From Brutality to Refinement: a new approach for a new century
given at the ANZAEVH Conference, Sydney, 11.i.99.
- 1. Conflation
- 2. Functionalism
- 3. Independence
- 4. Professionalisation
- 5. Functional Assessment
- 6. Including all a person's concerns in a collaborative package
- 7. Trading within communities
- 8. Recognising an array of expertise
Presentations of this sort are dogged by the clumsiness of the terminology. I will use "blind" to mean having very low or no form resolution and "visually impaired" to mean that broad spectrum of people with perception from poor form resolution to those who cannot function without adaptive tools or techniques; the relationship between this group and those who have poor accommodation is complex and I will refer to it in the presentation. It might help both listeners and readers to know that I was born with monocular residual vision, was educated at a special school before being 'integrated' and lost my sight totally in my mid 20s. Before beginning I want to say how pleased I am to be here. This isn't a piece of rather hollow rhetoric; in the middle of last year I had the pleasure of editing a special issue of the British Journal of Visual Impairment entirely consisting of contributions from this Region. Those who have read my Editorial will know what I thought; those who haven't need to take out a subscription immediately.
One morning, my wife Margaret delayed opening her eyes for as long as possible, balancing the declining pleasure of sleep and the rising anticipation of seeing the sun streaming in through the windows. I wondered what it would be like to see what she saw; for it came to me with a jarring insight that brought tears that although I had seen, and still vaguely remembered, many dawns through many windows, I had never seen the dawn here, in the home where we have lived throughout our marriage. This isn't the deprivation I feel most; perhaps because of its kindness to my particular low vision condition, mixed with fragments of Sappho, it's moonlight I miss most. I stuck my hand out for consolation and picked out a girl drying her hair, stroking a Venetian glass egg on the way. Each of the objects on my bedside table - they rotate every three months or so - has some holiday association but they cannot compare with the photos Margaret sees, including some of me, as soon as she opens her eyes.
I heard the mail hit the mat, a sound that, after twenty five years of total blindness, I still cannot hear without wincing. I went down to fetch the mail and found that my weekend braille magazine wasn't amongst it; well, that would not arrive now until Monday. I picked up the papers, another source of chronic schadenfreude, made the tea and went back to bed for a recital of the day's news and comment.
How are you supposed to react to what I have just described? Are you supposed to feel sorry for me or has the grossly exaggerated feel-good assertions of blind independence Stalinists hardened your hearts? Might I, on reflection, excite pity for being deprived of pictures in the way that I would pity someone who could not apprehend the searing beauty of a Rameau opera? These are not casual questions just as not seeing pictures is not just collateral damage caused by my loss of sight. For years I have undergone the necessary pain of visiting art galleries wherever I have been, to try to stay in touch with the world of pictures, being reminded of things I saw and loved, learning of unseen pictures by artists I knew, trying to grasp the depictions of artists whose work I never saw. Each time I re-visit an old haunt I have lost something; not so much the composition of pictures which is easily remembered but more likely the quality of the light, easy to retain in 17th Century Dutch painting and in, say, Canaletto's Venice or Monet's Giverny, but not so easy in Holbein or Poussin. And, of course, I have played hide and seek with innumerable curators to touch Moors, Hepworths, Epsteins and Brancusi's La Forque in the Pompidou Centre.
At a less rarefied level, I now live in a world of wearisome anachronescence whose leading personalities are faceless; I can picture the Beatles but have never seen Madonna; I can still see my dead grandfather but none of my living grandchildren; I can remember my school uniform but now dress in fabrics of colours that hadn't even been invented when I lost my sight. I have forgotten what I looked like and don't know what I look like.
Still not sorry for me? Well, one of the contentions of this presentation is that you should be; to feel sorrow is an indispensable component of the respect to which I am entitled. Respect neither exaggerates nor diminishes, it accords what is just and attempts to accord what is fair. To ignore the blindness that is part of me is as bad as ignoring the rest of me because of the blindness. Undeniably, and even after a greater effort than most people dedicate to the matter, I am aesthetically deprived and, frankly, not many people now or ever in my life who have a professional role in blindness and visual impairment have cared much about this. I will argue that the rehabilitation models we have used in the 20th Century, what I call the "Brutalist School" have been based on three components that are all flawed - Marxist functionalism, Nietzschean individualism and Freudian therapy - and that teaching, training and rehabilitation activities concerning blind and visually impaired people, congenital or adventitious, require a deal of refinement so that they will enable communities rather than dominating individuals. to begin with, I want to look at four issues:
- The Conflation of a variety of syndromes into the portmanteau terms "blindness" and "visual impairment"
- The reduction of concern to a level of basic functionalism
- The false icon of total independence; and
- The professionalisation and mystification of the training and rehabilitation process and from there I want to call for much more emphasis on their collective and individual opposites:
- Assessing people according to how they function in real life
- Including all a person's concerns in a collaborative package 7. Trading within communities 8. Recognising an array of expertise.
