Monday 6 July 2009

It’s often said that “The Law is an Ass” and nothing could be truer based on recent changes in legislation that potentially effect hundreds of thousands of disabled people, and those with mobility problems. I’m referring of course to the decision to change the tax arrangements for mobility scooters – the battery-powered chairs that you often see elderly and disabled people using to go along the pavement or round supermarkets – and class them as ordinary vehicles, in the same league as expensive cars and event F1 Grand Prix cars. Someone in Governemnt has obviously little or no sense, as there is a world of difference between a petrol-powered car with a top speed of hundreds of miles per hour, and a range of several hundred miles, and an electric scooter with a top speed of around 6 miles per hour, and enough battery power to get you to the shops and back!

I never cease to wonder at the lack of common sense amongst those governing this country, and the lip service that is paid to the needs of disabled people. All sorts of rights are enshrined in legislation, and even though government departments trumpet their commitment to equality of opportunity and access for all, the reality is very different. I can think of many visits to JobCentre Plus offices, where access has been via flights of stairs and where doorways have been too narrow for a wheelchair to pass through, or where there is insufficient seating for elderly and sick people to rest, let alone space for a mobility scooter!

Fortunately, Elizabeth Finn Care seems to have come to the rescue! With some high level support from people such as Professor Stephen Hawking there has been a well-publicised campaign to reverse these taxation changes for mobility scooters, so let’s hope that a victory is on the cards. It seems an obscenity to slap taxes on low-powered scooters that can make the difference between a disabled person being trapped in their home, or having a bit of freedom to go shopping, visit friends down the road, or simply get some fresh air… The things that able-bodied people, especially Government Ministers and civil servants, take for granted!

Like millions of other people I have been enjoying the thrills of Wimbledon over the past week or so, and was full of excitement as the prospect of Andy Murray making it to the Men’s finals drew nearer. Sadly this was not to be, but the men’s final turned out to be spell-binding, with epithets such as “epic” and “monumental” being bandied around by the commentators. It’s at times like this that I have cause to be thankful for the delights of BBC Radio 5 Live, who provided magnificent coverage and superb entertainment. Since losing my sight a couple of years ago I’ve really come to appreciate the joys of radio sports coverage, as obviously TV commentators assume that everyone can see what is happening. As is often said, radio has the best pictures!

I’m not knocking the consummate skill and artistry of Roger Federer or the Williams sisters, but wouldn’t it be nice to have a bit of a change next year and see some fresh new faces? But I guess that is as likely as Manchester United and Chelsea not being at the top of the Premier League!

Alex Scott

Monday 2 March

I’ve just returned from a fascinating weekend away in Weston super mare, attending a conference called: “Finding your feet”, organised by the RNIB. This was a chance for people - like me - who are dealing with sight loss to come to terms with all the emotions connected with losing vision, adapting to the challenges that this brings, finding sources of support, and making sure that all the statutory obligations of Central and Local Government were being fulfilled.

And so it was that a motley collection of us assembled by the seaside to explore some of these challenges. The majority of people were over retirement age; however, a number of us were still of working-age. Sadly, we all had to stop working because of the onset of severe vision impairment. As a group, the causes of sight loss were varied: in some cases this had taken place gradually over a period of time, in a couple of cases onset had been very rapid, and in one case sight loss occurred overnight due to surgical complications. What we all shared, however, was the sense of grief and loss: the difficulty of accepting that we had to live with a disability, the complexities of navigating oneself around “the system”, and how varied support was from one part of the country to another.

One of the more interesting things I found was that provision of services was very much a “postcode lottery”; some NHS Trusts and local authorities were exemplary in the care and treatment that they provided, others far less so. It was good to discover that services within my own part of London (Lambeth) and the care provided by the local St Thomas’s Hospital, were well above average. It was also good to learn that I had been well looked after in respect of referral to the Low Vision Clinic at my local hospital, where the NHS provides a range of somewhat basic magnifiers and optical devices to help with some day-to-day living needs. It was also apparent that - although I had had to wait a long time to see her - the local authority rehabilitation worker had been good in her provision of some basic aids, such as my white stick, and in training to help me get around outdoors in my area. Some of the other participants had been less fortunate and it appeared they had received the bare minimum.

