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Losing your sight means a massive loss of information because it becomes inaccessible. This is not just because you can't see to read, it is also because the way we interact with blind and partially sighted people increases inaccessibility.
To get information in large print, braille or on tape you normally have to go to a specialist voluntary sector organisation rather than use the "mainstream" channel. You can't just pick up a book or leaflet, you have to make special arrangements and put in special effort. There is no question of just sauntering into a bookshop or library and impulse shopping for leisure or information material. Everything has to be specifically organised in advance and usually patiently awaited through the post.
No wonder most people with sight loss progressively give up trying to get information and gradually withdraw into themselves, relying on a few personal intermediaries and one or two organisations to meet their reading needs.
On the other hand, increasing numbers of statutory, voluntary and even business sector organisations are putting effort into making material available in "accessible formats" and are often being frustrated by the apparent absence of demand and interest. You can hear stories of hundreds of unwanted copies of a braille document rotting away in a warehouse somewhere because nobody wants to read them.
This paradoxical situation seems almost impossible to believe but it is real. Although the volume of output of accessible format materials has gone up significantly in recent years actual consumption remains low, is declining in some key areas and yet anecdotal evidence is strong that most blind and partially sighted people are still indicating lack of access to information as one of their greatest frustrations.
This paper focuses on people - their emotional and practical support needs. It highlights soft issues that need to be addressed as well as the practical product, service and infrastructure changes which need to be put in place. It concludes that there is no quick fix answer; it isn't simply a question of new technology, shifting responsibilities or the Government providing more money or, even worse, more coins in the charity box.
We say that a person with normal sighted has 20/20 vision. This means that s/he can see at a distance of 20 metres what s/he is supposed to see at a distance of 20 metres. We then define all levels of sight as normal until we get to a ratio of 6/60 metres, at which point someone can be classed as partially sighted. The next barrier comes at a ratio of 3/60 when the label "blind" can legally be applied.
These definitions are those used in the UK. There are minor variations in some other countries but in this context they are not significant. The definitions do recognise that a lot of work requiring vision - such as reading - does happen at a distance of 3 metres or less. The demography of visual impairment is similar throughout the developed world. This means that sight loss is predominantly a function of ageing. 90% of those who can be classed officially as visually impaired are over retirement age. 80% of those of working age are out of work - not because they don't want to or cannot work, but primarily because employers have a set of assumptions about them that would indicate that there would be serious problems in offering them a job.
Given the range of sight conditions encompassed by the medical definitions, it is perhaps not surprising to learn that in fact only 14% of blind people actually have no sight. However, blindness is often only one disabling factor for an individual. Increasingly children with severe multiple disabilities are surviving into adult life and for elderly people, hearing impairment and conditions such as arthritis and incontinence also play their part in how an individual lives.
So if we look at the group we so readily accept as appropriately labelled "visually impaired people" we can see immediately that the label is pretty meaningless. Instead of a homogeneous mass known as "the blind", we find a diversity of people with hugely different backgrounds, experience, skills and personalities - as diverse as the general population in fact.
The only linking factor is an inability. When you think about it, it's very strange to think of people as a coherent group when the only thing they have in common is a huge range of levels of difficulty performing various functional tasks, which are caused by a range of medical conditions interacting with different personalities, lifestyles, aspirations, expectations and contexts.
At one extreme we have people born totally without sight and increasingly with other disabilities. At the other, and far more numerous, are people who in their 70's, are having difficulty recognising a friend across the room. In other words, it will make no sense at all for any of us to count the numbers of blind and partially sighted people as defined by registration criteria and try to address their needs through a single "disability" or "special needs" department.
In very broad terms, however, we can usefully think of two groups of people at least as far as the attitude to their own visual impairment is concerned. Sight loss is an intensely personal and almost wholly negative experience. It's not something people would ever choose, nor are they ever likely to band together in "glad to be blind" rallies. Blindness may "say more about you than cash ever can" but what it says is pretty unpalatable. I stress this because it is important to recognise that it will always be the minority of people with a visual impairment who have sufficiently come to terms with their disability to allow them to be "out of the closet".
Most people with a sight loss will try to avoid having to acknowledge it publicly unless they have no choice. This can mean that, as sight deteriorates, people increasingly take refuge in their homes and in themselves and interact less and less often with others, particularly in formal and "official" circumstances. For example, people will stop going to the library rather than face the embarrassment of having to admit they are having difficulty in browsing along the shelves.
