Visual Impairment in a time of change: Self Understanding As The Basis For Effective Living

Return to Blindness and Visual Impairment

Presentation given at Conference for employees of Institute for Blind and Visually Impaired Young People and Adults in Copenhagen and Vision Centre Refsnaes for Children in Kalundborg

Date: 18/04/2006
Venue: Copenhagen, Denmark

Abstract: In helping blind and severely visually impaired people to live full and active lives, there is a major distinction between the congenital (or paediatric) and the adventitious condition; the former requires a complete set of tools for self understanding, empowerment and functionality in a social and autonomous setting while the latter requires the ability to maintain skills brought into blindness in the face of their new situation and rapid social change. The fundamental assumption in framing any training and rehabilitation policy is that the default position is one where the trainee wants what her peers want. In this context the presentation looks at the domestic environment, employment, travel, communication, citizenship, style and relationships within the dialectical framework of autonomy and collaboration.

1. Introduction

Every year my wife and I make something that is much more than a ritual journey to walk among the pictures in the Musée D'Orsay in Paris. These are by no means the finest pictures to be found even in Paris where the Louvre and the Musée Picasso offer their respective riches, nor are they even the finest pictures of their kind. There is something to be said for the quality of their Barbizon holdings but there are numerous places with a better representation of my favourite painter, Monet.

So why the Musée D'Orsay? Well, the simple answer is that it is the place which holds the largest number of pictures I know well; and I can comment even now on their comparative merits after almost 30 years of total blindness because I have cared enough to keep alive my precise perception of many paintings. At a very practical level, I find little difficulty in remembering Dutch and Flemish painting - even Breughel the Younger is manageable - and the same applies to other schools of realism and, at the other end of the spectrum, the formalism of 20th Century painting, from Picasso to Mondrian, has stayed firmly in my collection; but there is something about the shifting perspective of the impressionists that requires constant attention.

In the context of life skills training, the most obvious thing to say at the outset is that a congenitally blind person could not have written this introduction which I have used as an example of the difference between the two kinds of blindness, the congenital and adventitious; and notice, my comments did not begin to be highly specific or technical: I did not make a single reference in my discussion of painting to a named colour, to the quality of light, to the illusion of depth, to conventions on line and form. My point is that to do so in the cause of deepening the aesthetic reach of congenitally blind people would be to embark on an extensive academic exercise, to help the person know why seeing people value painting; but to explain this point is nothing like explaining painting so that blind people can enjoy it. True art tells us about ourselves within a social framework; this kind of artistic explanation can only handle the social framework.

The understanding of the sense experience would also be problematic. What draws the eye in a sculpture is not what draws the unseeing hand; a line that exists through visual occlusion is not a line to a hand that cannot use hand-eye co-ordination to leap between points on that line; there is something eerily opposite between the luminosity of a mirror or a piece of glass to the eye and its lack of texture below the fingers, indeed, in some ways the experience is inverse; the better it looks, the more boring it feels. Which raises some very interesting questions about the way in which blind people are taught to touch, if, of course, they are taught at all. Sculpture, primarily concerned with line and proportion, is primarily a visual medium.

And so you would have to say in the context of total, congenital, blindness, that art appreciation classes would have to be highly specialised; whereas for me, as somebody who went blind after having a little, high quality, short range residual vision, the classes would need a little adjustment, much of which I would have to negotiate on an ad hoc basis depending on the subject: some topics, such as Renaissance religious art, would be simple enough; some, like the changing style of Picasso, would require some negotiation; but trying to imagine an unseen Jackson Pollock would be impossible.

What I intend to do is to match analysis with constructive proposals as I go along; so behind what I have said there is a basic proposal:

<PPT 2>

Nobody should be allowed to qualify as a professional worker with blind people unless they have undertaken formal training in description which should contain at least three facets: description for people with standard vision; modifications for people with adventitious sight loss; further modifications for congenitally or paediatrically blind people.

I understand that there is a whole infrastructure that must go behind this: we need a much better understanding of gradations of vision, psychological outlook and how the two are connected. We need much more understanding of how low vision operates inside three metres and, even more so, inside one metre; but the main point holds in any case; we cannot expect severely visually impaired and blind people to understand the visual world, even in a rather formulaic fashion, unless we are professionally equipped to describe it. And if we are not prepared to do that is professionals in blindness and visual impairment then we must break the professional monopoly and import people who are properly qualified in description, such as journalists and novelists.

This is just one example of the approach I am going to take in this presentation. I will attempt to deal with some of the larger, basic issues such as:

Self Understanding & Empowerment
Preference & Relevance; and
a Structure For Life Skills Training.

But I will then go on briefly to discuss some practical aspects of:

The domestic environment
Orientation & Mobility
Communication
Style; and
Relationships.

I will then try to close the circle by linking my thoughts on empowerment with the problem of the power deficit.

2. Self Understanding and Empowerment

Blind people live in a surreally unreal world. Indeed, that world is so unreal that some people think that viable integration is impossible and that blind people should operate as far as possible solely with other blind people. I understand the logic behind this position but in a very real sense, society is full of people who do not fit properly; looked at the other way round, society only works because we are all different. There is, however, no doubt that the difference between blind people and those with standard vision is enormous and chronically under-estimated; it follows from this that the problems associated with this reality gap are also chronically under-estimated. Society is deeply disturbed by blindness to an extent greater than that for any other cluster of syndromes - those whom the gods do not kill they make blind - but the discomfort has never been fully rationalised; and so we view the condition with horror and then make very few allowances for those who suffer from it.

Not unnaturally - and this will be one of the underlying themes of my Presentation - the problem is much worse for congenitally than adventitiously blind people. There is a quite commonly held view that it is worse to lose something than not to know what you never had; but this can be objectively dismissed as sentimental nonsense, an attempt to make congenital blindness less awful than it really is.

A person who is blind from birth can have no concrete idea about the impact of visual imagery on society. Unless she inflicts it or is a victim of it herself, she knows nothing, outside theory, about violence; even if she is sexually exploited she still has no idea about the impact of sexualisation and pornography. The effects of these deprivations are enormous. It might be argued that to be protected from visual violence is a good thing; but it tends to generate naiveté which in turn often leads to apparent callousness: naiveté because such people cannot see the pained face or the body bad; callousness because war and death are simplified into generalised concepts. A seeing person retains thousands of images of different sufferers; and the seeing person revolts against the violence and wants to change it not just because of a theoretical principle but because this is reinforced by the visceral experience.