Many of us shared a common experience in that eye consultants were often a little bit reluctant to register patients as either blind or partially sighted; RNIB staff confirmed this. We put it down to the fact that doctors in this field were often unwilling to acknowledge that they had done everything they could to stop sight loss - and even more to restore vision that had already been lost. But registration is the passport to many services, for example, the local authority has a statutory obligation to provide an element of care for a person and to carry out a needs assessment, as well as being able to access specialist transport schemes.

The benefits of registration go far wider and, for example, open the door to some of the following:

• Eligibility for free or subsidised local public transport. In London, this takes the form of a Freedom Pass for use on all buses, tubes, trams and trains in the Greater London area
• Eligibility in London and some other local authority areas for the Taxicard scheme, which provides a number of subsidised taxi journeys each month
• Eligibility for a Blue Badge disabled parking permit
• Eligibility for a Disabled Person’s Railcard
• Eligibility for all sorts of discounted admission to cinemas, theatres, sports and concert venues

And there are financial benefits too. Registration as a blind person gives:

• Automatic entitlement to Disability Living Allowance (at lower rate mobility and care components)
• The Blind Person’s Tax Allowance
• Entitlement to working tax credits
• A statutory obligation for the local authority to reclassify your main residence to the next Council Tax band down from what it originally was

As is often the case with conferences and workshops, discussions with other participants and speakers can sometimes be more useful than the formal sessions themselves. It’s also a good means of networking and finding out about other sources of help, information and advice. Some of the workshop leaders were very inspiring in their examples of how they had come to live with their visual disability, and were now leading fulfilled and contented professional lives. I also learnt about “Sight Village”, a three-day event that takes place in Birmingham every July, where all the latest technology and gadgets designed for the visually impaired market are on display, as well as displays by organisations who might be able to provide assistance towards specialist aids.

So, all in all, a really useful weekend for anyone dealing with sight loss; a good way of getting some support at a difficult time; and, a valuable source of information and advice.

Monday 23 February

One of the big disadvantages of sight-loss is that ordinary little things can become very complicated and things that sighted people take for granted become riddled with difficulties and pitfalls. It’s quite remarkable how some organisations and institutions can be very helpful and others less so, often based on ignorance and a failure to think about the needs of all the people who use their services.

Some examples:

I recently visited a different branch of Tesco from the one that I normally shop at - a branch in Regent Street, just a few metres from Piccadilly Circus - presumably therefore, one of their flagship stores. All went well until I tried to pay for my purchases with my debit card and came up against their chip and pin technology. Somebody had thoughtfully secured all the keypads to their metal holders so that they could not be removed, thus making it impossible for me to use, as in order to see the numbers that I am keying in I need to have my face really close to the keypad. In most places, these keypads are on a piece of curly cable so that you can remove them from the holder and use them; however, in this store not only were they secured to the holders, but the holders were incredibly badly positioned so that there were major obstructions in the way: at the checkout, every time I tried to get my head close to the holder and the keypad, I ended up banging myself against the Perspex screen separating customers from the till itself!

The manager had to be called and we traipsed round the store trying to find a chip and pin machine that I could use. Both devices at the customer service desk had been screwed to the counter; the first one was also inaccessible because of an ice cream freezer that had been thoughtfully (!) positioned there. The second was clutter free, but of course had I been a wheelchair user it would have been impossible to use. So the upshot of this is that with the help of the Equalities Commission, I shall be taking action against Tesco under the Disability Discrimination Act. It’s one of those little things that they could so easily fix and just do not think about.

Another instance was on a recent train journey from London Paddington to Weston Super Mare, in order to attend a conference on sight loss - of which more about at a later date. At Paddington, the assisted service for people with disabilities worked really well. After reporting in to the Service Centre at platform 1, I was soon escorted by a friendly and helpful member of staff, put on a buggy, and driven across the station - to the accompaniment of flashing lights and a beeping noise - to the platform from where my train was leaving. Furthermore, I was driven to the correct carriage and escorted to my pre-booked seat. And at the other end of the journey, station staff was there to greet me and help me to a waiting taxi.

