The Ability to use Technology as Sight Deteriorates: Time for a New Adventure

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Plenary address at ‘The Inclusive Digital Economy Network Working towards a Digital Economy inclusive of older and disabled people’ Events York Workshop following on from ADDW http://www.addw08.org/workshops.htm

Date: 25/09/2008
Venue: University of York

1. Introduction

Losing sight may be a physiologically gradual process but from experience of my own sight loss and discussions over the last 30 years with people who have undergone the same process, mostly when much older than me, the psychological impact is, to borrow a medical term, traumatic and this largely arises from three closely interlocking reasons:

First, the process is unpredictable, i.e. the capacity to perform tasks can vary on an alarmingly random basis, and in general people are better at handling dire certainty than uncertainty;
Secondly, varying or measurably declining functionality raises questions of competence and/or economic viability and social status;
Thirdly, behind the daily uncertainty is the long-term 'shadow' of on-coming blindness which has a peculiarly strong cultural negativity; after all, as I have often commented before, when the Gods decide not to kill you they do not actually make you mad, they blind you.

I simply wish to note these three factors as background considerations for a presentation that will try to deal with the issue of using technology to maximise functionality during a period of declining sight because trying to deal with the functional issue in isolation will not work; the technological and emotional aspects can not be seen as parallel tracks but must be taken together so that a person losing sight has the motivation to concentrate on the present and look to the future with a sense of purpose. A useful parallel in our field would be the problem of patient compliance with glaucoma medicine; because it will delay symptoms and not reverse them, many people simply give up.

In this presentation I want to suggest that there are three key skills sets which we need to consider in optimising the use of technology in the context of declining visual functionality:

Handling repetition;
Handling change;
Facing the future.

Naturally, these three aspects cannot be considered in isolation, so the distinction is only made to provide the presentation with some structure.

I have chosen the person-centred rather than the technology-centred approach because I think that the issues we are considering typify the generality that the main barrier to effective partnership between people and technologies is the people, not for any perverse reason but because it is not always clear at best that an individual has any incentive to use a technology. Further, I am not thinking of technologies here either as being the province of the professional or the person losing sight; the technologies used by both and the information specification, harvest and analysis should be under the joint control of both.

2. Handling Repetition

I want to begin this Section on "Handling repetition" with a personal story. When I was losing my sight in the back end of 1974 I thought I was functioning quite normally. I continued to select my clothes, go to work, eat in restaurants, cook and go shopping. The only changes in habit were that I gave up reading newspapers and watching television. However, quite by chance I saw a children's cartoon on the television while I was working in the BBC News Room and realised that I could not make head nor tail of it. Having thought about it carefully, I realised that my brain had been imposing a pattern on the familiar so that it seemed to me that I was seeing more than I was seeing; and that the randomness of the cartoon had demonstrated the limits of what I could do; six months before I could watch a standard television at about 1.5 metres but now I could not decode what was going on. Likewise I thought on consideration, I was all right with the places, people and clothes that I knew but not with novelty; I could see why I had abandoned newspapers and television watching and why I discussed food with the waiters in familiar restaurants but no longer consulted menus. I had developed a coping strategy; I was sub consciously in denial.

Now while I am not saying that this will happen to everyone I would be very surprised if it was not a major, common feature of sight loss. It is easy to coast along, thinking that things are not so bad, that some tasks might be more difficult, that some vistas are more hazy but that, in general, the situation is manageable. Certainly at the back end of 1974 I thought that it was. What I did not realise was that I was losing my sight very rapidly. Ultimately it took 22 months to go from very good close vision but poor distance vision to total blindness.

The first role of technology in these circumstances is to maintain, as far as possible, individual performance in the period of sight loss. We are familiar with the use of enlargement, extra light and contrast markings for people who are 'partially sighted', whether permanently or temporarily but in the latter case my main point is that we need to be much more inventive.

There is, of course, a critical balance to be struck: on the one hand, we want to maximise functionality for as long as possible but, on the other, we do not want to run excessive risk. Just as we have to persuade people with residual vision at some point that it is best for them and other road users that they stop driving cars, so we need to be careful that people in a situation of sight loss are kept safe and do not endanger others.

In considering the three basic factors, I think we are all clear enough about enlargement and variation in lighting but not about contrast. The key characteristic of digital data is that it is plastic and we are all very familiar with manipulation but I feel that in the area of contrast we are only really interested when we are using applications that manipulate digital photography or related activities; we need to use contrast, along with enlargement (or, for that matter, miniaturisation) and light intensity to keep the real, visual world alive. Related to this, we need to be much more alive to the possibilities of modular user interfaces which will allow us, for instance, to couple a large, portable screen with a small mobile telephone, bring the sound of a television into a remote controller or cable-free ear phones, allow the use of a large screen to 'blow up' an image or show a small part of it in great detail; indeed, one of my major complaints about the visual impairment sector is that it still seems to think that the use of ICT simply involves text handling and web accessibility.