Again, some people might say that those who do not see sexualised imagery and pornography are better off; but its use is so ingrained that it must bear some strong relationship to natural human behaviour. Sexual experience confined to direct contact is necessarily much more limited and impoverished than the rich sexual experience of the visual world. How many of us, making love with a partner, have the image of somebody else in our head? There is a great deal of moralising about the depiction both of violence and sex but they are the foundation of much of our high culture as well as our popular entertainment.

Behind this lies a much deeper form of deprivation and that is the lack, implied so far, of distance vision. Many years ago I went to a conference which was in a multi storey hotel on an island between three major highways. I was trapped there for a week. At the airport at the end of the conference a colleague said to me: "You must have had a lovely week, that really beautiful interpreter could not take her yes off you!" to which my sad reply was that I had no idea I had aroused any admiration; the young lady had certainly not said anything to me. Perhaps she did not realise that I could not pick up her signals. Often this lack of communication is summed up in the idea that blind people cannot read body language but it is much more fundamental than that; not only can we not pick up body language intended for us, we cannot pick up whole continents of behaviour that were not intended for us. One of the problems which makes our lives so impoverished is that we do not have a serendipitous capacity. We can only grab what is within reach but lack the ability to move to vary our reach.

Perhaps of all the problems which blind people face, then, that of limited scope is the most crucial. Without serendipity and the exercise of broad choice, we are limited to what comes our way or to what we can painstakingly reach. This in turn places a massive responsibility on educators and those who are involved in rehabilitation. From the time that a seeing child begins to learn to read, his basic incentive is rebellion. The great benefit of reading is the ability to access material which adults would prefer you not to see. Seeing children invariably read magazines designed for those older than themselves. As children grow older the need for rebellion, for heterodoxy, for subversion, for deceit, grow steadily until there is a major crisis in adolescence. It may go against the grain, but here is my second major proposal:

<PPT 3>

The education and training programmes for blind people should provide them with the maximum opportunity to use tools which will give them access to what others would not want them to access.

I realise that there are serious risks with this idea. Teenage girls might easily become entrapped in a chat room by an unscrupulous participant; but can we really advocate a situation either where the teenager can be subversive under surveillance; or not subversive at all?

If the foundation of subversiveness is not well established, trainers will spend the rest of a trainee's life trying to fix the problem. The inbuilt difficulties of exercising choice will be reinforced either by a stultifying conservatism or by a kind of inarticulate rage, the knowledge that one is deeply deprived without knowing precisely how.

This, inevitably, leads me to the core topic of self understanding. Now there is an often quoted idea that people should simply develop themselves and not care greatly what other people think, but this is idealistic nonsense. What we all do is make comparisons with other people; we imitate or choose not to imitate; we make comparisons; we suffer from feelings of superiority and inferiority; we gauge consensus; we understand why wearing something or not wearing something might affect the way we are treated. the problem for blind people is that this set of comparators is reduced to an inflexible set of rules: don't wear jeans at a formal dinner; always behave formally at job interviews; be careful about using humour. Just to take these three: there are all kinds of trousers that might be described as jeans and it might not only be appropriate but stylish to wear certain kinds of jeans in a formal setting. In the second case, you have to think differently about an interview for a job in the civil service and in a public relations company. And in the third, not to use humour may sometimes be inappropriate. The problem is the accuracy of the balance that a blind person can strike between a general rule and the need to be flexible.

At this point we are on the border between congenital and adventitious blindness because both groups can suffer from this; the main difference is that the adventitious person has some clues about the nature of conformity and variance. At the very least the person who goes blind is aware that there is a serious problem which will not be entirely overcome whereas the congenitally blind persons will struggle throughout life to understand what the problem really is.

In the end, it does not matter how hard we try as teachers and trainers, congenitally blind people will always have a relatively poor measure of self understanding. Ideas such as beauty, elegance, chaos, metamorphosis, wonder will always be thin rather than rich, tending towards the abstract. How we fit into a world which demonstrates all these - and many other attributes - in people and in things but, above all, in ourselves, is a key social and personal preoccupation.

What we must do, then - and this is my third proposal - is:

<PPT 4>

We must always be very clear to explain to blind children when they are old enough and to blind adults the extent to which they must be careful to make an accurate assessment of their self understanding.

Individually, this will often mean being careful not to under-estimate and, therefore, to under achieve, but this lack of self understanding can produce the opposite effect.

This leads naturally to the second topic of this section, namely, empowerment.

Empowerment is based, critically, upon self esteem. Self esteem, properly understood, is a balanced assessment of and celebration of one's individual and social worth. At root empowerment is a form of negotiation; even if you are standing at the front of a group, as I am now, making a speech, empowerment is enforcing a deal we have implicitly made that I talk and, for the time being at least, you listen.

The traditional approach to training - and to rehabilitation for that matter - is to supply blind people with mechanical skills. When I worked in the Caribbean I came across a highly talented blind young man who had received formal long cane training in the United States but what he needed in the Caribbean, where there was no public transport, was the ability to persuade people to give him rides. What he had to do was to make sure he was such good company on the journey that the driver would be happy to give him a ride again. Do we really want people to be so inarticulate and powerless that they are imprisoned with their guide dogs or long canes?

The training of blind people has had such a low success rate in so many fields of life - work, travel, home care - that we need to take a fundamental look at what we need to do; and I suggest that the root of all our endeavour must be the following:

<PPT 5>

The basis of all education, training and rehabilitation for blind people must be their ability realistically to assess their own self worth as individual and social beings.

This is the basis for a level of self esteem which will empower them to negotiate on the basis that they have something to give as well as needing to take. This does not have to be ponderous; in a restaurant you read the menu to me and I advise you about the wine list.

We will come to many of these ideas again, so let me now pass on to those who lose their sight.

Earlier this year I was asked by Microsoft to make a presentation to some of its key policy makers about where it might improve its performance in the market. As usual, I wrote a clear, analytical presentation; but it contained a good deal of very bad news. So, at the request of the Chair, I began to list where the company was going seriously wrong. I had no idea how my analysis was being received until there was a little laughter almost at the end of my slot. In the give and take of a discussion it is much easier to work out what is going on, even if, as frequently happens, what people say contradicts what they really feel; but in this situation I was like a man in a radio studio talking to a distant audience. The only thing I can say is that at least I knew that was how difficult it was.