The big problem on this journey was the quality of announcements – or lack of them! From London as far as Bristol, there were plenty of them; clear and informative, passengers were left in no doubt as to the stations they were approaching and where to get off. However, after Bristol there was a change of crew, and the announcements seemed to disappear. For several station stops I was left wondering whether it was soon time to get off. It was only by checking the time that I knew roughly when it was time to get off because of the timetable. So again, it was a case of alerting Great Western trains to this problem and making them realise how important those announcements were for customers to know where they were and where to get off!

Simple and small things yes - but easily fixed and major inconveniences when your life is impeded by sight loss!

Monday 16 February

I often wonder what a visitor from another planet would make of life in modern day Britain and London, if they suddenly arrived here and had to draw conclusions from some of the detritus and abandoned media that they would find.

For example, if they were to judge diet and culinary habits based solely on the leaflets that come through my front door, they would assume that people live on a diet consisting specifically of delivered pizza - in a wide variety of flavours and special stuffed crusts - and free bottles of cola. They might also conclude that on special occasions the inhabitants of London - when not eating pizza - feasted themselves on a variety of take-away Thai food and perhaps occasionally Chinese. Thus, visitors would conclude that the inhabitants of London clearly did very little cooking, relying instead on a fleet of delivery vans and motorcycles scurrying round the nation’s capital, bringing hot food at all times of day and night. They would also think that many more people than actually do so live behind our communal front door, given the vast quantities of leaflets that cascade through the letterbox on a regular basis.

Even stranger conclusions might be drawn if these visitors based their understanding of the British on recent headlines in the tabloid press. These days, the hoys of reading physical copies of The Sun, Daily Mirror, and Daily Mail are but a distant memory (thankfully, in the case of the latter, with its “little England” views), but I am still familiar with what they are saying through the reviews that I hear on the radio.

Two stories dominating the tabloids caught my eye, metaphorically speaking. Firstly, the nation reeled with moral indignation recently when a 13-year-old boy was pictured with his 15-year-old girlfriend, pleased as punch over the birth of their new baby. Both parents looked young and apprehensive - despite their radiant happiness - but it was the youthful father who received most of the attention with accusations that he was barely out of primary school and that he was just “too young”.

Now I suspect our interplanetary visitors would have been a trifle confused. Why, they might have mused, was there this enormous fuss when clearly both parents were physically mature enough to go through the process of reproduction and birth? Why was society fixed on an arbitrary age at which young people suddenly became regarded as suitable for having children and engaging in sexual activity? And if blessed with the gift of time travel as well, our interplanetary visitors would have found great variations in what was regarded as an “appropriate age” from century to century, country to country, and civilisation to civilisation. Here is probably not the place for a discussion as to the appropriate age to which a young person becomes both physically and emotionally mature enough to engage in sex and the act of reproduction, but I do think that an observer from another planet would be astonished at the furore that this case provoked.

The other story that kept popping up was that of the unfortunate Jade Goody, and her losing battle with cancer. Leaving aside the fact that the news coverage is being manipulated by Max Clifford, and that she unashamedly is trying to make as much money as possible in order to provide for her children after her death, the curiosity is why this woman should apparently have captivated the nation’s hearts!

This is another of those stories where a visitor from another planet would be nonplussed. The extent of the coverage would suggest that Jade Goody was a great national figure - perhaps someone who has served as a leader or has been a huge inspiration to the nation - or through public service, has won an affectionate place in people’s hearts in the same way that Diana, Princess of Wales became the “people’s princess”. But no. Jade’s great claim to success is having been a contestant in Big Brother and having become notorious for her bigoted and racist views, her colourful choice of language, and being the archetypal Essex girl who had managed to achieve notoriety as a C list celebrity.

So another case where those observers from another planet would be left scratching their heads, as am I, wondering what it is that makes Jade Goody’s terminal illness something of a national tragedy!

Monday 9 February

It seems to have been a splendid night on both sides of the Atlantic for those involved in the creative industries. News from the Grammy in the USA is that British bands - particularly the excellent Coldplay, much loved by the younger middle-aged and middle-class Brits like myself - have won awards along with a host of other UK artists.

Even better news in the BAFTAs, where British films and performers do strongly - especially the much-lauded “Slum Dog Millionaire”, which gained the best film award and hopefully will also do well at the Oscars in Los Angels next week.

