Beneficial Thoughts

2009-07-09T00:59:00.000-07:00

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

2009-03-05T04:22:00.000-08:00

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

2009-02-27T03:40:00.000-08:00

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

2009-02-18T03:01:00.000-08:00

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

2009-02-10T02:56:00.000-08:00

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

2009-02-05T05:34:00.000-08:00

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

2009-01-29T02:44:00.000-08:00

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!

Monday 19 January

2009-01-20T06:02:00.000-08:00

It has been an interesting past seven days. Some of my more regular readers may have been wondering what has become of me! Quite a lot of time has been spent exploring parts of my local hospital – St Thomas’s in London - where I had the opportunity to observe some bits in closer action than I would have wished!

I was recently put on some new medication in order to try to maintain what little residual sight I have. The hospital warned me that I might experience some side effects, the most common being chronic fatigue and sickness and very loose bowels.

The fatigue soon became apparent - and is still with me - but nothing prepared me for the horrors that were to come. After a couple of days, I began to feel rather strange. Then, one afternoon, I suddenly became semi-comatose and then felt as though I was on a trip induced by LSD – or what I imagine that to be like!

First of all, I felt very light headed and then very heavy and confused. Suddenly, it became very dark followed quickly by as though I was viewing everything through rose-tinted spectacles: everything was red! I began to panic - thinking that I was having some sort of bleed in my eyes! Wondering what I should do, I decided to have a short rest.

When I woke up, I was having wild hallucinations with lots of flashing lights and scenes from fairgrounds and a feeling as though I was going up and down in some form of roller coaster. And then there were the children … I found myself surrounded by a small group of children: all white, aged between about three to five years of age, all jumping up and down in the room with me, holding knifes and waving them at me. I phoned the hospital and was told to come around immediately to A&E to get myself checked out!

Anyone who has ever attended an A&E department - especially as a non-emergency case - will know there is an awful lot of sitting around to go through; that the surroundings will be less than inspiring and that your company will include a rich variety of citizens drawn from the modern day equivalent of Hogarth and Dickens. The mad and sad and the hard and bad were all there in abundance, along with assortments of relatives, drunks, homeless, and security staff.

Fortunately, the place was relatively quiet and after taking my numbered ticket I was seen by a triage nurse within the statutory 15 minutes. My blood pressure was exceptionally high (230/190) and my eyes appeared very bloodshot, although heart and temperature readings seemed normal. And thus it was that I waited for several hours to be seen by a doctor - whilst still experiencing psychedelic visions - and putting up with the strange people around me in a very hot environment.

After a long delay, I asked one of the nurses what was happening. He investigated and found that I had been put in the queue for major incidents rather than minor incidents. He was able to fish me out of one system and into another, which meant that after another twenty minutes or so I was taken to a cubicle and made to undress for a full physical examination. A lovely doctor soon appeared and did a full examination. It turned out that I was one of the one in 1,000 who experienced some of these bad side effects and that they would go away, but I should immediately stop taking any more of that medication and return to the clinic the following day to be seen as an urgent case for review.

I was also given some drugs to help lower my blood pressure and reduce hypertension and advised to see my GP about this as soon as possible.

So, some five hours after arriving at the hospital I was home and had something to eat. And I have to say that a bit of food and something to drink made an enormous difference! I spent a disturbed night experiencing minor hallucinations but things had improved by the following day so I was able to present myself at the clinic where they listened with great interest, care and concern and immediately switched me to an alternative drug regime … which I am happy to report has few side effects and hopefully will be effective.

But as for A & E! How I would just love to get my organisational hands on them as the whole process seems so slow and disorganized … but then it is a busy London hospital and I know that away from major cities the systems are very much better.

Monday 5 January

2009-01-05T03:34:00.000-08:00

Thank heavens! Normality has returned! That odd period of offices and businesses being shut for two weeks has come to an end. Never did I think that I would love the traffic jams outside my front door or the crowding on the buses and tubes as much as I do today! Many parts of London have become like a ghost town for the past few weeks. My local small supermarkets, for example, have been stocked with shelves of small simple items rather than the more normal produce. I really don’t know where this two-week shutdown originated from but it is serious enough for Capital Radio to be running competitions where listeners could nominate any friends or family who were working to win a big prize! It’s all becoming rather like the French closure during August, which equally seems to be affecting much of the UK.

