Monday, 24 November 2008

Monday 24 November

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!

Tuesday, 18 November 2008

Monday 17 November

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!!

Tuesday, 11 November 2008

Monday 10 November

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

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

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

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

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

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!