I still remember two incidents when I was visiting a unit for visually impaired children in Kuala Lumpur in 1987: first, I saw a child with a magnifying glass trying to draw a diagram with a pencil in an exercise book and suggested that he might rather use art paper and a felt tipped pen; secondly, a child was struggling to make sense of a picture book using a black and white CCTV and I suggested instead that a teacher should photograph the book using a full colour video camera and allow the child to play back the pictures, stopping as appropriate. Today, of course, not only could we use DVD technology for the same purpose, we could also then radically alter the resolution and the contrast. Nonetheless, although the visual impairment sector is alive to the potential of computing, it is backward in its use of graphics and audio visual technologies in rehabilitation.

The first instance, of the exercise book, pencil and magnifier, points up the trade off between magnification and enlargement; and here we need to ask ourselves whether our traditional approach, depending on the relative flexibility of lens technology compared with analogue print technology has been thoughtlessly migrated into the era of plastic, digital information where the medium is more flexible than the magnifiers.

In most cases I am describing the handling of routine in a situation where the sight loss is gradual. Most user interfaces handling plastic data provide a fair degree of tolerance which allows certain routines to be continued with different settings; but some aspects of routine require the introduction of new technological practices; for example, PCs are more customisable than televisions.

Referring to the incident of the VCR, we normally think of introducing 'new kit' in relation to text but I want to suggest that the key technology for sight loss is the much more extended use of viewers, with or without the capacity to record pictures; we are familiar with the use of high intensity magnifiers to allow partially sighted people to read bus numbers at a distance or handle other forms of signage but we are not yet so comfortable with the thought that we could establish webcam networks feeding data to an appropriate user interface for a home maker or employee.

The routine tasks, however, which are most difficult to handle are those associated with movement; switching from good vision and hearing to poor vision and the same level of hearing to assess the movement of vehicles or the operation of machinery is potentially hazardous, not least given the functional variability I noted at the beginning of this presentation; technology can be used here to lessen certain risks:

First, there is no reason why we should not develop a hand-held device which calculates whether it is safe to cross a street on the basis of the distance and speed of in range vehicles;
Secondly, home makers and employees could use gloves with censors to warn them of an approach to moving machinery, although I have not yet solved the problem of what to do about the house cleaner who leaves sharp knives blade up in the cutlery drawer!;
Thirdly, we need to work on additional audio information to complement declining visual functionality. This is a somewhat complex area but if we continue along the lines of exploiting RFID technology we might find that we go a long way to reaching the provision of appropriate audio without pitching into overload.

And this raises a further point; it is bad enough suffering from sight loss without anybody making it worse than it is; the key here is to be absolutely objective and calm; if we are dealing with somebody who has lived a predominantly visual life, bombarding them with audio might be counter productive; and that thought leads me to the second section of my Presentation, on handling change.

Finally, however, I need to make an obvious technological point. Most digital technologies have the potential to react to user behaviour in such areas as:

Ranking frequency of use;
Adjusting for user interface handling; and
Identifying membership of communities of interest and practice.

As users become slower at handling information, default features which reduce searching and handling time become more important.

3. Handling Change.

I have always tried to bear in mind two golden rules in understanding history and social context; these are:

It was never as good as they say it was;
It will never be as bad as they say it will.

and it is the second one of these I wish to discuss now, taking into account what I said at the beginning about uncertainty being much worse than an unfavourable diagnosis.

The first key attribute of digital technologies in this context is that they are able to simulate, a property associated with airline pilot tuition and more recently with CAD and games, but not used so much to simulate different life situations. Earlier I talked about the epiphany of my own sight loss and a thought that stems from that is the use of simulation to allow people losing sight and those who live and work with them and professionals to understand what is going on. I have in mind the situation where a person does not know what they don't know; does not know, for example, that the ceiling they are looking at is not plain, flat and white but is highly ornamented; or does not know that the piece of ground that they are about to step onto is not even and smooth but is rough and possibly treacherous. At a more complex level, people need to know how little they can read facial expression and body and to develop new strategies.