Which leads to my major point about people who go blind having been able to see. What counts is how accurately you can assess the relevance to your current situation of what you once saw. In the Microsoft situation I have just described, there is no real distinction between congenital and adventitious blindness; but in most of life the seeing person carries a mass of knowledge with him into blindness. The trouble is, the world changes and self understanding can become inaccurate. I term this concept Anachronescence, that over a period of time the seeing experience becomes anachronistic: film stars, pop singers, fashions, restaurants, one's own children, all change visually. The landscape that you knew is transformed by demolition and construction; your fine head of black hair turns grey; colours and styles go in and out of fashion; your television experience conveys fewer and fewer pictures.

Now all this may seem rather trivial in the overall scheme of things. What matters, after all, is the reality of oneself, family, friends work and leisure.

But the visual context in which all of these are lived is immensely important to those who can see. We live in a visual world and the way that world works is going to be ever more visual.

At the moment we are passing back from a temporary period of text centricity in society, back to the picture. Before the printing press it was real life pictures that informed decision making; that is why travel was so important, even though it was so difficult. Then came the printing press; but now written language is beginning to lose its richness and multi culturalism is pulling us ever more towards the graphical. The cerebral world of text suited blind people admirably so that, for example, the blind English poet Milton was Foreign Secretary in the middle of the 17th Century. Until roughly the time of the industrial revolution it was possible for an educated man in his late 20s to have read every book that was worth reading. This tradition of cerebral, symbolic, articulate literacy gave bright blind people an opening; but the cultural balance is shifting ever more away from the word to the picture.

But it is even worse than this. Not only are the pictures multiplying and moving, giving rise to unlimited nuance; and not only are they moving but the movement is aleatoric and unpredictable; and not only are they unpredictable but their overlapping and cross reference is bewilderingly complex.

Whereas modernists worked within fixed and stated conventions, schemas, frameworks - whatever you like to call them - post-modern art, discourse, manners, are all shifting phenomena resulting from bricolage, you literally build your own life, culture, style and coherence. The peculiar problem for blind people is that they have a severe imaginative limitation: the congenital blind person cannot judge finely between two offerings of bricolage; and the adventitiously blind person can draw no very precise parallels between bricolage she saw and loved and what is being offered now.

Nonetheless, in spite of the graphic and the improvisatory nature of much of the cultural material we all have to deal with, the whole point of negotiating is to set out what you have and to make deals. The very fact that verbal articulacy is still going to be required in specialist fields means that blind people who develop these skills will have something to offer. What we need to think about, however, is not an autonomous exercise of skills, which is unrealistically restrictive, but teaching blind people to collaborate with others in a negotiated setting. Most of all, we need to understand in much greater depth how we can work with blind people to effect a successful collaboration between the visual and non visual elements of our culture.

So, here is a fifth proposal:

<PPT 6>

Empowerment is a much broader idea than autonomy.

The visual impairment sector in general, and North America and Scandinavia in particular, have been unhealthily obsessed with autonomy which is an ideological fiction; very few seeing people wish to exercise uniform autonomy, they just wish to choose. Some people have been so obsessed that I have had to tell them the story of the disabled person who lived in an apartment block; when moving apartment, everybody else was allowed to ask for help; but not the disabled person. Even at a less extreme level, we must be careful not to rank autonomy above collaboration; the less good you are at collaboration the more you will value autonomy; but both must be deliberate choices.

Having said that, we do not know very much about the ability of blind people either to act autonomously or collaboratively. What we have tended to do is identify a series of mechanical tasks and decide on a functional basis what should be undertaken autonomously or with help. A good deal of this parcelling out has been ideological. There has, for instance, been a much stronger ideological force behind independent mobility than there has been behind independent access to private correspondence even though in the past two decades the first has become much more difficult and the second much less.

My conclusion is that the issues we are about to discuss in detail are not ideological in the least; so let me sum up where I think we have got to:

<PPT 7>

To be ideological about life skills is to fall into the trap of defectology.

What, then, we must do is to establish some rules:

First, what matters is not autonomy per se but the ability to choose between autonomy and collaboration
Secondly, that choice will largely be a matter of environment and individual capability but
Thirdly, collaboration depends upon self esteem which is the basis for any successful negotiation
Fourthly, Negotiation requires that both sides have something to offer.
Finally, at the root of all these principles there is the underlying need for us all to work together to improve the way in which we help blind and visually impaired people, congenital and adventitious, to have much deeper self understanding.

There are two components to this which are the assessment of individual capacity and preference and the culture within which these are operated but:

<PPT 8>

Culture is not the same thing as conformity; people must be free not to conform as long as they understand the cost.

Here, in summary, is what each person must know:

What is special to each as an individual as opposed to what is behaviour copied from culture.
The limits of culture within which individuals operate so that each can choose to conform, test boundaries to the limit or deliberately over-step.
The price of conformance and non conformance; and

It therefore follows:

Above all, do everything deliberately and nothing by accident.

One conclusion from this topic which I think is uncontestable is that ideology fills a research vacuum. Very near the beginning of this presentation I mentioned society's horror of blindness but its tendency to be harsh with the social ineptitudes of blind people; if I am right, collaboration, as well as autonomy, presents us with a set of problems which require research rather than simply assertion.

Having established a broad framework, let us now look at preference and relevance.

3. Preference & Relevance

Talking about research, which I was only a moment ago, for six years I edited the British Journal of Visual Impairment and in that whole time my favourite quote came from a wonderful rehabilitation officer, John Crossland, who said: "As I carry out my duties I am more often asked how to roll a joint than bake a cake".

This leads us right to the core of our topic but, first, just a note about terminology. I recognise the classical distinction between the training of congenitally blind people and the rehabilitation of newly blinded adults but I will use the simple term life skills training for all cases and use the context to indicate the nature of the trainees.