One of the benefits of people returning to normality is that you get to hear about the wretched times they had over Christmas and the New Year. All the arguments and disputes with family members, all the cases where intoxicated relatives - particularly elderly ones - severely embarrass both themselves and all the guests, and gruesome tales of inedible food or over-indulgence. A friend returning from a festive sojourn with in-laws in Cardiff, tells me that they tried to go to Midnight Mass on Christmas Eve night only to discover that the parish priest had dropped dead of a heart attack that morning, and how on Christmas Day oysters had been served up as a special Welsh delicacy, only to result in all of the party being admitted to hospital on Christmas night with severe food poisoning!

Another friend recounts the ghastly experience of visiting parents in Nottinghamshire, where a motley selection of aunties have been assembled. At present-exchanging time on Christmas morning, it seems that one aunt recycled a gift from another aunt in a previous year, presenting it to another aunt, also present. Seemingly, a very frosty atmosphere lingered for the duration of the holiday.

And another returning friend tells of the tragedy of her best friend’s brother - who very drunkenly took a short cut home across some railway lines in the early hours of New Year’s Day - and was killed by the express train that he failed to either see or hear.

It makes you realise that however bad your own Christmas and New Year was, it was worse for some other people.

Now is that time of year when we celebrate the coming of the Kings, the Wise Men, to see the baby in Bethlehem. I wonder what we would do today if we had those gifts of fold, frankincense and myrrh to offer and to share?

New Year's Day 2009

2009-01-05T03:13:00.000-08:00

It would be nice to report that was all was well, but in truth I’m not the happiest of chappies at the moment! True, some friends came round last night and dragged me out for some celebrations and we very much enjoyed the fireworks on the River Thames … along with several hundred thousand other people! Living a few minutes away from the river means that it’s incredibly convenient to get - literally round the corner - to the London Eye but not quite so good when you have to share it! Matters not helped by the Police closing off all the local roads and the whole area becoming a pedestrian only zone – complete with vast numbers of drunken revellers all seeming to pass by my front door in the early hours of this morning. But at least I should be glad that I was able to get out and appreciate the free entertainment. Several people I know seem to have been laid low with nasty viruses over the past few days and one person has been ill in bed with food poisoning ever since Christmas when their host’s cooking obviously was a bit of a disaster!

The friend that I had expected to spend Christmas with texted me on Boxing Day to wish me a happy Christmas and to say that he had tried to get through on the phone but had experienced major difficulties. He had been invited round to his bosses home for the day; he had called round to see my on the way home but obviously I had not been there. I phoned him and we arranged to meet up. I explained that I was more than a bit upset but then at the last minute that meeting got cancelled too. By a curious coincidence this was the only person not to reciprocate my “Happy New Year” text so it looks like that friendship/relationship is a thing of the past.

On top of that, I had a big falling-out with another friend over a simple misunderstanding. She’d been ill with flu, which seemed to be dragging on and on, and we were talking quite a lot on the phone. After leaving a message as well as sending a text and not hearing anything back for some 36 hours, I had become a bit worried. I then sent another text to ask if anything was the matter. This seemed to provoke a whole tirade of stuff about me not giving people enough space and that it was unrealistic to expect every call and message to be answered. So it looks like it’s time to give that one a rest - no doubt things will sort themselves out in time!

I managed to get a few days away in Brighton seeing step-family in those lull days between Christmas and the New Year - the period of indolence when few people are working but there’s a vestige of normality with trains and public transport back in operation. It is SO annoying: why do the train companies not realise that many people want to travel on Boxing Day and that there should be some sort of basic service. Certainly, other European countries seem to appreciate that people want and need to travel - but then there is a long history of different attitudes towards public service and investment in public transport!

One of the delights of Brighton is its slightly decadent and maverick reputation, including the opportunity to revel in the sheer sleaziness of parts of the city nestling alongside quaint Regency houses. Where else, for example, could you find neighbouring shops offering antiques and giant pink inflatable plastic penises?

But the true joy was the introduction to Poundland, where, yes, every item costs £1! What a sheer delight to find such an abundance of bargains and so many things you never knew you wanted until you found them on the shelves! What am I to do with those six fridge magnet clips, or the bumper pack of pens, or the amazing value wine glasses? A friend tells me that there is a similar shop a short bus ride away from my flat, so my New Year’s resolution must be to save my £1 coins ready for those shopping trips!

Christmas Day 2008

2009-01-05T02:21:00.000-08:00

There’s an impending sense of gloom hanging over me today. Various Christmas plans have gone awry; I either have to make some alternative plans pretty quick, or bury my head under the duvet and hope things will get better.

