, university student. Interestingly, much of my work has been in some way amongst my sight loss or deafblind peers. There are likely to be many reasons why an old deafblind man is currently so busy writing his biography alongside his wish to share experiences which may be of use to others. Sensibly, I should be resting and leaving things to youngsters because I have done my bit. There is, however, that nagging wish to prove myself once again; to reach an acceptable standard meriting some genuine praise whether as a human being and or as a deafblind person
Excerpt 23
The imagined judgement of others might well be the most powerful in-the-head intruder. when you’ve spent years navigating systems that demand proof, measured statements of damaged sight or hearing, justification, audiograms, explanations, Training courses; you develop a survival voice that says: “Don’t draw attention”; “Don’t claim too much”; “Don’t make people uncomfortable”; “Don’t risk being disbelieved”. This voice feels like embarrassment, but it’s actually self-protection. It’s the part of you that learnt to keep yourself safe in a world that doesn’t understand your sensory loss.
Excerpt 24
The sense of smell is also helpful, for instance, knowing when we have reached the fish and chip shop by its smell, or identifying that your teacher has been in the room by their particular lingering fragrance.
Excerpt 25
what do you think of when you hear the word “tree”? Does it bring to your mind’s eye a silhouette of a tree? The letters spelt out? A dictionary definition? For someone who has never seen a tree it may bring to mind the texture of gnarled bark under the hand, the smell of sap, the sway of branches and swish of leaves in the wind, a shady spot to sit, the crunch of fallen leaves underfoot in the autumn, a quiet woodland walk away from traffic noise and vehicle stinks, a tactile diagram of leaves, a tactile sign on the hands. These are direct sensory experiences, just not visual ones. Nobody has direct sensory experience of atoms, galaxies or democracy. That hardly makes one guilty of verbalism when using those words. Maybe, though, seeing people describing the experience of deafblindness may well be guilty of verbalism.