In providing services, therefore, it is crucially important that people should not have to cross the hidden divide between the places that "normal" people go to and the special places "for the blind". The important thing is to try to make sure that people are treated as individuals and that, as such, they are "included" inside. I say inclusion rather than integration because integration implies the creation of special support within the standard environment, and inclusion implies modification of the standard environment itself. In other words it isn't a case of allowing disabled people to come to your party, but making sure that we can all go to the same party.
Of course the minority of people who acknowledge their visual impairment have got used to there being different channels of customer contact and special separate rooms within libraries where blind people go. No doubt local authorities are beginning to realise that these facilities always seem to be sadly under used, compared with the estimates they have of the number of people in the area with a serious sight problem. Well, perhaps now we know why. If you put a sign up saying "boring, old, fat people come this way" the chances are that most of the people you would recognise as falling into the category would manage somehow to decide they didn't. So, open up the special rooms and segregated equipment, take off the negative labels and try to create an environment where people's needs are responded to on an individual human basis. So, if all somebody needs is for the print on forms or the current size of screens to be a little bit bigger than normal, then that is what they get, not a whole package of things that they will never need or use.
If we accept that there is not a magical moment when you wake up re-born as a blind or partially-sighted person; that loss of vision does not bring changed needs, but just an additional layer of need (often just in terms of delivery medium); and that what people are likely to want is as little emphasis as possible on an aspect of their life about which they are not madly happy, then the vision is crystal clear and the role of the library straightforward.
The vision is of anyone, regardless of degree of sight-loss, being able to interact with the library (in person, by phone, by intermediary or by Internet) throughout their lives. If the information required is not readily available in the preferred format on the local shelf then it is only an inter-lending request away. In other words, just do for alternative formats what we accept for standard print. Using audio books could then become more a matter of personal choice than a reluctantly taken step along a painful road of increasing disability.
My argument is that by making blindness and partial sight the realm of the specialist and focussing on "special needs", we have created and reinforced a false distinction and generated unnecessary complexity in service delivery. We have added cost in excess of value and, worst, put most of our potential clients off coming forward for services.
We have to stop thinking of blindness as something that radically alters someone's personality and start to view it as an unpleasant, sometimes distressing but mostly frustrating practical obstacle. We have, for example to link visual impairment and ageing much more closely in our minds, so that when we think of service provision for elderly people we automatically remember that many of them - 1 in 7, 80 year old people - will have some form of difficulty negotiating libraries and their contents.
The development of a national union catalogue of alternative formats (NUCAF) has given us some valuable learning and experience that may be useful to share through a brief discussion of our approach, methodology and outcomes.
There are presently 66,000 titles catalogued on NUCAF from a large number of contributors including RNIB holdings.
RNIB catalogues titles to UKMARC standard, classified according to Dewey Decimal Classification - Edition 21. Records are also subject-indexed in-house using chain-indexing techniques.
Most libraries record details related to the physical description of an item in MARC field 300 (Physical Description); this field is not used by RNIB. There are various reasons for this, some media and some system related.
We do not record physical details about the print document as once the title has been produced in alternative format(s), the print document is not retained.
The RNIB Bibliographic database is diverse in its nature - it not only supports the traditional enquiry and circulation role; it supports report and bibliography production and is an integral part of the sales and order processing system. Much of the title media specific information 'feeds' into the sales order processing system and therefore needs to be held in an interactive field on the system not in a 'static' data field.
On the Bibliographic database each title is catalogued as a print work, i.e. we do not catalogue 'the format'. Media screens are linked to the title record. A media indicator at title level indicates the availability of alternative formats prompting the user to access the media screen of their preferred medium. Each media screen contains further information about:
Our customers need us to provide as much information as possible about the alternative format version of a title. For example, which format is the tape in (2 track or 4 track, Clarke and Smith Talking Book format)? Does the customer/user require specialist equipment to be able to use the item? How many volumes is a braille item? What is the purchase price? This and other information is important to the customer.
Standard bibliographic searches are possible on the system - author, title, publisher, date, ISBN etc. In addition (by way of bypassing the use of 300 field at present) we enhance the searches to include media specific criteria.