Yesterday - Christmas Eve - was a long day. There were bits of last minute shopping to do, mostly stocking up on a few essentials for the days that the shops are closed, as well as delivering presents to various friends. One friend took pity on me and gave me a lift in his car, as I have to get to the local Royal Mail Sorting Office by 1pm to collect a parcel that the postman had been unable to deliver. Mysteriously, I had been “out” when he attempted to deliver it. I swear that they prepare those little cards in advance and don’t bother to ring the bell to save the trouble of carrying things round with them! The friend also took me on a detour so that I could deliver a couple of presents to the “special friend” where I was supposed to be going on Christmas Day. I struggle with the letter box thee to do my Santa bit, squeezing a couple of gift-wrapped books and some cologne through the fearsome letterbox!

In the evening and morning it’s off to religious celebrations. It is good to see large congregations swelling the ranks at both Midnight Mass and also on Christmas morning. Increasingly, it seems that people are going away for Christmas and so some familiar faces are not around. Perhaps the secularisation of society means that people who might have turned out at Christmas and Easter are now taking a raincheck on these things – although it was very cold!

All contact with the friend I was expecting to spend Christmas afternoon and evening with seems to fail. The phone keeps going to voicemail and I get no reply to text messages. So, at lunchtime I have to make the decision about what to do and having reassured other friends that I was taken care of, I phone up my Muslim friend, Baz, who I know is having a quiet day as he doesn’t celebrate Christmas. He tells me to come on round if I can find my way up to Stoke Newington! It was an expensive taxi up there, which included a quick visit to my friendly local Afghanistani shop where they know that customers want things 365 days of the year!

It turns out that Baz has a heavy cold; however, not being a particularly strict Muslim he soon perks up when he sees the bottle of whisky that I’ve brought with me! We end up getting very drunk, eating a lot of chocolate and nuts, and devouring various strange vegetarian concoctions that make a pleasant change from Turkey and other meat-based traditional fare. I end up staying the night, and actually getting to know a guy who was originally just a casual acquaintance much better.

Just goes to show that it’s always good to have a standby plan ready - just in case! Oh, and that sometimes people who you thought were friends will let you down!

Monday 22 December

2009-01-05T02:05:00.000-08:00

Well, there are only a few days to go now until the big day, when, to quote the carol: “Christmas comes once more”. I’m looking forward to a few days of normality before the hectic days of Christmas kick in; unbelievably I seem to have done most of my preparations! It also seems good that after more than my fair share of Christmas Carol Services I can have a wee rest, until the time comes to celebrate rather than anticipate the birth of the Saviour.

Last night an old friend of mine congratulated me on my excellent memory, when we were at a service of Nine Lessons and Carols. Fortunately, having been a chorister as a small boy, the words of many carols are firmly engrained in my mind. I can sing them all from memory – somewhat helpful when you can no longer read the words in the booklets handed out at most places. For some reason, churches tend to forget that the Disability Discrimination Act covers things like service booklets, and very rarely have I come across large print versions being made available. Anyway, I had a good sing - along with some old friends - and it was only occasionally that unfamiliar modern carols, or the more obscure that I only knew vaguely, caught me out!

The final Carol Service before Christmas coincided with birthday celebrations for one of my oldest friends. December 21st is not a good time of year to be expecting much on the present front for gifts that are not Christmassy or linked with the festive season! However, clearly all of us had worked hard to find gifts that would be acceptable and distinct. As we drank festive champagne and tucked into some rather delicious Spanish nibbles - thoughtfully provided by a friend who was visiting from Madrid - two separately themed piles (a birthday pile and a Christmas pile) grew mysteriously throughout the evening. My choice of present - a model of Margaret Thatcher that turned into a nutcracker (to be broken between her legs) - seemed to be in slightly poor taste compared to the books and DVDs that were preferred by my companions. Fortunately, my choice of Christmas present – a Nigella Lawson cookery book and a device for charging mobile phones in an emergency – seemed more on the tasteful side!

It felt somewhat strange as a group of 40 and 50-somethings all gathering together before the great Christmas getaway. We laughed and joked and had learned discussions about Christmas food all over Europe (other countries are so lucky to be free of the tyranny of the turkey). We also discovered a delicious way of eating Brussels sprouts – oven baked with cheese over them. And there was the bizarre revelation by a senior BBC journalist that she had recently been taught to pole dance when attending a hen party!

Time now to start wrapping those final presents and preparing to spend some time with “loved ones”.

