The Perils of Self-Infliction

After having been drenched by numerous intense downpours this week, I am very aware of the drawbacks of living in wonderful scenic Swansea. Childhood memories of the Water Cycle, sea-evaporation-clouds-hills-rain are not quite true because the rain never makes it to the hills round here – maybe its just tired – but it should make it more than a mile inland surely???

Anyway, I was musing that in some way my regular wettings under torrential rain could be self-inflicted by my love of living in Swansea!

This has some relevance with news this week that some medics in our troubled and over-stretched Hospital Accident and Emergency Departments are considering charging certain individuals for treatment. This is a radical departure for the National Health Service, charging people at the point of need, but the problem has reached epidemic proportions. The cause are those young people that choose to imbibe so much alcohol that they experience medical problems, clogging up emergency rooms with the consequences of binge drinking. The medics have a point, their resources should be given to non-self inflicted injury!

However, if this principle of self-infliction is taken to its logical end, surely individuals who experience the onset of Type 2 diabetes because of bad lifestyle choices, lack of exercise and the wrong food may also be subject to charges because of self-infliction! Its just a thought…

A Beautiful but Distracted Mind…

There was a story on the BBC news last week about Ritalin, the drug used to moderate the symptoms of Attention Deficit Hyperactivity Disorder. According to the BBC, and other learned sources, symptoms of ADHD range from poor concentration and extreme hyperactivity, to interrupting and intruding on other people and not being able to wait in queues (though this last is shared in my experience by many teenagers!  

Ritalin is an amphetamine (mild stimulant) which works on the central nervous system to improve concentration. Although it is licenced for the treatment of ADHD, it is still an amphetamine, an addictive class A drug. Anecdotal comments in the educational system in Swansea have cited examples of parents getting their sons (as boys are 3 times more likely to experience this condition) on Ritalin, only to sell the drug on the street to boost their income.

This form of treatment has been criticised because it can cause serious side-effects in some children, leaving them depressed, robotic, lethargic, or withdrawn. I remember watching the film A Beautiful Mind the story of the Nobel Prize Winning Mathematician John Nash, amazingly played by Russell Crowe. Although this was a completely different mental condition, schizophrenia, the effects of the medication on him seem to be remarkably similar to the side-effects experienced by some taking Ritalin for ADHD.

Nash decided not to take his drugs and to live with his hallucinations instead. This course of action may not be possible for many to completely abandon Ritalin, as they need the at least some of drug to be able to concentrate for study, at home and to be generally socially acceptable. I assessed a number of students with ADHD, and I do not think that they would have been able to sit in a room with me for 90 minutes, or indeed in lectures without the aid of the drug and even then it was a little bit of a struggle for one or two of them to keep concentration levels at their optimum.

As the BBC reported “The government’s drug watchdog ruled in 2000 that Ritalin should be prescribed on the NHS to children with serious hyperactivity problems. It is not licensed for people under the age of six, but doctors have prescribed it to children as young as 15 months. There is also concern that doctors are prescribing the drug without considering alternative treatments.”

Maybe there is a parallel here again with the treatment of schizophrenia, where there was, and perhaps is still, too much reliance on drug therapy for some clinicians and not enough investigation into alternative therapies. As more and more individuals are diagnosed with ADHD, shouldn’t lessons be learned and natural spirit not be completely wiped out by drug-induced control?

More Than Not So Neet!

There has been a report by the Liberal Democrats, one of the political parties in the UK today, saying that 20% of young people in the country are Not in Employment, Education or Training (otherwise known as NEET). They are obviously worried about this, as these individuals are potentially part of a lost generation.

However, the situation is even worse for those of us with a disability. 60% of Disabled People are unemployed. Many of them, like myself, would like to work, but do not get the opportunity. Since redundancy in August 2005, the prospects of my own employment seem to have virtually disappeared. Pain and lack of mobility does make my job prospects very slim.

I understand the cost of 2.6 million people on Incapacity Benefit is a large drain on resources especially in economic downturn. However it seems that those who are forced to claim Incapacity Benefit, including myself, are vilified by a Government which seems to regard the majority of claimants as benefit cheats. The situation makes the process of making continuing claims, even by the vast majority of genuine recipients, very difficult.

To help disabled individuals back into work the Government has a scheme called Pathways to Work. I was inducted onto this program but have been frustrated and irritated by whole scheme. It provides cursory job seeking skills and support but ties claimants to an external Jobs Broker with no time and no resources to actually get a job for clients. It just appears as if they are doing something, and that is enough for Government payment. For instance, a client with a disability cannot do any voluntary work to revive work skills that is not within a voluntary organisation authorised by the Jobs Broker. How much more are these circumstances going to be duplicated when more and more of these schemes are contracted out to companies/charities for profit – and there has to be profit, otherwise why respond to the tendering process.