In addition to RNIB holdings, we hold details of more than 150 contributors who hold titles in alternative formats which we can refer customers to - by having their details on sub-screens we can select/deselect for reports, catalogue production, etc as required - this would not be possible if source data was included within the MARC entry.
The use of separate media screens also enable media-specific copyright information to be recorded for legal and information retrieval purposes.
In summary, the media specific detail required in order to search for information and process subsequent 'finds' for sale, loan or referral means that a purpose-built interactive system is required in order to meet our customer and related in-house needs. In order to achieve this we effectively bypass the proposed MARC field 300 expanding it to separate, tailor-made media screens.
Any item may be recorded in one or more of six main media: Braille, cassette, talking book (UK), Moon (tactile code based on letter shapes rather than dots), large print and electronic disk. Each of these has sub-formats which are critical in determining whether any given reader can use an item.
In some cases the number of format variables is enormous - for example the different plain text and word processing formats, point size and fonts for large print. Of course, to some extent users can convert readily from one format to another but if text has used graphics, tables and physical layout to convey meaning, radical change to font and type size can render a document much less accessible than its author intended. While HTML and XML are often thought to be able to eradicate such transcription problems because they encode the structure and internal relationships of a document as well as its text content, there are issues that cannot be treated automatically. For example, the eye's ability to scan a wide area such as a whole page and then home in on selected data and see the relationship between them, cannot be conveyed adequately in any other medium or format.
Additionally, a print original document may be converted into accessible media by a combination of media - for example the text of a report on cassette with the detailed financial statements in Braille or large print for closer study. All this can complicate cataloguing. More crucially, however, the National Union Catalogue of Alternative Formats has more jobs to do than the standard union catalogue.
It is, of course, a compilation and integration of contributing library book and document catalogues. It also has to store records of a wider range of items - such as knitting patterns, leaflets, instruction books for domestic appliances, maps, diagrams and references to organisations who provide items in accessible media. Of course, such items could be stored separately but that would only serve to make searching and information retrieval more difficult and time consuming. An essential ingredient of achieving the vision is that information finding is made as uncomplicated as possible so there are no excuses about lack of time and resources for libraries to support the information needs of their blind customers. An enquiry about a specific gardening or cookery book may in fact, be a request for much wider information on the subject. While libraries would not normally get involved in cataloguing magazines a blind customer has nowhere else to go to find out if there are titles available. This makes the potential role of the library and consequently its catalogue and information systems, much wider and more diverse than it would standardly be.
It is also important to bring as much information together in one place so that the user can gain maximum benefit from the inevitably restricted choice of items in alternative media. It may be, for example, that there are only one or two books available in a specific medium and subject and therefore knowing about short documents, articles, leaflets and other sources of information may be essential.
For a blind person currently there is no easily accessible substitute for the bookshop, newsagent or information/leaflet display in the post office, Citizen Advice Bureau, tourist information or doctors waiting room. Thus people have to rely on the voluntary sector organisations and libraries as the only channels who would potentially see it as part of their job to deal with such information needs.
It is odd in fact then, that despite assertions generally that voluntary sector organisations do not compete and indeed co-operate in a way not possible in the commercial sector, that, in the UK only RNIB gives people specific information about the full range of literature products available. Others will claim either that their "customers" are only interested in what that organisation provides or that something in their charter or some force on their board of trustees prevents them from being more helpful. In other countries the pattern varies but I am not aware of anywhere other than NUCAF where you will find an attempt to bring together all kinds of information regardless of format, medium, category or content.
The idea that blind customers will only want to form a relationship with one provider and are not interested in anything else is very wide spread and deeply embedded in the collective psyche. But it is so clearly nonsense that it is hard to understand why it has stayed so strong. It is however, closely linked to the general notions of blind people as a distinct group in society which we explored earlier. We have developed a stereotype of an active, young, energetic blind person who can scale Everest with a guide dog tucked under his arm and has almost magical mental powers, which allow him immediately to recognise someone he met for five minutes ten years ago on a bus. At the opposite end there is the elderly lady who has had all faculties surgically removed and enjoys nothing so much as sitting in an armchair and listening to an exclusive diet of romantic fiction.
Bringing catalogues together is only one small part of what needs to be done to let us provide seamlessly for the needs of the individual. But creating the catalogues is more complicated than one might expect in a conventional library context. Not only will the range of types of document and formats be wider, but the organisation holding them will not necessarily be a library.