Monday 15 December

2008-12-15T03:36:00.001-08:00

They say that crime is going down. Based on recent evidence, I strongly doubt those statistics. Maybe it is “reported” crime that is going down; anyone who has ever had to report a crime to their local police will testify that you nearly give up the will to live whilst you wait on the phone to get through to someone, or queue for hours at a Police Station surrounded by various misfits, victims, and criminals.

A few nights ago, I was an audio witness to a vicious attack. I was chatting on the phone to one of my best friends as he walked home from Stratford Station after a long day of hard work, where he’d put in a 14-hour day. We were laughing and joking about nothing much in particular when I suddenly heard a commotion and a scuffle. A strange voice in the background said: “Hand it over” and then the phone went dead. I tried calling back but it went straight to voicemail. I then phoned the Police on 999 and explained what had happened. The only location for my friend’s whereabouts that I could give was somewhere between Stratford Station and my friend’s address. They took my number and said they would call back with any news.

Minutes ticked by and I became more and more anxious. Fearing the worst, my head filled with bizarre thoughts about hospitals, having to pretend to be a close relative, contacting family, and even the awfulness of having to identify a body. Just before midnight the phone rang; it was the police who had my friend in the police car with them. It turned out that he was safe and well - if a bit shaken up.

A few hundred metres from his front door a man had suddenly come up behind him, held a knife to his throat and demanded that he hand over his phone, all his cash and for some reason, his keys. Not surprisingly, my friend obeyed the instructions. Although he’s young and fit, you don’t argue when a knife is being held to your throat! The thief then did a runner. Two minutes later the police arrived by car and asked my friend if he was the one who had been attacked. As the attacker had come from behind and had remained behind at all times, it was not even possible to give a description. All the Police could do was take a short statement, issue a crime number, and then get my friend back to the station so he could catch the late tube to Waterloo to collect the spare set of keys to his flat that I had.

At about 1am my poor friend turned up at my flat looking very miserable. We went through the process of reporting the phone stolen and getting it blocked. My poor friend then had to head out into the night again to take the night bus home. He needed a change of clothing as he had an important meeting to attend at 9am. Seemingly, there’s no chance for a rest or flagging if you’re a young entrepreneur with a growing business to run!

The following morning I acted as secretary contacting the insurance people and phone company. I have to say that apart from the irritation of having to call an 0845 number, T-Mobile turned up trumps as a replacement phone and SIM card arrived by lunchtime the following day. My friend was soon back in action - apart from the inconvenience of having lost his entire address book - which he had lovingly recreated after his previous phone was stolen some months before from his locker at the gym he attended. So, the moral of this story is to always back-up your mobile phone address book!

The thief got away with £30, and a mobile phone that was blocked within an hour of the incident with the handset rendered useless by its IMEU number being blacklisted. But the thief’s actions caused massive emotional trauma - both to my friend and myself - excess charges on the insurance premium for the phone and replacement SIM card, as well as the cost of having the locks replaced at his home. A stupid, senseless crime - probably to fuel a drug habit - caused massive inconvenience and stress.

It’s at times like this that even liberal-minded people like myself think that there is something very wrong with society, that people should be able to safely walk the streets of our capital city at any time of day or night, and that the criminal justice system needs to be a little more punitive, and a little less forgiving!

Monday 8 December

2008-12-08T06:53:00.000-08:00

It’s been a very chilly few days recently in London with icy winds and low temperatures. And because things never happen at opportune times, it was last Wednesday that my neighbours noticed a smell of gas and called out the gas board to check. So on Wednesday evening, I arrived home to find much of the pavement outside my street front door dug up, a team of British Gas workmen digging more holes, and the gas cut off! On Thursday morning they came and turned off the supply in my flat for safety reasons, gave me a telephone number where I could ask for a temporary electric hotplate to cook on, and cheerfully said that it could be some days before the gas supply could be restored!

That night a friend of mine who had just arrived in the UK from Saudi Arabia came round to see me. Having been used to nighttime temperatures in the mid 20s, he found London distinctly cold and my flat like a fridge. He’d intended staying with me for a couple of days but stayed for an only hour before apologising and finding some other friends to stay with!

I managed to lay my hands on an electric radiator and a fan heater the following day. While these improved things no end, I could almost feel the electricity bill notching up every time I turned the fan heater on. Fortunately, on Sunday the workmen returned and announced with pride that they had isolated the leak and that it was safe to turn the gas back on. Never has that reassuring whoosh of the boiler coming on been such a sweet sound and the ease of turning on the hot water tap and hot, rather than tepid, water coming out of it been so welcome!