A variation on this theme, which is better known because of the use of adapted glasses to mimic eye conditions, is the use of simulation to understand diminution of field or to map available field and to superimpose these maps onto landscapes and objects at various ranges. We might, for instance, determine that a person with a given acuity field map will be able to make good sense of a newspaper photograph of a mountain range viewed at 20cm but will not be able to make equal sense of the mountain range itself viewed from a distance of 2km. Simulation should also be used to show how a curtailed field reacts to moving objects. The benefit of these technologies is that they inform both the person losing sight and her peers and professional workers. It might also be used to extrapolate, although this is a somewhat hazardous proceeding and should only be attempted by a professional and even then, the prognosis should be cautious.

The second key area for technology in assisting people to handle a deterioration in their sight is enriching data by making it multi modal. I remember when I learned braille that I did so with only the hard copy in front of me, providing no context, while my sighted peers learned print with the assistance of pictures. One of the rather strange irrationalities of the visual impairment sector is that it still asks people "what is your favourite accessible medium?" which is rather like asking you what is your favourite mode for accessing television: do you want the picture, the sound or the view data (Ceefax). Until now the possibilities of multi modal accessibility have been confined to the digital image, text, audio and braille but the advent of Stereoscopic Lithographic Apparatus (SLA) or 'fast prototyping' technologies now raise the prospect of adding a new dimension to tactile graphics and model making which will probably prove to be more valuable than the use of haptic force feedback. We are also entering an age of high definition data transmission through enhanced broad band and HDTV when it will be possible to transmit unmixed audio so that up to 32 parallel tracks can be differentiated; and we will have much more scope both to alter scale and de-construct the layers of images. For visually impaired people this means allowing them to do with the image what hearing impaired people want to do with audio. Hearing impaired people want to get rid of background chat while they are watching a soap opera so that they can hear the main characters talking in low voices; so, equally, the person losing sight will want to adjust the richness of graphics so that they can grasp the essence. There is, of course, a cut-off point to simplification and I will come on to this in the next section but, in the meantime, we should note that it is much easier to simplify a complex digital image than to build from scratch, a principle not yet grasped by tactile image makers. All this having been said, the most important and the simplest measure is to promote the simultaneous use of text and audio.

The third attribute we need to consider is enabling people to exercise optimal control of their interaction with the environment because one of the key problems with sight loss is a feeling of powerlessness. This calls for a much more inventive use of navigational technology and robotics.

The combination of satellite and voluntary surveillance technologies is powerful. This issue is somewhat clouded by arguments about the ethics of surveillance which ignore the concept that this should be client or user led; but whereas the emphasis of discussions in the disability and elderly sectors has been on domestic voluntary surveillance to extend domestic autonomy and decrease hospital and care home occupancy, the application of these technologies to the challenges and opportunities of the travel and the strange environment offer a whole new vista. The key here is to resolve the current psychological and/or technical problems of incompatibility between technologies which have grown up for different reasons in different sectors. So, for example, the CCTV that is used by the security services to monitor public places is not used in a narrowed-down way to allow carers, family or friends to monitor individuals, nor can individuals choose to be 'passed on' from one public surveillance system to another; and, most simply of all, there is no connectivity at the moment for the private individual, although it exists for television outside broadcasting, between the viewing device or camera held by the traveller and the nominated monitoring person or organisation. Such measures are necessary because navigation technologies are currently so difficult that they are not useful for quick fixes. One recurrent theme is that the person undergoing a difficult adjustment process does not want to be embroiled in a massive technology-based learning process. We also need to think about using emerging technologies that transmit highly localised audio advertising to provide visually impaired people with highly localised audio information if they want it. Again, concluding with the simplest measure, we should promote the use of location-based technologies so that I can ask "Where am I?" and receive an immediate answer!

Turning to robotics, it is more than eight years since I concluded that the capacity of robotics had surpassed those of guide dogs. The explorer and feedback mechanisms of robots are a curious twilight zone, even though performance levels are remarkable; we seem to understand robots on the moon but not on our streets. We really must not allow our emotional attitude to animals to impede progress in this area. The essence of control is the right information at the right time in the right place and that means intelligent sorting. The greatest attribute of computing is pattern recognition which is the necessary precondition for sorting.

Finally, if people are to handle change effectively they need to be aware of the change in an objective way and that means using logging techniques to establish trends. It is my experience that when people are losing their sight they need to talk about it but instead of that talk simply being to anyone with whom they come into contact, talk should be structured and captured; apart from the emotional and psychological benefits, this will provide the kind of data that is currently used in health and medicine for diet, allergy susceptibility, drug effectiveness, dosage and compliance and symptom mapping. We need to design simple structures and tools for capturing and analysing key data so that the individual's sight loss is objectively understood. Going back to a principle in the Introduction, the use of technology and the information specified and gathered should all be joint professional/client concerns.