For those who have not seen Slum Dog, it’s a must see as it is a truly remarkable piece of cinematography, lovingly shot by British Director, Danny Boyle and using a whole host of British and Indian talent. It has deservedly been doing excellently at the box office. Once again, it shows how relatively low budget British films can be world-beaters and how proud all of us should be at the work of Film Four in making sure that such movies are made and seen on the big screen.

So why is it that I can both praise the film, recommend that friends and acquaintances see it but at the same time remain unsatisfied by it? The answer comes down to the old phrase that: “Radio has the best pictures”. I first came across Slum Dog in its original dramatization for radio as: “Q and A!” - a broadcast a year or so back on Radio 4. Recently, the original dramatization was re-transmitted in the run-up to Slum Dog being released.

The radio adaptation vividly and faithfully transported listeners through the stories evoked by the original book into the sights and sounds of Mumbai and other parts of India, using authentic sounds and actors to bring this exciting story to life. Day by day over a two-week period, I would settle down with the radio for the next, literally, thrilling installment of the story, awaiting eagerly the final dénouement – and listening raptly as the tale reached climax after climax.

And so it was, in my mind’s eye at least, I had a very clear image of how the story would unfold, as well as the look, feel and sound of the characters. And so it seems, like every other screen adaptation of books - either well known of not - even the most skillful director cannot recreate what is in the minds of other readers and listeners! Some are better than others, as I think with pleasure at BBC adaptations of Jane Austen, and cringe at contemporaneous film adaptations! And when it comes to Shakespeare …!

So it comes down to that old conundrum as to whether cinema can faithfully transform a boom or play into a successful screen version. In the case of Slum Dog Millionaire, I have to say yes, even though the movie’s pictures and sounds are rather different from the ones initially cast in my mind, and if truth be told, they will remain the best pictures.

Monday 2 February

Last week’s edition of In Touch on BBC Radio 4 asked its audience at the end of the programme whether they wanted to hear more about scientific research and development of cures to blindness or not. I was intrigued by this, as it seemed utterly impossible to me to comprehend that anyone should want to retain his or her disability. It turns out that there are those who been blind from birth and have never known what it is like to be sighted who are not interested in such developments. This struck me as very strange – rather like members of the deaf community who would rather have a deaf child than a hearing one. So, I fired off an irritable letter to the BBC, which resulted in it being read out with suitable acknowledgement of my points about the existence of a two-tier blind community: those who are relatively young like me and who have recently lost sight, and those who had been blind from birth, or were very old, and did not want to undergo the hassles of operations and all the clinical procedures.

It does seem incredible to me that people should not wish to have a sense restored - that most people just take for granted - and raises some of the spookier aspects of disability politics. Apart from the allusion to deafness, I have also come across instances of parents with profound physical disabilities who would rather not test their unborn children and would prefer them to undergo lives of potential pain, misery and discomfort. It does beg the question of quality of life and how much, given medical progress, should be done to keep people alive who in earlier generations who not have survived childhood or infancy.

Like millions of others, I woke up on Monday morning to a world of whiteness and cold. Like others, I initially greeted the collapse of our public transport system in London and the South East with disbelief and incredulity as the capital city of one of the world’s most developed nations ground to a halt!! As Boris [Johnson] admitted on the news on Monday evening, it had not been TFL’s finest hour, and although it had been the right sort of snow there had just been too much of it!

A Russian friend of mine phoned me up in great glee as the chaos that had bestruck London has been a major item on the Russian TV news. He and various friends had been falling about with laughter at the effects of 10cm of snow in London and temperatures of -2/-3 degrees taking such a massive toll, whilst they were carrying on life as usual with temperatures of -20 and snow a metre high! A Midlands-based friend told me how he had driven home from Sweden last Sunday as the snow began to fall in Britain, and how on the other side of the Channel graters and snow-ploughs were out in force, however, and as soon as he hit the English motorway network his journey got slower and slower.

It’s a difficult one to call. Should a major country have the fleets of snowploughs standing by and vast reserves of grit and salt ready for the rare occasions when snow does fall in England, and fall badly? Or should we shrug our shoulders and realise that such events only take place every few years and that the economics of such planning may be more than we can afford? Either way, it is embarrassing when other European countries seem to carry on life as usual after a bit of snow and the UK grinds, shuddering, to a chaotic halt!