It’s that time of year when Elizabeth Finn Care beneficiaries receive their Christmas Hampers. After a couple of abortive attempts at delivery whilst I was out, my hamper arrived. As always, there is the excitement of opening the box and digging around in the sea of white polystyrene packing shapes to discover what goodies are lurking deep down inside. The cold weather gives it an extra frissant, and of course there is always the pleasure that getting anything brings.

My delving into the polystyrene-filled box reveals the normal eccentric mix of the really useful, the odd treat, and a selection of the bizarre and useless! The spirit of Marie-Antoinette and Paddington Bear seems to permeate the selection as cake and marmalade and jam seem to dominate. There’s some cheese and dates, a Christmas pudding, mince pies, chocolates and a bottle of wine … but what will I do with a tin of whole red peppers and the royal game soup? Or the pickles and the chutney, and the redcurrant jelly? As I ruminate over these questions whilst contemplating the After Eight cloned chocolates and the chocolate nuts packaged to look like just Brazils, I ponder how difficult it must be to please all those people who receive hampers!

Earlier in the week, I find myself being whisked off to Bedford for a meeting to try and make the Elizabeth Finn Care name better known in Bedfordshire. There’s an illustrious selection of guests from the voluntary sector there - including the High Sheriff - when it comes to talking to the group about how things went wrong for me, I find myself unusually moved by my own story and how I ended up needing help. Several times I find myself becoming tearful and emotional, however, I am reassured to get a sympathetic round of applause. I am told later that I genuinely moved some of the audience … so even the saddest of tales can produce positive results.

Monday 1 December

2008-12-04T03:16:00.000-08:00

I wrote recently about the outcry around the Baby P case. It was good to hear this week that the people at the top of the London Borough of Haringay are to lose their jobs. However, the news reports have also included material about some of the more mawkish British behavior: families making pilgrimages to Islington Crematorium to leave floral tributes, teddy-bears, toys, and other tributes along with messages of a sentimentality that is both gushing and embarrassing. There does seem to be some peculiar trait that comes through at times like this - just as it did with the death of Princess Diana - that some parts of the population feel almost obliged to take on a mantle of collective mourning for those who they never knew and that somehow a bunch of flowers from the corner shop, or a similar object, will cleanse and salve the national conscience. It was bad enough with Diana, let alone the repeated behavior that has been marked when children have died in tragic circumstances … let us all hope that this trend starts to reverse rather than grow, as I for one am left feeling a bit cold about the whole thing.

On a different subject, one of the most irritating things in many shops is their obsession with moving things around; changing the long-established locations of certain items and discontinuing what you thought were popular lines on, seemingly, a peculiar whim all of their own! At one time, Marks and Spencer were the supreme culprits at this. Now, other retailers seem to be muscling in on the act with equal relish.

Wearing a marketing hat, I can understand some of the logic surrounding this, as obviously the shops want to let customers see new lines and discover products that they might not have tried before. But, of course, they risk the ire of customers who simply want to pop in quickly and get the item that always lives on a particular shelf! It is bad enough when you can see – imagine how much more difficult it is for people, like me, who cannot see very much!

As it’s coming up to Christmas, all the supermarkets are gradually making spaces on their shelves for special Christmas stock. Life is becoming increasingly difficult as I search for familiar items in vain only to find that they have been moved to somewhere obscure, or worse still, temporarily gone out of stock to make way for mountains of mince pies, jumbo packs of chocolates and biscuits, and all the other seasonal lines that seem to clog up the supermarket aisles in the countdown to the festive period. Retailers seem to believe that we all want to gorge ourselves on a highly calorific diet throughout December rather than just have those treats as treats! I remember a few years ago, some of the Virgin stores declared themselves to be Christmas-free zones … it was wonderful!

My local branch of Sainsbury’s - being a small one - uses the Post Office style of queuing, with recorded announcements for “cashier number one, please” and so on. This, of course, is a boon if you cannot see where the gaps are. I find myself waging a bit of a battle with unthinking staff that forget to use the announcements and just wave at the queue - or unhelpfully call out: “Next please!”

I tend not to use my white stick unless I’m in crowded places. I find that waving it around seems to increase staff comprehension about why the announcements about which cashier to go to make such a difference to me - as does their telling me when to put my PIN number into the machine. Otherwise, I stand there - finger poised - until they realise that they might need to give me a bit of assistance!