For example, many of the texts used by students at UK schools and colleges are produced and held by individual schools and also in prisons whose inmates while away the long years by learning and producing Braille. Neither schools nor prisons are set up with an infrastructure to support an inter-lending, selling or distribution operation. In fact, reassuringly, it is quite difficult to get anything out of a prison.
This means that for a union catalogue to be effective it is essential to invest time in ensuring that the organisations contributing items will be able to respond to requests when they come. This requires more thought and effort than just adopting existing inter-lending protocols and systems. One obvious issue is that often only a master version will be stored requiring every copy requested to be printed or duplicated on demand. This will generate materials and labour costs which a borrower (organisation or individual) would not wish to, or probably would not be able to meet.
Even if the transaction is a sales one, it is unlikely that the price a customer might consider reasonable for a copy of a school textbook would equate to the incremental costs of making the copy.
While there is no ready solution to this issue which can be applied nationally, the alternative courses of action would be to tell the customer that they simply cannot have a book (even though considerable effort will already have been expended in its creation) or, as has sometimes happened, for another organisation to transcribe the book again. Although this is ultimately much more expensive, time consuming and wasteful, it may be able to be accomplished without anyone having to sign an invoice against a specific budget which cannot support the expenditure of the cost of the copy.
Another, more subtle stumbling block lies in the fact that organisations for the blind and many blind people are used to the status quo. They have grown up with the idea that blind people must transact directly with specialist organisations because nobody else understands them properly and, in any case, organisations such as public libraries are in reality just "intermediaries" - organisations who come between the end user and the service provider. This is odd. I am not sure that a publisher would regard a library or bookshop as an "intermediary" - as far as meeting the needs of the reader are concerned, the focus of attention is on the transaction between the individual and the shop or library with a range of publishers, printers and distributors operating in the background.
Because there is no provision through newsagents and bookshops, the union catalogue has to attempt to cover these areas as well. This is where issues of classification and organisation can be important. The way a bookshop may group items will by no means always mirror how a library classification would work. In the context of there being bookshops, libraries, shelves, shop windows, catalogues, fliers and advertisements this doesn't matter. However, if many of these mechanisms are missing, there is more work for the union catalogue to try to do. It is no use to the reader to try to keep the catalogue pure and argue that it is not the job of a union catalogue to do anything other than provide standard searches - if contexts change then so should the way systems operate.
One major area of unmet need is how to replicate the process of browsing. Research tells us that the majority of people who enter a library or bookshop do not know precisely what they are looking for. Usually, the union catalogue would only be approached once the need had been identified in greater detail allowing specific searches to be run. However if there are no shelves to browse, no window displays to attract the attention, the blind reader will have always to start from the point of having a specific item or subject to enquire about. Imagine going into a library or bookshop, approaching the counter and asking for a run down on everything they'd got starting at a headline level and then focussing on specifics, dipping in and out, going to and fro and eventually, like a fly, settling on a particularly attractive morsel. I can imagine the waves of fear and cries of "lack of resources" welling up in librarians and booksellers.
Browsing of course is not only about the intellectual content of a book, it is also about look and feel, size, use of graphics, style and empathy with the author. Again, this is given an extra twist in the accessible media world not only by appropriateness of the medium itself (is the print large enough, is the Braille flattened with age and so on (but also with factors such as the artistic performance of an audio recording. Does the narrator capture the mood and character of a novel? Would Sherlock Holmes really sound like that? Is the characterisation under or over-played?
Given this kind of need, it is fascinating how few libraries readily offer any kind of help with browsing or, for example, offer a cassette recorder near the audio books to allow patrons to try before they buy.
On the other hand, I have painted a picture which makes everything much simpler than we thought it was and showed, perhaps, how we already have all the potential and most of the facilities and capabilities we need to make a dramatic leap forward. Its just a case of re-aligning some key elements.
Blind people are not another species - the longer we all live the greater our own chance of being one of them. So we don't need to do lots of complex research into what they are like and what they need from libraries and bookshops - we already know because its the same as everyone else.
If the statutory and voluntary sectors actually pool resources and learn mutual respect, to the extent where they can share responsibility for customers with a serious sight problem rather than batting it around as an unwanted drain on budgets and expertise, then we can achieve much more without spending any extra cash.
If we can get the National Union Catalogue out into the mainstream and treat interlending of braille and audio the same way we already treat print, then many more people will get access to what they want to read.