The issue of trainee preference is a very difficult one. If a burglar goes blind and asks a rehabilitation worker to teach him how to climb ladders, force windows and pick locks then we would presume that the case is pretty clear cut; but if a trainee asks for the skills to do something in private which affects nobody else, such as, for example, rolling a joint, what is the response? On the one hand there is the principle that workers should not collaborate in preparing for activities which are known to be illegal; on the other hand, the worker is a facilitator who should not impose limitations on the trainee. As this is such a tasty little item that I am going to leave you with it as my task is to look at a practical framework; but it does highlight issues which are much less clear cut such as the access by blind people, particularly teenage children, to pornography or information which may be harmful. The trainee may also want to be taught to use dangerous machinery or to travel independently in a big city which may present dangers.

There are three linked principles here: <PPT 9>

Always tell the truth, particularly about the diagnostic prognostication of residual vision, unless there is a very strong professional reason not to do so;
Be realistic in analysing trainee preference.
The trainee must have the last word unless there is strong professional advice to the contrary.

Let me illustrate the first point with a story. When I was 18 the ophthalmologists agreed that sooner or later I would lose my residual vision, probably sooner. I undertook a full course of independent, long cane mobility under blindfold. Six years later I lost my sight and when I left the eye hospital after my blinded eye was removed I travelled home alone using my long cane.

Of course, facing blindness as a teenager or losing sight at any time is distressing but lying about it won't make it better. There is no point saying either that blindness isn't really a problem or that everything will be all right; because it is a problem and everything won't be all right. It is only on this basis that you can arrive at a consensus with the trainee on user preference.

A major component of preference is relevance or context. Here is another principle:

Unless you have a specific indication from the trainee that matters are otherwise, you must assume that trainees want precisely what their peers want.

Now, as we have noted, this can present something of a problem if your trainee is a member of a criminal gang but mostly context is your best starting point. For blind teenagers their real concern might be the difficulties of going clubbing. The major barrier here, of course, is that they can't lip read, so they are deaf as well as blind; so they cannot use a conversational strategy to make up for the loss of vision; they can neither select partners visually or aurally; so they must stand around waiting to be chosen; and the chances are that they will be so frozen by their inability to see or hear that they won't be chosen. This is where strategy comes in. There is absolutely no point in designing a strategy which allows these teenagers to cope in a club by showing them how to find the bar and the toilet while the club is closed and quiet. Even if they can manage these simple functions in loud noise, the object of clubbing is dancing, dating and mating. If you just want to dance, go with a group of friends; if you want to date, sort that out in advance; if you want a one night stand, find a different hunting environment, such as a bar where people are accustomed to moving about but where the music is not too loud. Some things can be adjusted on the spot, some things need a different environment.

To be blind is to live in a chronically, intensely ergonomic world of planning and severely restricted flexibility.

This clubbing situation would cause problems for any blind person and the experience on the surface would be similar; but of course there is a difference between trying something for the first time which turns out to be difficult or impossible, and finding out that your loss of sight has made something difficult or impossible.

The concept we need to hold onto here is the difference between means and ends; if your end is dancing then it is possible in a club with some good friends; if your aim is dating then a club is not the only place to go; if your aim is mating then a club for a blind person would be the last place you would want to go; so you have to analyse the user preference very carefully.

Another point to be borne in mind which is frequently overlooked is that: <PPT 12>

Trainees should not usually be trained in a sealed environment.
Training people without their family, peers and carers is unrealistically difficult.
We also have to remember that what is relevant changes.

The model for training which we currently use was inherited from medicine; the social services ethic borrows from the centrality of the confidential doctor/patient relationship; we do not share our problems, we hide them. This might be appropriate for the treatment of mental illness or a sexually transmitted disease but it doesn't work in life skills training. Pursuing that medical model, the idea that a blind person can undertake one training course, as if it were a single episode illness, and then live the rest of her life without any more help is clearly incorrect. We also have to deal with changing circumstances; we will go on to see in later section that: takeaway meals are useful; fashions change; and the benign urban independent travel conditions of the 1960s have long gone.

Finally, on the question of relevance, having thought about individual trainee need over time in the light of personal and external circumstances, we have always to return to the possible. Not only is the trainee's time and capacity limited, so are public resources. It is foolish to pretend otherwise. This means that we have to articulate the need for life skills training in a way that accords with public policy. The idea that we can assert a right in this respect is only viable as long as we are not competing with other assertions of rights. the positive side is that dealing with a low incidence problem like blindness does not cost much compared with other problems but the negative side is that it does not really count politically. We need to couch our political rhetoric in terms that will be most effective; and this may mean abandoning a theoretical rights approach in favour of more practical considerations.

In doing this it might help to bear three factors in mind: <PPT 13>

There are many more critical problems with wider impact than being blind
Just because you recognise that the cause you represent is obviously worthy it does not mean that other people will automatically think and feel the same way
If you make unrealistic cost/benefit claims in the short term it will damage credibility in the long term.

The economic arguments are complex because if you are asking for money from one Government Department on the basis that it will save money for another Government Department, this will almost certainly not be persuasive.

On finance I want to make two proposals: <PPT 14>

First, individual life skills funding should be on a voucher system which allows the trainee to cash in the voucher for services from any agent. Vouchers should be issued on a regular basis and the user should be allowed to accumulate them.
Secondly, daily living allowances should be tied to trainee need on a realistic calculation of additional living cost.

For the last two decades there has been a good deal of campaigning around these ideas but the economic case and the strategies for overcoming government compartmentalisation have been very poor. There is nothing easier than making a theoretical claim for the right to communal money but, as a matter of public policy, getting hold of this money should not be easy.

I suspect that part of the problem with public money (more outside Scandinavia than within it) is that results seem to be hit and miss at best; and mostly miss at worst. The intrinsic problems within the sector are now being compounded by developments outside visual impairment which will further threaten funding; these include: a demographically ageing population which needs intensive health and social services; a greatly increased awareness of child abuse; and the rising cost of multiculturalism.

Looking at life skills training in our sector across the developed world, it is clear that we have serious under performance. I believe this is because the approach has been unsystematic; and so I want to turn to proposals for a rational structure for life skills training.

4. A Structure For Life Skills Training

When I finally lost my sight I never undertook formal training. Apart from the video analysis which I will talk about later, I never even undertook informal training. What I was offered was inflexible, traditional, mechanistic training in a residential home. Now I know that this has changed over the last 30 years but not by as much as I would like. It is still easy in Western Europe to see extremely traditional training based on the residential centre. Again, as in the previous section, the problem is that tradition fills the research vacuum.