By far the worst problem we have to deal with in blindness and visual impairment, within our own sector and in communication with the public at large, is the issue of conflation, of jamming together all kinds of visual impairment into one category whether we are actually dealing with conditions that are congenital or adventitious, traumatic or creeping, permanent or reversible. Our fund raisers have betrayed us all to such an extent that professionals are cornered and clients are crowded by an ignorant public which, of course, contains almost all of the future visually impaired people who will carry general attitudes with them into their period of impairment. In spite of overwhelming statistical evidence and direct family experience of visual impairment and blindness which shows that hardly any even totally blind people use guide dogs or read braille, the public image of blindness is that it is traumatic, harrowing, total and permanent whereas almost all of it onsets gradually, is irritating, partial and can be radically slowed down, arrested or even reversed.
This, in turn, leads to an over-estimate of the interventions required to deal with it and the budget that must go with the interventions. Nobody confronted with the headline blindness figure and the image of the dog-dragged dot-dependent sage, or fool, depending on the caricature, can possibly swallow the budgetary consequences. If each visually impaired person is going to be that expensive to deal with it is best to sidestep the problem. It is convenient, then, that the political correctness of integration and community based rehabilitation and the need to cut public sector budgets fit neatly together. Let me give you an account of a typical incident in my life. I got into a London cab with enough paperwork for a long journey. The driver asked in an aggrieved voice why I didn't have my dog with me and was incensed when I said I didn't have a dog and, indeed, didn't like dogs. I failed to mention that one of the reasons I don't like guide dogs is that they divert attention from me to them to the extent that people quite often approach a a guide dog, talk to it and depart without ever acknowledging the presence of its owner. I explained that in the United Kingdom of the 500,000 Registerable blind people only 4,500 have Guide Dogs. I opened my briefcase and took out my work. He asked how I became blind, how long ago and what can be done about it. I am now quite accustomed to this stunningly blatant interrogation in respect of my medical history. I could have told him I was busy with my work or that it was none of his business but I patiently told him the cause and the prognosis but pointed out that mine is not a typical case. Of course not, his grandmother went blind from retinal deterioration but she neither had a Guide Dog nor learned braille; she didn't need to, did she? At last I got down to work. As I paid the man a rather large amount of money for his pains he asked me whether I managed to find something to do with all my time!
At the same time, we have confused epidemiology with functionality to a terrifying degree. Epidemiological data, particularly when it is based on what people see at or outside 3 metres, tells us nothing about how people function; so carelessness with the data leads to the kind of conflation so beloved of the fund-raisers. Remembering what I said about people now seeing normally becoming visually impaired later, it is not difficult to see why so many people, even with severe visual impairment: refuse to classify themselves as 'blind'; are reluctant to register and because, in turn, registration is often the most powerful trigger to services, deprive themselves of the help they need. As a valued colleague, John Godber of the RNIB, once remarked: "nobody goes on 'glad to be blind' marches'.
We have also confused the need to justify our existence and that of our organisations through defining blindness and visual impairment and then claiming all who fall within the definition as our dependent sheep. That definitional framework might be useful for us but it is confusing for general service providers trying to serve our clients outside the narrow range of what we have to offer.
TESTLAB is a European Union project studying the way in which blind and visually impaired people can and might access general municipal library services. Here are some interesting observations from the research:
* When a person with a vision problem walks into a public library she is confronted with an unwritten, unspecified but widely held set of assumptions. If she has really thick glasses to help with unremittingly deteriorating accommodation then she is part of the library's remit; but if she is waiting for a cataract operation that will soon restore her sight completely then she is the property of the organisation for the blind. Never mind that the first case is more severe than the second, that they both pay taxes for public library services, that they both want to go on reading, admittedly radically enlarged, print, they are separated by a law as ancient as the Medes and Persians. What has happened is that the service definition used by specialist blindness agencies has hived off a sector of the population and drawn the line not only between those it serves and does not serve but has, conversely, drawn a line for the generalist sector; and woe betide any generalist that crosses it, stealing blind people.
* Secondly, the blindness industry has kindly stumped up some special access equipment to be hung onto library workstations. There is a speech synthesiser, a braille bar and a screen magnification package. The first two are often used but rarely in isolation; the screen magnifier is most wanted, particularly in conjunction with speech but none of the screen attributes are customised. None of the people who only want screen magnification are invited to use general terminals where the magnification on offer is as great as one character covering the whole screen.
* Thirdly, only the list of VI agency clients uses the special station and none of them use the general stations.
* Finally, the general physical environment - lighting, VDU and chair adjustability - aren't part of the specialist package.
The sad conclusion I have drawn is that we might all, at the level of our impartial perception, be in favour of what we call integration but our guts tell us that, were it to succeed, it might mean job cuts. And so, on with the dance of conflation, the fund-raiser's art, the epidemiologist's gloss, the professional's faltering step.