4. Facing the Future

There comes a point where gradual change becomes critical, when, for example, crawling round the carpet reading 32-point print becomes so impractical that the use of audio or braille has to be considered. The first key concept here is to promote a process rather than a point of choice. There is no point at which we should confront a person with the question: "Do you want to switch from 32-point print to audio, or to braille?" Instead, we should enable people losing their sight to operate in rich, multi media environments in every task where this is possible so that they can almost imperceptibly move from one combination of strategies to another:

A reader using extreme screen enlargement and audio might just find his hands dropping onto an active braille display;
A traveller using a location-based service might begin to refer back to a monitoring system;
A learner might want to switch from linear broadcasting to an on demand service which provides additional resources and flexibility of use. As I said at the beginning, my brain played a trick but I caught it out; allowing people to switch within a combination of strategies might make transitions more natural, less acute, and may allow the brain to re-write history which is one of its most important functions.

Secondly, digital technologies are particularly well suited to gradualist approaches because of their capacity both to stretch and to merge possibilities. Whereas the analogue world, for example, really did pose the question of print, braille or audio, there is no such radical trichotomy in the digital world. There was, too, in the analogue world a radical split between the geographic presence and absence of the professional worker so that, for example, you were either learning orientation and mobility with an instructor or sitting at home. Now we can undertake some of that learning using remote monitoring in which the instructor can see what we are doing and we can ask for and hear advice.

Thirdly, and at an immensely practical level, we can cosmetise assistive hardware so that it is peer acceptable. When I was in India recently to ask teenagers about the design of talking book players, the girls said it needed to be pink and fit in a handbag. One of the main reasons why people going blind are so reluctant to switch strategies is because they quite rightly believe that this sets them apart when they are entitled to maintain that the assistance they receive should better enable them to maintain their social position through pursuing peer normative activities; and that means maintaining their position in their same peer groups instead of being exiled to a visual impairment peer group.

Finally, and this is to make an old point in a new way, there is nothing virtuous in difficulty or complexity. In the analogue world we made devices which were 100% suitable for narrow purposes at a high cost; today we can use systems which are 95% satisfactory, which are highly adaptive and cheap. The sector has spent a small fortune on high cost, low volume assistive technology and hardly anything on modifying and integrating mainstream technologies. Which leads naturally to my four concluding general points which relate to the whole rehabilitation and technology picture.

5. Conclusion

First, the analogue world dictated certain kinds of controls and hierarchies between professionals and clients but the digital environment is much more forgiving, flexible and collaborative. Adjusting to sight loss should be a much less professional- and a much more peer oriented process. For all the ideological talk about abandoning the 'medical model' of disability, the worst offenders are professional rehabilitation workers whose relationships with clients closely resemble those between patients and General Practitioners; we see them one-to-one and alone, almost in secret. Digital technologies will allow us to see the adjustment to sight loss as a much more 'democratic' process where professionals are virtually or actually alongside people on their journey, with a much less emphatic cleavage between adjustment and stasis. On the basis of public and third sector financial projections over the next five years, We cannot afford intensive, periodic one-to-one training delivered by professionals, even if we think it is desirable. Some will see technology as a destroyer of face-to-face professionalism but what it will allow us to do is to switch from limited training to mass facilitation.

Secondly, and this point has been made repeatedly, there is enough technology to assist us with most of our problems but it is not integrated in the right way. If we spent more time, energy and money integrating rather than thinking up clever new, specialised and expensive assistive technologies, we would all be better off.

Thirdly, it is dangerous to confuse the strategies of the congenitally blind technophile with the adventitiously blind normative PC and mobile telephone user; and it is equally dangerous to confuse the congenitally blind school learner with the adventitiously blind informal learner.

Fourthly, neither the introvert technician nor the rehabilitation worker who rather limply boasts that he "doesn't really know very much about technology" is good enough. We have to consider a process whereby the dynamics of a triangular relationship between the person losing sight and the rehabilitation and ICT functions changes as peer normative performance becomes more problematic and where in almost all cases a user led process slowly metamorphoses into a professional-led process.

Finally, and I have left the most obvious point to the last, if we combine the customisation of technologies and their parallel and integrated use with the customisation of the dynamics of their exploitation, old, static models of dealing with sight loss should be rendered obsolete, allowing us to think about how to maintain peer normative performance in a period of sight loss; but the transition is going to need a greater spirit of adventure than we have so far witnessed.