In an attempt to start us off constructively, let me sketch fours, simple, over-arching principles: <PPT 15>

Keep everything as simple as possible
Rank trainee priorities
Match priorities against input and trainee resources
Decide what the trainee can control and what must be negotiated.

All these maxims may seem obvious when put down in this way but the process is usually not so disciplined and sequential.

Let us take two cases, a blind school leaver looking for her first job and a person in their mid '40s blinded in an accident.

What the first person needs above everything else is a firm platform of confidence that will enable her to face an unpredictable world of relationships and work. The newly blinded person will, above all else, need to stay precisely where they are, in the same relationships, in the same house, in the same job. The school leaver will have urgent needs but these can be treated on an agreed schedule which sets sequential priorities within some sort of theoretically logical framework; the trainee will need to learn about herself before we can work out how she will fit into the world. Whereas the other trainee will be in a situation where there is no time for elegant theory: the current employer, bewildered and instinctively wanting to fire the newly blinded employee, will need some kind of guarantees of competence over a fixed time period, a good example of my earlier point that training must be opened to all concerned parties; the family will need to know how far it must intervene and when it must stand back, particularly if there are children who tend to be generous in front of outsiders before reverting to selfish and manipulative behaviour in private; transport for basic needs will need to be worked out before independent mobility training can be considered.

This contrast highlights the importance of simplicity and ranking. The usual life skills training frameworks are both too complex and too rigid.

The third point, about putting the needs ranking alongside resources, is also underlined in these two cases. As we noted earlier, the teenage blind trainee may have totally unrealistic expectations which rational ranking may down play; in the second case the emotional state of the trainee may well limit trainer inputs. It is important always to remember that the trainee as well as the service provider, has limited resources.

If you look objectively at the history of life skills training during the last fifty years I am sorry to say that the twin pillars of braille literacy and independent mobility with a long cane or a guide dog are way out in front of any other subjects. These are immensely resource consuming for the provider and the trainee. They are disproportionately consuming for the newly blinded person trying to hold on to a job; and they may well, incidentally, be far too resource consuming for children in the educational environment.

We have already made reference to the fourth principle, about establishing the degree of trainee control and the balance between autonomy and collaboration but this needs a little more elaboration. Collaboration critically depends upon communication but both kinds of trainees are immensely prone to poor communication. The congenitally blind person is frequently never taught how to self communicate effectively and the newly blinded person too easily slips into wooden facial expression and posture. This is more than an aesthetic problem; it severely undercuts negotiating effectiveness because it is one of those areas where society, irrationally, does not make allowances. It can, for example, be extremely difficult for a blind person to know when a neighbour has finished talking so that it is possible to reply; but speech patterns are so different and many people speak so poorly that it is all too easy to interrupt and this error is severely punished.

The natural reaction to this set of problems is to put the emphasis on autonomy and that has been the key failure in the sector. Blind people are not largely autonomous out of choice; they lack the basic skills for collaboration with their seeing peers and they are often deprived of the financial and infrastructural resources for collaboration.

The major question at the conclusion of this largely theoretical discussion is whether the pursuit of autonomy has metamorphosed from being perceived as an unfortunate necessity into being a core ideology. My suspicion is that so much training has been historically formulated to deal with the graduates of residential schools for blind children and has been seen to fail in the key task of collaboration that autonomy has been elevated into an ideology. In a rather strange way, which I hope will emerge from the practical section of the presentation which is to follow, collaboration is more difficult but it is also much more rewarding than autonomy.

5. Practical Matters

I only have time to say a few sentences about my list of practical topics until I come to relationships, when I will try to link the first half of this presentation with the conclusion.

a) The Domestic Environment

There is no place, we might think, as safe as home, but in fact the opposite is true. Cookers, electric irons, kettles, dangerous machinery, half open doors, greasy floors, electric cables, rucked carpets, cooking knives, are just a few of the dangerous hazards that come to mind; but, behind this, perhaps the worst problem is that home is where we relax, where we stop concentrating, where we smoke and get drunk, where we get out of bed in the middle of the night, where our children feel free to be untidy; and it is also the place where there are the highest expectations of us. We might struggle at work or in the street but we are supposed to master the domestic environment as part of our personal competence rating.

When I was at school I was taught all kinds of home skills but when I lived on my own the two problems I faced were broken glass and butter, neither of which were on the curriculum. All the training I have seen is much too clinical, ordered, sequential; it is like learning how to dance; the choreography is pre determined, sequential; there are no bystanders throwing beer onto the dance floor and all the other dancers behave nicely; you occasionally tread on your partners' foot or vice versa but that is the worst thing that happens.

For congenitally blind trainees there must be a high level of danger and randomness under supervision; for the newly blinded person there must be constant reminders of danger.

For both groups, the key is self organisation. I cannot live in a house where I do not control the cupboards and the freezer. For most people who can see, tidiness means putting things where you can't see them; for a blind person orderliness means knowing where everything is.

It might be tedious at first but the relentless ergonomics of housekeeping become a habit. If I want to: put some plates away; put a bottle of wine in the fridge; empty the bins and find a book I work out the logical ergonomic order which not only involves cutting the journey to a minimum but also takes into account how many articles I can carry over a particular sector.

At the functional level we must learn to adapt, to forget traditional ways. The most important piece of technology in my life, after the computer, is my talking microwave cooker; but I have had to develop special ways of using it instead of the standard cooker. Its use would be limited without the deep freeze but more frequent without the takeaway. If you are going to provide blind people with a reasonable living allowance to compensate for their blindness this ought to take stress into account; often the stress of cooking justifies more takeaway food. For some trainers using a microwave or, even worse, ordering a takeaway pizza, is some kind of cheating; but we always have to ask why a skill is necessary. In the world of the freezer it is also important to emphasise that dates are important in labelling; and the rules of unfreezing and re-freezing are essential.

In my own case I have given up obsessive clothes labelling; I have a simple rule: never wear two patterns together; contrast a patterned item with plain items. This in turn means that I cannot sort the white from the coloured items for the washing machine; asking for help with clothes sorting is less trouble than asking for help with clothes labelling. I have never learned to use an iron; I am frightened of irons and that is the end of it.