I will not linger for long over the concept of integration but as it has been a profitlessly dominant theme in the whole of my life and yours, a word is necessary. It should be obvious that you can't integrate somebody who has never been segregated; it should also be clear enough that the term arose from the need to get American black children, through bussing, out of ghettos into schools attended almost exclusively by white children; but blind children aren't born into blindness ghettos and don't need to be bussed anywhere.
In Fiji some ten years ago I heard this model of segregation followed by integration justified on functional grounds; take the children away from their communities for a few years to get their braille sorted out and then integrate them. People were resentful when I pointed out that this sent mixed signals to communities. Of course these children had been brought up in their own communities and those very communities would, of course, be capable of taking them back at a later date; but what actually was it that these same communities were incapable of which caused children to be put into prison without a trial? surely, it can't just have been braille tuition, can it? And, to cap it al, this course of action was being advocated by special teachers who had largely been instructed through distance learning.
Of course, it's a cliche and a truism but it's more often cited than implemented, that what those children gained functionally was undoubtedly more than cancelled by what they lost socially; as if, incidentally, there were some sort of clear line between the two. Part of functioning properly, as I will show later, is the ability to negotiate but, more obviously, children learn from each other more even than from their teachers.
There were nine of us in a safari vehicle of the Salvation Army School for the Blind. Mercifully, the driver could see; he was the only one. We were going for a safari through a game park which was home, so I had been told, to giraffes, elephants, lions and numerous species of deer. I was a bit vague about the deer because they didn't fit the neat stereotype of the giraffe, the elephant and the lion. The windows had to be kept closed and the air conditioning was on high. The six blind children asked strangely but understandably odd questions stemming from their passing acquaintance with soft toys; neither the blind teacher nor I were much use and the children were of no use to each other.
The illustration of the game park safari helps to blur the line between the functional and the aesthetic. What emerges from a quarter of a century of touring institutions where blind children learn is the bleakness of them; a few models and a lot of music lessons are what pass for an aesthetic education. I can almost feel your resentment at the charge; surely I am referring to a bygone age, it is so much better these days. Well, it isn't. The total failure during my time in a residential special school to realise the huge importance of television as a means of acquiring life knowledge has since been matched by the equally stupid dominance of the monochrome, static image CCTV over the full colour, moving picture VCR; and we are now repeating the error for a third time by ignoring the image enhancement technology ubiquitous in the print industry. I will deal with the technology issues in a separate presentation but I simply want to confine myself here to the moral issue. Our education system has been morally Cromwellian and aesthetically Stalinist. It's bad enough being totally blind or undergoing the chronic identity crisis of being partially sighted without being the victim of an implicit moral/aesthetic straitjacket.
Again, here is a blurred line between functionality and aesthetics; both, surely, should be invoked in respect of posture, dress and address. For where we once clung to faith hope and charity our world has come to rely on sex, money and style; and the greatest of these is style.
Part of our problem in dealing with functionalism as an issue is that we have conflated the way we deal with congenitally totally blind children and the way we deal with adventitiously blind adults. It is entirely right that congenitally blind children should be given life skills so that they can survive in and contribute to society as members of families, communities and political entities. Those who go blind in later life, on the other hand, carry into blindness with them a bundle of skills which may only need some adjustment; and many who go blind late in life may want very little help because, like the rest of their peers who can see, they don't want to do very much of anything after tiring lives at work or rearing families. For both sets of people, but particularly for the latter, what we offer is totally inappropriate.
Let's face it, the two biggest problems confronting most blind and visually impaired people are low economic leverage and low respect. So we offer them tedious courses in climbing stairs and boiling eggs. This is not the age of Eliza Acton, Anne Duchess of Devonshire and Mrs. Beaton but rather of Captain Birdseye, Colonel Sanders and Mr. Muscle. It is the age of MacDonald's golden arches not Old MacDonald's farm; of plastic worktops, unironed fabrics and microwave ovens. A remarkably, atypically honest Uk rehabilitation worker recently and notoriously remarked that he'd been asked less often how to bake a cake than roll a joint.
Further, the biggest single problems that most blind people face at a practical level are mobility and communications deficits, both of which are made worse by low income. Of course, because of the culture we live in, the one thing that social workers can't offer is cash and that is the thing most urgently needed. The next most important thing is campaigning, for free door-to-door transport services and concessionary telephone tariffs.
This is a good point at which to introduce a discussion about the concept of independence.
The notion of the independently mobile person is a piece of hubristic nostalgia. If many old people and, for instance, teenage girls, could walk alone, particularly at night, they would not; not any more. Almost everywhere the public transport that is indispensable for independent travel is disappearing; and, in any case, independent mobility requires a huge amount of concentration better spent on more pressing, pleasing or remunerative topics.