Progress indeed!

Monday 24 November

2008-11-24T06:51:00.000-08:00

Arctic winds are sweeping the country, and it really is very cold at the moment. Like most people on a low income I am getting incredibly worried about the fuel bills that will be coming in soon. Although I live in a well-insulated flat with good double-glazing, neighbours on either side and above and below me, it still gets cold! And so I am faced with that awful dilemma of whether to turn the heating on during the daytime or not, and whether I should have warmth or hide under the duvet and hope that I can keep warm! It’s the same old unfortunate story of trying to get the balance right, and the fact that the Government does not seem to realise that just like old people, disabled people are vulnerable to the cold.

All this comes amidst speculation that the Government is going to play with the tax system - reduce VAT and possibly raise the tax rate for higher earners. Bring it on is what I say! VAT always seems a rather unfair tax; it really has its roots in a desire to lower direct taxation and merely pass the costs on to consumers. At least fuel costs may come down a wee bit because of a VAT rate reduction, but probably not in time to help with the winter fuel costs. And as far as higher earners are concerned, it seems only just that those who earn a lot of money should pay a lot of tax. Or maybe I live in Cloud Cuckoo Land hoping that we may have a fairer and more equitable society.

Over the past few months, my life has been transformed thanks to the power of Vodafone. Back in the summer - after a huge amount of haggling and being sent all around the houses - I managed to get Vodafone to give me a mobile handset with “Talks” software installed on it. This reads all the commands on my mobile phone to me - in a Stephen Hawking style automated voice - and has literally transformed my communications!

At one time, I was always dialling wrong numbers and ending up speaking to the wrong friend through pressing the wrong sequence of buttons. Text messages were definitely a real pain as I simply could not read them, and I used to get exasperated when people who should have known better insisted on sending me these SMS’. Now, my phone reads them to me and also reads back to me what I have been inputting in replies. Life is a breeze! The number of texts that I send and receive has shot up from two or three a month to five or six a day! I’m really beginning to feel that I have caught up a bit with technology. All thanks to a simple piece of software that runs on high-end mobiles, such as the Nokia N series.

A chance conversation with some of the Elizabeth Finn staff about the joys of social networking sites on the Internet has also produced some transformations. I’ve yet to take the plunge with the big one – Facebook – but other smaller and more niche ones have certainly produced some interesting contacts. Friends- both new and old - seem to have appeared from nowhere and on some days I find myself struggling to keep up with different messages! Obviously, some are better designed than others, and I constantly come up against the challenge of badly designed websites where it’s impossible to get text large enough for me to read without it becoming jumbled up. When I am feeling grumpy with them I remind them of the requirements of the Disability Discrimination Act, and that often has some positive effect!

Monday 17 November

2008-11-18T03:08:00.000-08:00

The last few days seem to have been frenetic!

On behalf of Elizabeth Finn Care, earlier in the week I spent a morning in a radio studio in Central London, talking to different radio stations all over the UK and Ireland about my difficulties and the issues facing disabled people. Recent research carried out by NOP suggested that some two-thirds of the British public think that disabled people are lazy - simply sitting around doing nothing. The reality is very different and I was keen to get that message across to listeners. It was a busy morning packed with many interviews, which produced waves of nostalgia from the days when I used to do a bit of radio presenting. One of the stations greeted me like an old friend, which was really good. It certainly gave me a bit of a boost.

The news agenda recently has been filled with the tragic case of Baby P, who was callously ill-treated over a long period by his mother and various friends of hers up in Haringey. It seems almost unbelievable that the same Borough that allowed the Victoria Climbie case to take place should fail in this way yet again, and I find myself sharing in the popular outrage promulgated by the Press and Media. Serving as a school governor, as well as my involvement in a couple of voluntary organizations, has brought home to me the importance of good child protection procedures in order to safeguard those who are most vulnerable in society.

It is a disgrace that Baby P was not taken into care. Yes, of course good practice should always try to facilitate families staying together. However, over the course of a few years, I have come across numerous cases where the so-called “family” is totally incapable of looking after a young child - let alone themselves. To try to pretend that blood ties are sufficient to make a family unit coalesce together and function is simply to live in cloud-cuckoo land. Maybe we need to accept that some people are just too stupid, lead lives that are too chaotic, or exist in a situation that is virtually feral, and realize that for the good of the children they must be taken away. Perhaps we should even think the unthinkable: take measures to stop some unsuitable people having children until they can prove that they have adequate parenting skills!