For me, as a braille reader, the biggest risk I run at home is damage to my hands; I was never taught to protect them and I regard this as an absolute priority.

b) Orientation & Mobility

Unlike the domestic environment where a good deal of routine, tedium and risk is unavoidable, we are allowing, even encouraging, blind people to suffer far too much routine, tedium and risk out in the streets.

The first, and critical point to make, is that the discipline which allows independent travel is known as "Orientation & Mobility" but there is far too little emphasis on the first at the expense of the second. This leads to a micro management approach to travel which is very similar to the map reader's problem.

If a person has poor orientation they naturally turn to a map. they then spend all their energy on decoding the map instead of using the limited orientation capacity which they have; so the map use complicates the issue rather than simplifying it.

A few years ago we hired a car in Lyons to drive down the Rhone. It was late afternoon and as my wife reached for the map I simply said, just drive with the sun on your right side and sooner or later we will be alongside the Rhone to the South of the city. What applies to big spaces also applies to small ones. There is not much point legislating for tactile maps to be posted in the entrance halls of major buildings and shopping centres if the user has poor orientation. This is an area where congenitally blind people are at a definite disadvantage but where newly blinded people need rational reinforcement.

On a broader canvas, although public transport is more widely used in Western continental Europe than it is in the United Kingdom and even more so than in North America, the concentration of energy and resources on independent travel either with a long cane or a guide dog is totally unjustified:

First, a majority of blind people will never achieve this goal
Secondly, there are better things to do with the time and the money
Thirdly, too often the ranking of the skill depends upon professional self identity rather than client need.

Let me start my critique from one simple position: blind people want what their peers want; and what their peers want, by and large, is door to door travel in a motor car. A tiny minority may well want to use public transport, particularly in the inner cities and on occasions where alcohol is to be consumed but sighted people are modest public transport users. Independent travel is both time consuming and stressful and it gets more difficult as one gets older and takes on additional responsibility. Personally, I find in myself a world of difference between an adrenalin-saturated young man, bent on maximum independence, with a high concentration level, few responsibilities and electric reflexes; and the man I am now, risk averse, more concerned with outputs than inputs, with great responsibility and slowing reflexes.

Not long ago I completed a very good contractual deal and celebrated with a couple of glasses of red wine; glowing with the success and the wine I made my way with my long cane across one of London's major railway stations and suddenly I was aware that the end of the cane had gone over the edge of the platform; it was only by leaning back very hard that I was able to brake in time. Most of the time I have much better things to do than think about three dimensional fractal navigation and I believe that I am not alone in this.

My default position, then, is that all blind people should be entitled to a taxi service responsive to their basic education, employment and lifestyle needs.

We need to take a much more rational view of mobility, including the cost/benefit of current services, the economics of a taxi service and a true assessment of stress levels.

In short, what we need to do is to turn travel from being a blindness icon into being a servant of chosen ends.

c) Communication

Having dealt with the iconic status of independent travel, I might as well say a very quick word about braille. Within the whole field of two way communication between blind people and the world, braille should be a very small component for a very small number of people. As I remarked earlier, the age of symbolic language as a required skill has been very short and limited to a small part of the earth. If people choose to be communicated with in braille or to communicate in it, there are adequate technological methods of reducing the pain to near zero but the exercise is resource intensive and for newly blinded adults in particular, learning may be very difficult.

As I have spoken at length before in Copenhagen on the subject of braille[1], I only want to make a very few, simple points: <PPT 17>

Communications strategy should start with a needs analysis
Secondly, That analysis will sow that contracted braille is only appropriate for a highly focused academic strategy most suited for congenitally blind children of higher than average ability
The time used to learn braille and the resources used to use it must be assessed against other client needs.

When I have made these points before I hae been confronted with an argument which I can summarise as the "Right to read Grade Two Braille". Well, for a start, there may be a right to access information but I doubt this can be stretched to specifying a medium but, more important, this right is being asserted by professionals on behalf of trainees. If we think back to what I said earlier, I place an extremely high value on trainee choice; if a person decides that learning braille justifies the time and resources, that is fine. But what most often happens when a right is asserted is that professionals are advancing an ideological position which bears very little reference to aggregate client need. Braille, like independent travel, is iconic for the professional, not necessarily the client.

As with other fields of training, I think that we have to be user centred and rational. Given what I said at the beginning about the communications gap in a graphical world, fluent braille use, and even unlimited audio, does not amount to a communications strategy on the input side; and not even learning to type is an adequate strategy on the output side.

There are clear differences here between congenitally and adventitiously blind people which will be immediately apparent when I set out some basic communications principles: <PPT 18>

Communication consists of accessing, processing and creating information products
Effective communication requires a high level of media literacy which enables the user to assign weight and value to content
Effectiveness depends critically upon integrating information in collage or in even more holistic fusions.

You can see immediately that these three propositions present all blind people are gong to have problems in carrying out all these processes but for congenital blind people there are almost insurmountable problems.

As a starting point we can see that integrating text with other text presents some mechanical problems but, intellectually, it is not very daunting; it is the way we write essays and the way in which we adjust our opinions through time; in this context we both observe and deliberately break rules. The same process goes for music where we can see how different tunes relate and might be merged; we can learn the rules for the sonata and then break them. For the person who can see the same process obtains for the visual arts; images can be fragmented, superimposed, enlarged, contracted and overlapped; and, again, there are visual rules which can be observed or broken as, for instance, in the notable case of Escher.

We have already noted how blind people are deprived if they lack useful residual vision but the problem is complicated by the way in which we mix our media. For we do not just talk like our television celebrities, we imitate their facial expressions and their gestures; we use graphical shorthand for huge tranches of prose; the old saying is that a picture is worth more than a thousand words but I might now say that a logo is worth 100 Euros.

Not only do we live in an intensely multimedia world but we are now in what critics somewhat contentiously describe as a post modern culture: most of what we build is bricolage; we are intensely self conscious; the layers of parody and self deprecation are multiple; the Danish cartoons of the Prophet flash round the globe and are added to by a French cartoon much more offensive than the originals; people who apparently have nothing useful to say become world celebrities.

Underlying this richness is the human need to exercise our most distinct faculty, that of pattern recognition. Blind people can be taught how to exercise this faculty in language and text but in multimedia the task is daunting.