I had had a very good day negotiating a fascinating contract; as the day went on the possibilities tumbled and re-formed like the elements in a kaleidoscope. We'd had a drink to celebrate. I was elated, tired and mildly intoxicated. These were the days when I could not quite bring myself to ask one of the company to put me on my homeward train. I walked purposely into the vast concourse of Victoria Station and the mixture of sound, smells and the activity inside my head soon dulled my concentration on more practical matters. As bad luck would have it, my long cane didn't collide with a post or a shopfront which would have helped me to re-focus; I wandered on until I braked sharply, my cane over the edge of the track; without the good reflexes which have since declined in responsiveness, I would have fallen onto the live electric line.
I know that no mobility officer would ever wish to put a pupil at risk but what independent mobility requires is constant, high level concentration, to the exclusion of almost all other thought; and it requires bravery of an order that, even if skill survives, declines with age.
What keeps the mobility sector alive is not so much its utility as its symbolism of independence and self-reliance, to which I will return.
This leads directly to the issue of negotiating skills. For congenitally blind children and newly blinded adults the exercise of these skills is a problem. They are required not only for optimal functioning but for survival. People who cannot see the faces of those around them are, literally, negotiating in the dark. Never to have had that ability or to suffer its gradual loss present us with a key challenge because, in the end, blind people only make a fuss about total independence because they don't consider their discussions with sighted peers to be part of a negotiating process but rather a dominance/dependence relationship. Nobody in his right mind would undertake a solo journey with a long cane using public transport if he could obtain a lift in exchange, perhaps, for his charming company or a promise to perform a service needed by the car owner. Admittedly, the public attitude, ironically generated to a certain extent by our own fund raisers, makes a negotiation between equals very difficult but we have not done enough for our clients in this area.
Perhaps because the practical is so difficult when based on a model of total independence of a sort which sighted people would not claim for themselves, we have stuck with the industrial model of functionality for far too long instead of looking at network models. The functional, as I have said, has been made co-terminal with the arid. At the philosophical level, Marx and Nietszche should have been kicked out by Kant and John Stuart Mill; and neither of them should be allowed to, and would not have allowed themselves to, be followed to the exclusion of the pursuit of happiness through means other than the material. If we are incapable of dealing with the problems VI people face with income, transport and communications then there is every reason why we should concentrate on negotiation as a means of making life more pleasant.
At the heart of our problem is the notion of independence. Most people do not choose to be totally independent so why should blind and visually impaired people choose it? How we are independent and where we negotiate should be a matter of personal choice. I hate being helped to find the urinal in a public wash-room but I hate even more having to use toilets on railway trains if somebody hasn't checked to see that surfaces are clean. I'm not a member of the braille menus for all lobby; choosing food is a rewardingly social activity hardly diminished by not accessing the menu directly. In exchange for an elegant or jocular account of the food I will offer my expertise on the wine list. I can't read my printed mail but I know many people who can't understand a balance sheet. This is in no way to belittle the problems of not being able to see but it is rather an attempt to give it some proportionality.
A better objective, surely, would be self-determination. The two concepts are, of course, inversely related; more independence usually means less self-determination. We know this in respect of our political organisation, our trade, our communities and our families; self sufficiency is a narrow pleasure.
I'm sorry to have to use such an ugly word as professionalisation but I want to distinguish it from professionalism. There is a massive paradox at the centre of all we do; it is that if we were to be successful professionals, in the terms we define for ourselves, then we would be out of a job except, of course, that there would always be new clients. We define ourselves with a bundle of techniques - braille, O&M, daily living skills - rather than defining ourselves by our objective and working out highly personal achievement or adjustment plans. The reason that we argue so strongly for more funding because we do not have enough workers to work with our clients adequately is that we really don't want to sign off the client who only wants the simple things.
Joe lives alone but his daughter visits him regularly and pays for his telephone. he takes a taxi twice every week to the local pub. He doesn't cook well and can't be bothered to improve; he has a microwave oven and buys in convenience food and occasionally orders a pizza by phone. he doesn't bother with newspapers but the television is never off except when he is in his bedroom. Joe is lucky because his income is reasonable, even in retirement, and his aspirations are not great. He wonders why he receives occasional visits from a social worker, usually during his favourite soap opera, but he is too polite to ask questions.
I know, we just can't believe that's enough in a life as it no doubt isn't in ours but there are enough fully seeing people in our world who are satisfied with that lifestyle. Again, we have confused our ambitions for blind children and our need to accept the admittedly low aspirations of our elderly clients; and we have imported our love of "improvement" and "worth" into our assessment. If we are that thin on the ground we should confine ourselves to what generalists are unable to do and that, surely, is in the technical areas I have mentioned and in finding the right people to grow and maintain or simply preserve the power of negotiation which in turn promotes self-determination.