On a happier note, I am pleased to report that snowballing and making snowmen is an ideal pursuit for the sight-impaired male!! Soft, white and clean, with a very good contrast against darker materials. I joined neighbours and friends for a happy half hour of fun, before that much needed standby in times of snow and ice summoned me to the warmth of some Heinz Tomato Soup! And I pondered on memories of how, when I was at Swansea, my students made a giant snowball and rolled it in front of my front door on campus, to which I had to summon the University grounds staff to come and dig me out!!

Monday 26 January

This week’s edition of “In Touch” – a programme for blind and visually impaired listeners on BBC Radio 4 brings two pieces of exciting news. First of all, a talking measuring jug, which announces in stentorian tones - although at least with an English accent - the volume of liquid it has measured: for example, 250ml of water. This should prove a boon for those of us who like to experiment in the kitchen and where simply sloshing liquids in has produced unpredictable results. However, I am not sure if this will be good news or not for the various friends who may be forced to consume my burnt offerings!!

The second piece of news is about very early stages of research into using stem cells to regenerate the optic nerve and retinal cells damaged by glaucoma. Early trials on rats, linked with current much more advanced research into spinal cord regeneration, have shown some excitingly positive results. Stem cells injected directly into damaged optic nerve tissue have resulted in some regeneration of sight. But as the research involves mammals in the rodent class - rather than primates or human beings - it looks as though it will be several years before anything positive can be offered - even in the form of a trail for human beings.

Following the glorious ascent to the Presidency of Barack Obama, hearing this news of a rapid explosion in stem cell research that is now going to take place in the USA gives me some cause for hope and joy.

However… how do I argue the case for experimentation on higher mammals - having always been one of the soft liberal types, who in general has always been opposed to experimentation of any kind on animals? It certainly presents all sorts of moral conundrums when a treatment is potentially on offer. It’s somewhat easier to deal with the concept of experimentation on rats than it is on primates, with primates being much closer to us anthromorphically. If the only way to progress scientific and medical research involves very limited clinical and humane research on humankind’s closest neighbors before experimenting with consenting humans, then I guess it has to be so. That moral maze about whether restoration of sight can justify experimentation on higher mammals is one that I suspect will perplex me for time to come.

I have far less of a problem with the use of human stem cells harvested from unborn fetuses. Anyone with even a basic knowledge of reproductive biology will know that at fertilization more eggs are fertilized than is necessary. It makes complete sense with the skills and knowledge with which God has blessed us to make use of this resource - rather than it being simply washed away in menstruation. At the risk of trampling where angels fear to tread - in the realms of theology - I cannot believe that a loving creator, God, would wish us to do anything other than explore new ways of dealing with human suffering and loss and to exploit by-products of reproduction, which yes, would have the potential for life - but in practice would normally disappear!

Today I find myself moved in different ways by music. At lunchtime I attended a recital, at one of the City of London churches, given by an old friend of mine who fancies himself as a singer. And thus I sat for some 45 minutes on one of the hardest and most uncomfortable benches my bottom has experienced, whist a programme of obscure lieder was delivered. I clapped enthusiastically at the end, and praised effusively the artistry of my friend, comparing him to Peter Pears and Robert Tear (some, especially those who know me, might consider this rather damning praise!), before bidding fond farewells with much continental-style kissing.

Later in the afternoon, I find myself moved to tears whilst listening to Radio 3’s broadcast of Choral Evensong from Truro Cathedral - where the sumptuous excellence of the singing soars unexpectedly given the remote location. My own memories as a singer are heightened by the powerful beauty of Howells’s Collegium Regale setting, and Jonathan Dove’s Seek Him That Made the Seven Stars, both of which are favourite pieces of 20th century repertoire. I think wistfully of the joys that being a professional singer used to bring and the atmospheric feeling of the Cathedral Close … and quickly switch to other thoughts before starting to mourn lost skills and abilities and the ease of lapsing into languid dolorousness. Radio 4’s PM programme soon brings me back to reality, reminding me of the economic gloom hanging over the country!