Faced with this complexity our response has been rather feeble. For the past decade we have concentrated on web accessibility as if it were the holy grail. In the rather narrow sense of access to text, of course web accessibility is crucial as it will, for example, greatly enrich the braille and enlarged print experience and open up global text libraries in synthetic speech; but we should not concentrate on this to the detriment of giving blind people some understanding of the multimedia world in which they live.

Further: <PPT 19>

The concentration on accessing and processing has led us to place less value than we should on creativity.

As we know, this has two major dimensions: first, it give pleasure to the creator; secondly, it gives the creator worth in the perception of peers. I fear that we are so embarrassed about the doubtful outcome in the case of peers that we forget the intrinsic pleasure of creativity. As I have already noted, to be blind is to live in a highly organised, somewhat bleak physical, emotional and intellectual environment where creative outputs would be of immense assistance. I have often wondered why the proportion of blind musicians who explore music through jazz is such a small percentage.

For it is, after all, in creativity where we give instead of just taking as accessors and processors. I talked early about our problem with understanding our world but part of the way we can compensate for this lack is by learning how to project ourselves self critically into the world and that means that we must learn to create ourselves and to create output which we can use in negotiation.

This must start at a very basic level. When I lost my residual vision I went to a friend who was an out of work film maker. He shot video of me for days on end, pointing where I was making incorrect gestures; before you can do it right you have to make sure you are not doing it wrong. Fortunately, as my experience shows, much of this can be taught. Creativity is not the preserve of Kierkegaard, Nielsen, Bohr, Holberg and Utzon.

If we are to get the balance right we need to be much more constructive and this essentially means exploring creativity in two ways: first, the best form of assessment is peer review, so blind people should be encouraged to enjoy the work of other blind people but; secondly, public creativity requires a degree of empathy with the public and this needs to be taught; in many ways to make a pot requires the same kind of judgment as to buy a dress.

d) Employment

Not surprisingly, if we have made so many false moves in areas of life that are uncompetitive, these are bound to have a severe impact on blind people in a competitive environment. Admittedly, education is competitive to some extent but if six people go for one job, there is only one winner.

As I have largely avoided a technical discussion of education, I also want to avoid a technical discussion of employment options but I do want to make three major points:

First, we quite correctly condemn employers for judging blind people on the basis of what they cannot do rather than on what they can do; but the visual impairment sector is pretty poor at dealing with people who have unusual preferences.

It is all too easy for us the drop clients into a very limited number of boxes: physiotherapists, telephonists, lawyers, teachers, most of which jobs, incidentally, are no use to people with below average gifts. If professionals are only really interested in stereotyping the brightest who come their way, they can hardly criticise reluctant employers.

Secondly, whatever I propose - and this is a good situation to be in - it will be better than what we have.

Employment strategies for blind people in rich countries since the Second World War have been wasteful, frustrating, stereotyping and unadventurous.

Thirdly, the economic models for employment have been too rigid.

My major proposal is that in addition to continuing a campaign with employers where we lead by good example, we should experiment with mixed economic models where public sector funding for benefits is not given to individuals but is invested in mixed ability co-operatives. Models such as these have been tried but in every case I know the blind people have been supervised by the other members of the mixed ability group. As I often used to say when promoting self employment for blind people in Africa, if you give the blind person the budget she will exercise the control.

I said I did not want to go into technical details but I cannot let this opportunity pass without exploring for a moment the prospects opened up by radio over IP. I believe that blind people should be encouraged, within mixed ability co-operatives, to lead a new movement in community radio over IP, not just for other blind people but for the population as a whole. I think this is important for three reasons: <PPT 21>

First, blind people should have the ability to talk about themselves without intermediaries who, historically, have not been notably good at representing them
Secondly, blind people should have the choice of listening to general radio or radio designed for them as blind people which includes, for example, special descriptive material of products, services, people and events which seeing people do not need
Thirdly, there are areas of radio dealing with quasi abstract material which some blind people might be good at mastering and presenting.

At the other end of the scale I also want to say just a brief word about blind people with very narrow skills bases or those who suffer from severe additional disabilities:

Our society is rich enough to support people whose only legitimate purpose can be the pursuit of a very limited form of happiness.

We no longer live in a world where he who does not plough cannot eat. We are still trapped in a value system partly religious, partly capitalist. Not only should we support our weaker brothers and sisters, we should also affirm their vocation to find as much enjoyment as they can.

6. Style & Relationships

Before coming to some conclusions, I want to leave hard topics to one side and deal briefly with two rather softer but important topics, Style and Relationships.

a) Style

This presentation has been peppered with references to style. You can see why it is such a difficult subject for blind people. In earlier times style was the preserve of the wealthy but it is now a universal preoccupation which is inseparably bound up with individual and social worth.

I have already mentioned the logo; I might equally have referred to the lacing of trainers, the orientation of furniture, the colour of nail varnish, the shape of wine glasses, the angle of a hat, the vogue in walking, the reach of a celebrity, the selection of clip art, the length of a skirt, the way to eat chicken, the list is endless but each component says something not so much about us as about our relationship to the world and the way we choose to conform or rebel, the extent to which we choose to change with the times or refuse to change, the degree to which we are prepared to ease relations or keep them tense, the level of control we wish to assert. In other words, style is a plastic phenomenon which therefore requires constant nuance; and, as we have seen, blind people are bad at nuance. This is an area where no amount of effort or rule making can quite pay off. It is an area where autonomy is most desired but where an intermediate intelligence is most vital.

We have so far not talked specifically about intermediate intelligence but it might just be the one idea which sums up all the principles I set down earlier:

Blind people do not need rigid, self regarding, self consciously professionalised trainers, they need strong, rational, sympathetic intermediate intelligence.

b) Relationships.

Of course there is one area where intermediate intelligence is most needed and least wanted and that is in our development of personal relationships.

Again, this is an area which is highly technical and I have no time to go into detail but, again, I do want to establish three principles: <PPT 24>

There is no such thing as a perfect, multi faceted relationship and, therefore
Blind people are not necessarily limited to less successful relationships than seeing peers; but
They will have to maximise their strong points and compensate for their weak points.

For people who go blind the problem is adjustment to a new world of narrower options of expression and empathy, for a person who is congenitally blind the problem is learning a grammar of physical and emotional expression that is flexible enough to be viable until such time as mutual rule making is a stable phenomenon.