There may, however, be one area where a professional qualification is indispensable and that is in the area of counselling. I say "may" because, again, we have tended to generalise. There are clearly cases where people suffer from traumatic blindness which calls for an approach similar to that we might adopt for somebody who suffers a sudden bereavement but on the whole I think that the comparison between blindness and death is damaging and that counselling simply problem-orients the process. How can we expect the community at large to come to terms with blind and visually impaired people if we have to go through periods of mourning of the sort expected of Victorian widows? this reverts to my first theme; compassion is necessary for us all, particularly for those who are afflicted by any kind of distress but pity is for the helpless, for those who are not in charge of their fate. We have pity for Hamlet but surely we have compassion for the starving.
The mark of the true professional is good judgment and the mark of good judgment is restraint, in knowing when not to ply our trade. Our clients - as we still continue to call them - surely need friends, mentors, companions but they might not, on that account, need counselling.
Before ending this section I want to say something in our defence. It is practically impossible to say anything coherent about a section of the population which comprises congenitally totally blind people, those whose perception might critically depend on ambient light levels, car accident victims who lose all their sight in an instant, glaucoma sufferers whose journey into blindness is long, uneven and painless; and those who simply find reading more difficult than they once did but would not dream under any circumstances of thinking of themselves as anything other than growing old and suffering the inevitable effects.
It really is obvious but pivotal to what I am saying - which is why it occurs near the half way point - but we really ought to stop trying. We have been asked to perform the taxonomically impossible and have become victims of the obsession, resentful but persevering; we know it's wrong and say so constantly but we have not found a way to break out of this entrapment without damaging our identity in the process.
You will be pleased to hear that I resolved to devote less than half of my presentation to an analysis of what is wrong; and I have now finished this somewhat gloomy survey. So I will turn to what we can do to improve the lives of blind and visually impaired people in the context of the first years of the new millennium.
In an age of untrammelled individualism we have lost our innate understanding of respect which is why, when we approximate to it in language often termed "political correctness" it lacks spontaneity. No one can doubt, reading accounts of Charles James Fox's breach with Edmund Burke on the matter of the French Revolution which was itself one of the mighty foundation stones of romanticism, that their ability to separate respect from concurrence far outstrips anything of the sort today. As individualists we may pay lip service to the equal right of others to hold views different from our own but would we choose to spend time with them? Of course, the answer is that we no longer have to worry; compared with fifty years ago privacy is more affordable, travel is more accessible and life is longer; we are no longer forced to live with our extended families in cramped accommodation, thrust and bound into obligations of mutual inter-dependence that must overcome, if we are to survive, any number of personal differences. The era, now coming to a close, of rampant individualism, stony political ideology and political chauvinism has robbed us of the ability to empathise; we know it has which is why we take such pains, as morally sensible beings, to get our language right.
For the past few years I have been conducting a fascinating social experiment when attending conferences primarily concerned with blindness and visual impairment. At the beginning of the first evening I have tossed a coin. This determines whether my role on the first evening will be active or passive. If active, I decide with whom I want to dine at the makeshift large tables beloved of conference delegates. On the succeeding night I am passive and sit where the wind blows me; and so on; or vice versa, with the passive role and the first evening and the active on the second; and so on. At conferences as wide apart as the Web Accessibility Initiative, ICEVI, TESTLAB and IFLA the same thing has happened regardless of whether my first night was active or passive. On active nights I have enjoyed good conversation with working colleagues who have, I must admit, shown no signs of resenting my company, forced on them to some extent by my request to join them; on passive nights I have invariably ended up at the bottom end of the table, away from the principal participants, surrounded by blind people and those who don't speak English. This isn't to say that I dislike all blind people or that I don't occasionally enjoy practising the few foreign languages I know but this phenomenon is uncannily uniform. I could understand it, by taking all the blame on myself, if I was confined amongst the social equivalents of publicans and sinners on my first passive evening after an active evening; but the night after, on my succeeding active evening, people behave as if nothing had happened or, rather, they behave perfectly well. Given the nature of the conferences they can't plead embarrassment because of ignorance of how to associate with blind people; so what is it? I think it has something to do with respect.
We must re-construct respect. This is not merely a matter of professional necessity, it will become an absolute precondition of our survival in the next millennium; if we are to negotiate our way out of a recurrence of the Asian economic crisis, if we are to avoid Balkan bloodbaths, if we are to neutralise Pauline Hanson, if we are to maintain a global internet then we must learn not only to respect those with whom we disagree but also, simply, those from whom we are different; whereas the consequences of disagreement or, in this case misunderstanding, were once measurable, the global environment has introduced a dizzying kind of catastrophe theory which, at the socio-economic and cultural levels uncannily mimics our climatic woes.
To reconstruct respect we must start with the integrity of the object of our enquiry or assistance. Our starting point must be to ask what that person is and then what that person wants for himself and what difficulties he faces in living up to his own expectations; if such a set of objectives coincides with our own view that is a bonus.
Let me now turn to my second four topics.
