Thursday, 9 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!
Thursday, 5 March 2009
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.
Friday, 27 February 2009
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!
Wednesday, 18 February 2009
Tuesday, 10 February 2009
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 …!
Thursday, 5 February 2009
Thursday, 29 January 2009
Tuesday, 20 January 2009
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
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?
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!
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!
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!
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!
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!
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!