I discuss the issues raised by my psychiatrist last week - that I may have Sado-Masochistic tendencies - with my therapist. Dismissing them as a load of nonsense, she told me not to worry! She reassured me that in the couple of years that I have been seeing her, such thoughts have never surfaced. Certainly in the accepted sexual sense everything seems to be quite healthy and I have no interest in such thoughts! The only slight correlation was my need for nurture and parenting and the disappointment I sometimes faced when people who I expected to fulfill this role failed to do so.

There was good news when I returned to the hospital later in the week to visit the glaucoma clinic. As usual, there was the long wait to be seen (why hospitals find it impossible to see people at the appointed time is a mystery!) My Consultant eagerly tells me that he has just returned from the USA where he discussed my difficult case with experts from all over the world! Upon checking my eye pressures, he is surprised to find that they are at an acceptable level (12 and 16 for those who understand these things) and is very pleased that, at the moment, things seem to have stabilized. We had an interesting discussion about hypertension and how this condition is being better managed now as well as emotional happiness and its effect on sight, and agree that we should continue to monitor the situation. So, a bit of good news to round off the week!

Finally, I take some pleasure in being able to sort out a young jobless friend with some work by pulling a few strings and making a few phone calls. I persuaded a contact to give him an interview, which resulted in him being offered a management trainee post - effective immediately! I feel a bit like a proud parent must feel when their children get their first job. Fortunately I don’t have to provide the packed lunch though!!

Monday 10 November

2008-11-11T08:26:00.001-08:00

It’s been a stupendous week for anyone interested in politics with one of the most exciting US elections for years, and a victory for the Democrat, Barack Obama.

On election night itself, I lay in bed listening to the coverage on the radio - switching between Radio 4 and Radio 5 Live - depending on how my mood was taking me. Eventually James Naughtie's droning interminable questions sent me off to sleep, but fortunately I woke up again just in time to hear Obama’s acceptance speech. Another great demonstration of his amazing powers of oratory in an almost Churchillian way, and which certainly moved me. I am sure the new US administration will have far reaching effects all over Europe.

The following day I see yet another new psychiatrist. Somewhere in “the system” there’s a Consultant who I never get to see and instead I deal with a succession of Registrars, all of whom last for a year before being moved on to another hospital. It’s very frustrating that these relationships are so transitory because it takes a while to build up trust and get to know a new doctor. I raise this issue with the new one, who seems pleasant enough although it takes me a while to get used to his accent. He suggests that maybe my expectations of the NHS are too high and that I possibly have sado-masochistic tendencies, as I seem to enjoy having a moan! I’m left wondering whether there might be some truth in all this – clearly a subject to raise with my psychotherapist next time I see her.

More frustration with the NHS arises when I try to book an appointment to see my GP. I am told that there are no appointments available at all and to call back in a couple of days, when a new booking period may have been opened up. When I do so there is still nothing with my own doctor, so I end up with an appointment several weeks away with a new doctor who has joined the practice. It seems ridiculous that the only way round the situation is to use the book on day arrangements for people who need to see somebody that day … and I prefer not to clog the system up.

On a brighter note, a friend of mine entertains me to a rare treat and takes me to see a film. The film comes complete with audio description and seats right at the front of the theatre; this ensures we are very close to the screen so I can follow the action. It turns out to be a preview screening of a new Meryl Streep movie to be released at the end of the month. I feel even more privileged as it’s a small movie theatre in the West End without all the adverts and trailers - and not a bit of popcorn in sight or sound!!

We go for a drink afterwards to catch up on things. As he’s someone I know well, there is not the usual embarrassment of having to ask to be guided to the toilets. We both have a giggle over the disabled toilet being located at the bottom of a steep and precarious staircase!!

Monday 3 November

2008-11-11T08:25:00.001-08:00

Amidst the fuss over Jonathan Ross and Russell Brand’s antics recently, it has emerged that BBC executives seem to also be paid obscene amounts of money. I find myself pondering what an unfair and unjust society we live in, with such huge disparities between the wealthy and the poor and the rather bizarre anomaly that the BBC licence fee doesn’t come out of taxation, but instead every household has to pay. One of the few blessings about being blind is that I pay a reduced licence fee, but it’s still irksome that I have to pay up yet have little say in how that money is spent!