5. Functional Assessment
Anybody who is not quite sure how difficult it is being partially sighted should read at least the first half of Stephen Kuusisto's book Planet of the Blind which describes in horrifyingly graphic detail how his kaleidoscopic - in the literal rather than the embracing sense - vision played havoc with any attempt at an organised life. He went to ophthalmologists and optometrists and they recorded his visual acuity before and after correction and, he cares so little he doesn't specify but I assume, they knew the optimal power of the lenses he needed; but neither of these factors, known or unknown, could have had anything but a marginal influence on his mode - style is too coherent a word - of life. His problem was that his parents - and therefore he - could not come to terms with the notion of blindness and so Kuusisto lived a precarious existence, almost failing to learn to read though he went on to be a gifted poet, riding a bicycle at the risk of his own life and that of others, alternating between social aggression and withdrawal because he lacked any basis of self-respect from which to articulate a negotiating position.
His, of course, is an extreme case which is why it's a good read (though the last part where he gets a guide Dog is less to my taste) but his account raises the fundamental question: what is the data for? What Kuusisto needed was a careful analysis of what his functional limitations were and how they might be overcome; calling this cluster of inabilities "blindness" was not only analytically unhelpful it was also psychologically damaging. This is not a matter of political correctness but of using the appropriate tool for the problem. I have already noted the complete mess we get into when defining blindness from an institutional perspective, trying to sort out those with serious accommodation problems from those with a medical condition awaiting intervention. Surely we are now refined enough to abandon this rather crude, brutal approach and see that what people need is an analysis of, say, their on-screen functionality and how it might be improved; they want to know how safe they will be on the road, walking, cycling or driving a car; they will want to know whether what they are seeing is what people with 'normal' vision are seeing or whether their brain is mending images broken by imperfect acuity; they will want to know how to deal with changing light, moving machinery, fine detail and massive vistas; and, above all, they will want to know the stability level of the analysis. What blindness or visual impairment imposes upon an already complex neural life is a whole layer of additional risk/effort/outcome calculation.
I want to go to a concert but I can't just pick up the car keys and drive off. I telephone ahead to the concert-hall, I piece transport timetables together, I calculate the fatigue of making the journey, I buy but don't read the programme, I achieve an optimal balance between dependence and independence with my allocated steward; I sit in my seat when it is over and am last out so I miss my planned train. You really have to want to go to a concert. This is, of course, a mild case of the supererogatory act but an even greater level of calculation and stress is involved in decisions about education, work, family life, finance and self-respect. This is the strange land of the fine balance, known to diplomats and lawyers but not natural territory for Miss average going blind; it is a rigorous, relentless, rationalising, ergonomic treadmill; no wonder some people simply drop out and do as they are instructed. It is this terrain that needs to be mapped in analysis, not the Snellen chart.
6. Including all a person's concerns in a collaborative package
Given the changes in our lifestyles - less public transport meaning fewer opportunities for independent travel, more instant meals, easier housecleaning and laundry - what should we actually be doing with our rehabilitation time? Added to that, given the very poor employment level of blind and visually impaired people of working age, what should we be doing to enhance employment chances and help people cope with their hours of potential idleness? What we can't do is go on as we are with a set of traditionally iconic skills that don't relate to the contemporary world.
I have already mentioned the importance of functional analysis, risk assessment and negotiating skills; I have also referred to the psychological impact which residual vision or total blindness may have upon an individual, on those in contact with her, and with society as a whole. I recognise all these matters as important but what i want to focus on is the way in which we make use of all our senses as a major contribution to understanding the whole person.
I think it is fair to say - though people often say this without knowing precisely what they mean - that we are living in an ever more visual environment. A learned person in Homer's time would not have found blindness an obstacle to formal learning which was entirely oral; Milton had read almost every book that a learned man of his age ought to have read; up until the end of the 18th Century, indeed, the corpus of given reading, the accepted canon, was narrow and well defined. We might be in an age of the visual but the first thing to remember is that more than 100,000 full length books are published in English every year; add to that the range of magazines, periodicals and the Internet and you have an incalculable, organic mass of information which might well lead to blind and visually impaired people being comparatively disadvantaged; and I will return to this in detail during my presentation on information technology, I mention it here simply for completeness; but look at the world of the image. At one time our trades determined how we dressed at work and our class determined how we dressed at home; but for the dandy there was little room for manoeuvre. Now dress is a key component of self expression and because it is such it is a key factor in how we are perceived. Then think of our interest in television; of the eyes in the soap opera that contradict what the voice says. Think of advertising, eroticism, nouvelle cuisine, the whitening and lightening of alcoholic beverages, ecru, coloured drinking glasses and mauve undies; design choices are personal statements. Whether you have never been able to make these choices or are now losing the ability to make them, surely there is a problem.
The language of vision is immensely enriched and complicated by the language of movement. From sitting to dancing, the body is a piece of kinetic art. We talk about this "body language" all the time but apart from frowning on nose picking and bent spines, do we really teach our blind and visually impaired people about body language? Do we, with their permission, video our students with residual vision and invite them to look at themselves and analyse how they might improve their presentation. It says much for our negligence that people still express surprise that I turn towards them when I am addressing or being addressed.