Although the raw material of such a subject is love, the ecology is competitive. Perhaps the best that can be said is that much of what we do in forming and maintaining relationships relies upon self modified behaviour which we learn and which, to some extent, can be taught but, after that, we are on our own.

Well, that is the general theory but I do not subscribe to it. When relationships started with the nucleus of the family and radiated outwards through mediating structures like the town, the church, the place of work, gradualist self sufficiency was, at the very least, theoretically possible. Blind people might be over patronised, misunderstood, less prosperous than their peers, but they were, if in a rather impoverished way, viable. In our world of almost universal automobile ownership, massive social mobility, episodic and often overlapping intimate relationships, multiple complex dependency networks, all within a context of voluntary, unpredictable, behavioural norms, the modernist, structuralist approach is totally inadequate.

Working out of an institutional base we are not in a very strong position to deal with this new culture and there are no easy solutions. This is an area which requires a great deal more thought than we can give it today.

Underlying all the practical problems that blind people face, however, there is one topic which is hardly ever openly discussed and that is the issue of the power deficit.

7. The Power Deficit

Interestingly, as a side line, the move to establish what we call "integrated education" for blind children borrowed its language from the race politics of the United States where the Civil Rights movement was calling for racial integration in schools; another term to emerge from this broad political movement was "Black Power" which, in the feminist movement, modulated into the term "Empowerment".

The word has hardly infiltrated into the blind and visual impairment sector. There has been a good deal of rhetoric about organisations "of" and "for" blind people in which the ideology of consumer control in the organisation "of" has been dominant in the last three decades, but if you look at products, outputs, training regimes, the two kinds of organisation are just about indistinguishable. Where power has been exercised by blind people it has been in organisational governance, a kind of sublimation of more worldly desires.

In a world which works on power relationships I am deeply suspicious of any discussion of the disadvantages of being blind that does not deal with the issue of power.

There are always the irritating and trivial problems of having to wait for people, being stranded in strange space, being served food without explanation, in other words, being on the wrong end of all kinds of carelessness, thoughtlessness and disrespect.

But the question I often think about is this; if you are negotiating a hard bargain with another person, how are your power relationships affected if you need his help to find the toilet? I suspect it might be a "him" thing; I would like to think that women negotiators are more humane, more fair, more respectful; but the root problem is the same. No matter how effective the training may be in autonomy and collaboration, no matter how well we help blind people to acquire self esteem and as great a degree of self understanding as possible, there is still the chronic power deficit. Again, some moralists will say that the deprivation of power, like the protection from depictions of violence and pornography, may be a good thing, but meekness is a voluntary virtue quite different from enforced powerlessness.

The apparent answer is for people in a negotiating position to concede a degree of power, to accept the power assertion of blind people, but that may be regarded, in itself, as artificial. Still, I suspect that is the best one can hope for.

It is in the nature of the exercise of power that the main purpose of constructing society is to limit how it is exercised and, in the best of circumstances, to cultivate self limitation.

There are two quite proper responses to this problem: the first is to accept the natural limits of one's power. Blind people are by no means unique in suffering from an intrinsic power deficit. The proper reaction is to make alliances with other people with power deficits so that the sector of the population with a natural or acquired power surplus are forced to limit their advantage. This is why it is in the interests of blind people to make alliances not only with disabled people but with ethnic minorities, poor people and women.

The second quite proper reaction, which we have concentrated on in this presentation, is to analyse individual power advantages. This has often emerged in the distorted form of assuming that blind people have peculiarly sensitive hearing or even "A sixth sense". Now we may be annoyed by these ideas but they do at least reflect society's wish that we should have some inbuilt advantages to compensate for our deficits. This point simply underlines the importance of working through the whole set of competences of blind people to analyse and develop their strengths.

Of course, nobody would argue that exercising economic power will compensate for a power deficit but it surely helps. Again, it might be argued that this is the granting of a concession but the people who usually argue this point are the richest blind people, safe with their institutional salaries; I have never heard it argued by the poor.

Before ending on a personal note, I would sum up the situation as follows:

<PPT 25> The Power Deficit

Blindness is one of a range of characteristics that generates a social and economic power deficit
Good analysis and state provision can mitigate some disadvantage.

Which brings us aback almost to where we began. At the very heart of our enterprise to help blind people to enjoy fuller lives as citizens, creators, consumers, partners’ family members and friends, the central concept we need to hold onto is the development of a clear, complex and reflexive self understanding which relates to the rapidly changing, complex and self consciously ironic environment in which we live.

8. Conclusion

In drawing to a close I want to tell you about the time when I checked into a hotel in St. Lucia. I was offered a ground floor room next to the kitchen. When I asked for a balcony I was refused on the ground that I might fall down the stairs. I put my credit card on the counter and the response was: "You can have any room you like".

I tell this story because in a materialist world money counts for a great deal. One of the great problems of blind people is that they are relatively poor; it is less intolerable for blind people if you have plenty of money. Of course, the moralists point out, money is not everything. So let me try honestly to sum up my life as a blind person.

I lost my residual vision shortly after graduating from Cambridge and Harvard. I earn approximately 1/5 to 1/10th of what my peers earn. I have access to 4% of published books and less than 1% of all other material. I am shut out from the visual world, even though I can use much of its language and remember some of it. I have relatively little control over my environment: where I live, who I meet, how I relate. I cannot wander the street looking in shop windows, admiring pretty girls, learning about architecture, catching the eye of a trinket seller, comparing myself with the rest of my fellow creatures, comparing the appearance of a bunch of coffee shops and choosing the one that looks most pleasing, imagining myself in somebody else's clothes, imagining myself with somebody else's face, imagining myself.

I waste valuable time waiting for people, waiting for help, finding the lost, planning the next, regretting the last.

And yet I have not met anybody on this earth with whom I would change places because I am fulfilled beyond description. So, if it can happen for me, it can happen for any blind person but if it has been so difficult for me, how must it be for those who have fewer intellectual, financial and emotional resources?

So much is possible, so much is left still to be achieved!

[1] Learning to Read Braille: Barriers, Challenges and Opportunities; Speech given at the Braille Symposium Copenhagen, 16^th– 19^th April 2002