Also on the news agenda is a campaign by MacMillan Cancer Care. Highlighting the fact that only pensioners over a certain age get the winter fuel allowance, MacMillan Cancer Care argues that people affected by cancer who are unable to work should also receive this allowance. I am inclined to agree. Lots of us who are affected by disability are also at home a lot and also feel the cold! Let’s hope that this campaign gathers force because the last few days in London have been bitterly cold! I constantly face the dilemma of whether to have the heating on and watch my heating bill rise or keep it off and shiver! It’s all very well for the Government to say that there is help available for insulation and keeping the heat in – it’s help with fuel bills that is needed, given the huge hike in costs recently, costs that are not matched by any increase in benefits!!

November always seems a rather sad month: winter seems to have arrived, it gets dark really early, and there are all the connotations of the dead. I’m writing this on All Souls Day, so my mind turns to family and friends who have died, as well as people that I have loved or who have made a mark on my life in some way. It’s easy to become melancholic, but fortunately I am propelled back into fits of mirth by coverage on the radio of the latest antics of Sarah Palin and her desire to be next US Vice-President!

All the joys of the US elections are shortly to come. Anyone would think we were the 51st State of the Union, given the blanket coverage here of the US elections! At least we have a British Formula 1championship winner to celebrate!!

Monday 27 October

2008-11-11T08:24:00.001-08:00

The news today is full of the proposed changes to the Incapacity Benefit and the new medical tests that are to be introduced. Like lots of disabled people, these new rules and tests fill me with fear and dread.

Yes - I’d love to be back at work, not least because of the money aspect, but also because of the companionship and motivation that it brings. However, last week, for example, I spent three mornings at my local hospital having different medical conditions treated. The reality is that not many employers want to hire someone who’s blind and has mental health problems, so has to have lots of time off for medical appointments!

Most of the disability charities seem to be kicking up a fuss, so time will tell.

Monday 20 October

2008-11-11T08:22:00.000-08:00

It’s a busy week with lots of medical appointments. I also need to attend a couple of important meetings at one of the local schools where I serve as a economies - they seem to think that I will be good at identifying these. Like lots of other London schools, they have a problem supporting children for whom English is a second language and who come from many other countries; there simply is not the money to give them the support they need.

I’ve also decided to dip my toe into the jobs market to see if there might be anything around that would suit me - perhaps on a part-time basis - and have contacted one of the government’s agencies. Bizarrely, although there are all sorts of grants for equipment and support for blind and disabled people once they are in work, there is nothing available in terms of specialist equipment, software, or personal support to help you back into the workplace!!

Monday 13 October

2008-11-11T08:21:00.000-08:00

It is my mother’s 90th birthday this week. I have decided to make the effort to go down to see her for the occasion, after not having seen her for several years. The trouble is that she lives a couple of miles from Land’s End in Cornwall - not the sort of place you can pop in to on the way to somewhere else. As well as that, it costs a lot of money to get down there, money I simply do not have!

I brave the six-hour journey; my mother is genuinely pleased to see me and we spend a pleasant few days together. Seeing someone so old reminds me of my own frailty. My mother has numerous health problems and relies on home help and nurses coming in to see her, in her isolated cottage in the middle of nowhere.

Being a Londoner, I soon miss the noise and bustle that I am used to. The silence is eerie, without the sounds of emergency vehicle sirens 24 hours a day. As my mother exists on a pension, I cannot ask her for any financial support towards my journey, so will have to economise heavily – the cost of the trip and a small present for her is equivalent to what I get in benefits each week!

Monday 6 October

2008-11-11T07:50:00.000-08:00

For the first time, I get to visit the Elizabeth Finn Care offices in Derry Street to talk about ways in which I might help publicise the work of the charity.

It’s a bit complicated getting there. The office seems to be past the loading bay for some large shops and round a corner, but I find it eventually. I am surprised at how large the operation seems to be! Occupying a whole floor of a large office building - most of it open plan - staff are clustered into groups of activity with some private offices for senior staff around the outside of the main work area. Despite having spoken to her on numerous occasions, I still do not manage to meet my caseworker, as she is not there that afternoon!

In the same week, my television gives up the ghost after 15 years of service. Nobody seems to repair TVs these days, so I have to get a replacement one. The price comes as a shock: £399 for one that is large enough for me to actually see something on the screen. However, the price includes a 5-year guarantee and a nice man coming around to set it up for me.

This is where Elizabeth Finn Care comes to the rescue. I request a £400 allocation from my special needs grant; the cheque arrives a couple of days later and I am soon back viewing. I hope and pray that other pieces of equipment in my flat - such as the 15-year-old washing machine that has started to make a funny noise - does not also pack up this year!