Past personal aesthetics and those associated with entertainment.
There are, too, social aesthetics. It has often struck me forcibly that I am atypically coldly analytical in discussing international affairs because I never see the pictures of starving children and shattered soldiers, of burning villages or widowed refugees. I do not see the homeless beggar in the street and only rarely hear him; I am aware of conspicuous wealth in an abstract way but it isn't forever in my face. Yet, having absorbed the horror, even in an abstract, a theoretical way, there is no waterfall, no distant peak to lend some perspective to the daily turmoil of human affairs.
At a yet deeper level, too, there is a challenge. Aesthetics is not simply a way of talking to each other, it is also an important way of talking to ourselves. There is the obvious example of classical music where our appreciation of a sonata is deepened through our understanding of its aesthetic language, it structure; having grasped the structure which we might discuss with others, nonetheless, we enjoy it in privacy and apply its cadences to our own personal circumstance.
I have been shocked throughout my life at the unaesthetic way in which music has been taught to blind people in contradiction of the great theoretical claims made for it; music enriches enormously but I'm not sure that learning to play is as important for most people as learning to listen. In a world where most people have, necessarily, average or below average talent the art of receiving is more important than the art of giving; valuing and evaluating the expression of others is more useful than self expression.
I turn now to what ought to be most obvious. For the blind person touch is important; again, on the basis of my experience the importance is much more often asserted than understood. Of course, many of us have been unfortunate enough to have been born into cultures that equate any human touch with sexual encounter in one of the odder reductio(ne)s ad absurdum of 16th century Protestantism whose rise coincided with the importation from the Americas of syphilis into Western Europe. I like Bill Winkley's intuitively pleasing story of the encounter between Mexican and North American educators of blind children where the North Americans thought rocking a blindism and the Mexicans thought it the result of a lack of loving physical contact.
At another level the failure to exploit touch is even more baffling. As I noted earlier, all my adult life I have waged a guerrilla war in order to touch sculpture. I can understand why the shiny or the flimsy might suffer from my attentions but I can't see how I could damage a Rhodin or even a bronze casting of a Degas dancer. I have been pushed into special visual impairment rooms with nasty fibre glass replicas and subjected to turgid tapes. I quickly want to show you just a few pictures from an exhibition I recently visited devoted to memorial art, gravestones. This unlikely collection produced some remarkably new ideas about how we might integrate learning by touch with learning other disciplines. This exhibition had memorials with:
- different textures
- different styles of writing, including Arabic
- biblical and poetic quotations
- tributes to historical figures
- realistic portrayals of social problems
- the live and the dead
- abstract conceptions
- radical treatment of form (bench, arch, bell)
- realistic portrayals of people.
To discover this exhibition was serendipitous for me but it should not have been; the tactile world should be the subject of our constant study so that we can wring out of it the maximum benefit for people who cannot see.
So the next time some clot of a taxi driver asks you whether, when somebody has no sight, their other senses make up for the loss - a question asked almost daily - remember what these other senses are: that the ear requires education; that we are frightened of fingers; that our society is eliminating smell; and that learning about food is now more important than learning how to cook.
7. Trading within communities
I remember when I first saw the WHO Community Based Rehabilitation manual; the size of a brick and as thick as two short planks. You have a community in which 20% of the people are fully engaged in work with the rest evenly divided between temporary and permanent unemployment; and the community will, on the basis of some notional return, sacrifice some of its slender resources to rehabilitate a person who has lost sight. This, of course, is the extreme case but it does put the situation into stark outline. Earlier I mentioned respect of which there are two kinds, the older, based on rank, and the newer based on what a person achieves for herself; this latter consists of setting personal targets and meeting them, it is about integrity of purpose and action, of prudence and a judicious degree of generosity, neither spending for display nor for personal credit. This form of respect, in a society where disabled people are ubiquitous and their number growing, is not only possible; I would go so far as to say that to cultivate this form of respect for disabled people at this exact historical moment, when their behaviour can have maximum impact, will determine the future of our world demographic make-up; we are on the edge of searingly sophisticated pre natal screening that will snuff out the life of any foetus with the tiniest chance of the mildest functional limitation and we are not far away from the collective and short-sighted selfishness of rationed health care and legislated euthanasia.
If we want to keep our society variegated in every sense, if we want the gene pool to be wide and genetic outcomes to be uncertain, if we want to live in a tangle of varied longevity then the model of subsidy and dependence, professional and client, competent and incompetent has to be overthrown, and quickly. As a society we are too selfish to put up with these dichotomies as the ratio between the able payer and disabled sucker widens, as fewer young care for ever more elderly, as job security diminishes and medical science advances. We have to establish a sense of community in which blind and visually impaired people play to their strengths and are seen to contribute; you might not be the great dictator's bodyguard but you could be his food-taster. For this to happen, professionals have to move from being teachers to being, at least at the public level, facilitators; they must walk a narrow path between harming the client by exaggeration on the one hand or under-estimation on the other; thus, the importance of analysis.
When I was elected to the Parish Council in my village there were some good jokes about my fitness to serve; this was because every Parish Councillor sat on the committee to discuss proposals for building alterations and new buildings. I sat through these meetings dutifully at first but found that I didn't contribute except to point out contradictory statements, which hardly made me popular with colleagues. So I got a rule passed that the planning Committee should have the status of any other committee and not require automatic attendance by all Councillors; at the same time I discovered that one of the real problems in the village was that minor communications failures, if left, turned into massive personal feuds which endangered community development; so I persuaded the Council to set up a Community Affairs Committee; I couldn't handle buildings but I could help with people.
Having got this far down an unorthodox route I might as well go the whole way. As a society we are so prone to information overload that we should be able to find productive work for people who are not so overloaded; maybe we need people who are trained to listen, who deliberately starve themselves of trivial information so that they can help us to see what is essential from what is peripheral or ephemeral; there might be something, after all, in the ancient notion of the blind sage but what we have to avoid is the stereotype and, of course its opposite; for every blind sage there is a blind fool. I think that the case for blind listeners, speakers, thinkers, food tasters and masseurs is pretty unassailable but we do have a much greater problem in size and complexity with people who have varying degrees and sorts of visual impairment. The hope must be that if we can break the stereotype and resort to detailed analysis we will find that many people with poor vision don't need the formal intervention of the blindness industry as such or, if they do, only to a very limited extent. Less likely but more desirable is the situation in which communities learn enough about poor vision to be familiar enough with its vagaries that the professional is not called in. Democratic societies have lost the heart to vote for higher taxes and so we will witness further budget cuts and be forced to reserve professionals for special and complex cases; why wait to be forced, we should make a virtue of necessity.
The area of community is difficult in a world where the concept of community is itself a piece of nostalgia. I am not pretending for a moment that we will keep physical, pedestrian, closed, enmeshed communities that not only know who is sleeping with whom but who wants to. I am thinking more of a network of relationships, often at a remote level, where people can play to their strengths and downplay their limitations; there's nothing so much in your face as a blind person tapping down the village street; you might ask him to tune your piano but would you expect him to be an Internet agony uncle.
8. Recognising an array of expertise
Finally, as this is a gathering of professionals, I want to talk about recognising an array of skills as part of the way in which we can work with blind people to improve their lot. For this perception I am enormously indebted to Gwen Nagel who managed to articulate what had been tingling vaguely in the back of my head for some time.
No community will respond constructively to intimidation no matter how kindly meant; if a professional gets heavy then the two major lines of community and family response are predictable: let the professional get on with it, we will take no further responsibility; what an arrogant person telling us we don't know about our own child, why should we ever let her in this house again? Nagel insists rightly that the different perspectives of the child or adult "client", family, community and professional are all important though they will obviously vary in importance according to circumstance. Here is what I wrote recently as a comment on the work of Nagel and other colleagues who contributed to the special issue of the British Journal of Visual Impairment:
"With an uncanny lndgeist our authors ... have skilfully re-arranged concert-hall practice so radically that the player-audience distinction has completely disappeared. The idea that children, parents and professionals play different instruments which must be tuned to produce a symphonic whole is a powerful metaphor and, in citing it, let it not be forgotten that a symphony changes key and tempo, combines instruments in different ways at different times and, at particularly pregnant or dramatic moments, employs soloists. This is not to claim that such a notion is solely an Antipodean notion but in most places where it flourishes at all the concerto with a featured soloist is still far too popular."
There may be vestiges of the old world and the old Century still working its corrosive way in dark corner of this Region but, on the basis of what I have read and heard, there can be no part of the world better equipped to face the new Century than this. It is not a matter primarily of resources, of training structures, of status or of technical facility - though all these are important - it is, rather, a matter of attitude and the attitudes set out in the pages of the Journal written by people from this Region are unexceptionably pertinent, liberal and practical. You are, perhaps, about to make a key conceptual breakthrough, to solve a problem which has dogged our every step since mainstreaming and community-based services became fashionable; is working with blind and visually impaired people so difficult that it requires professionals or is it so easy that anybody can do it with a starter pack and an occasional helping hand? The symphonic, as opposed to the processional model, is surely right. We don't want professionals, teachers, parents, communities and clients to walk in a fixed formation, following the band playing the music of tired, distant authorities, worn down by the monotonies and pomposities of legislation, regulation and, let's admit it, academic journals like the one I edit, we all want to be in the band which, of course, requires its own kind of training; rather than the fixed step and the predictable response we need to refine our technique, know when and how to play loud or soft, when and how to integrate or to stand out and know to a hair's breadth the benefits and perils of improvisation. We also need to learn when to stop playing and to watch and listen without ceasing. But for now, play on.