The unfortunate individual assigned to me has admitted she has no vacancies suitable. Although she can’t admit it, she is unlikely to ever have. It is really terrible that I have had a couple of offers from people who would like to use my skills while I’m waiting around, but because they are companies, they don’t fit the profile and I miss out again.

Suppose they should rename the scheme “Static Car park to Work!” We vulnerable “cars” are taken from sight and “sheltered” but we are never going to get anywhere unless proper resources are given to the scheme!!!

The Blue Genes Time Bomb

I’ve been in very reflective mode recently, with the anniversary of my mother’s death at age 41 releasing a number of memories, both quirky and sad…

I was distraught at 16, holding her on her last morning during a severe asthma attack, until I was moved out of the bedroom by the GP attempting resuscitation. My mother had contracted tuberculosis, a rarity in 1980, and because of asthma from her childhood, didn’t really have a hope of recovery. In her family, chronic asthma skipped a generation, passing from her grandmother to my mother. tick-tock, tick-tock… It is also present in a couple of my nieces and nephews, but with the hope of improved medication, they have a good hope of avoiding fatal asthma attacks.

I am now 42, a year older than my mother was, and yet on the morning of her death, a relative said that she thought that it would have been me to die before my mother. I suppose she had a bit of a point. I was born at 27 weeks, weighing less than 2 kg, given only 5 minutes to live and the almost inevitable cerebral palsy afterwards, due to the infancy of neonatal care in 1966. Follow that with meningitis as a toddler, Type  1 diabetes at 10, with all its hypoglycaemic comas and an accidental medical personnel-induced hyperglycaemic coma which sent me into intensive care 60% dehydrated, and doing a very good impression of an Egyptian mummy! tick-tock, tick-tock!

There is no doubt that the asthma gene eventually played a major role in the death of my mother. My development of type 1 diabetes, where my own immune system caused the disease. It destroyed the smallest, most delicate and, as research into the side effects of diabetes is now showing, one of the most important organs, the Islets of Langerhans within the pancreas, which produce insulin. tick-tock, tick-tock…

This consequence of this genetic destruction, with the visual, kidney, circulation, hearing, dementia, depression and other problems that we are told are in store for us if we don’t try to slow it down, is a genetic time bomb of nuclear proportions. tick-tock, tick-tock, tick-tock…. BANG

Roll on stem cell technology, our best help for genetic disarmament!!!

Mirror, Mirror in Others’ Faces…

I know there has been a great fuss recently about giving disabled children dolls with a disability so that they have a toy to identify with. But to be fair, the dolls must mirror a true image of the disability, otherwise these dolls will only reinforce the negative image held by some in society.

Parents with children with Down’s Syndrome have certainly reacted negatively to the concept, as it looks as if the dolls for their children’s condition are very stereotypical, and therefore quite negative – showing the worst aspects of the condition. Surely that is what the dolls should be counteracting? Having a doll should be a normal thing, but it can’t be if the disability is only a stereotype…

I think that it is fine for those disabled children that wish to have dolls with a disability, but I don’t think they should be a mandatory ‘gift’ from progressive professionals. Also, I hope that access isn’t restricted to the disabled alone, as I think it would be a useful tool for other young children who have limited knowledge of illness and disabilities.

I’m sure the debate will continue, and I will be very interested in how it progresses…

The Backbone’s Connected to Just about Everything Else!

mmmm… twisted around one day last week and heard and felt a click. Then came the pain… I’m not surprised that back pain is a major source of incapacity, but what is worse, I’ve found that my back is connected to so many other bits of me – arms, shoulders, neck and feet – that it’s making it’s presence felt more than I would like it to. Back pain hurts a lot. Still, at least I’m able to feel pain in my spine, so not all is bad.

You may have gathered that I’m not put together like most humans… It just gives my friends even more evidence that I’m an alien!!! I have a severe curvature of the spine, giving me a rather interesting 18th century drunken pirate’s gait, even though I’m sober (honest guv – well most of the time anyway!). This means that most osteopathic or chiropractic routes seem to be out of my reach as they will do more damage than good and definitely not the one that allows someone to walk up and down your spine – is that called Shiatsu?

One thing though, as I can bend down even less than usual, I seem to be becoming very unlucky. I dropped a number of knives on the floor and shouldn’t pick them up because its bad luck, but if I don’t I’m going to cut myself, or the cat is going to cut her paws… etc. etc. Maybe the backbone’s connected to just anxiety after all

In the Eye of the Beholder

I heard yesterday that my favourite painting, Monet’s Water Lily Pond, was sold at auction for £41 million, which I think works out at around $80 million at the current exchange rate. Perhaps art really is recession-proof! There were certainly 11 people bidding who felt so…

Noteworthy from my perspective is the fact that Monet painted this work in 1919 when his sight was seriously impaired by cataracts. When he had them removed in 1921 and looked at the work again, he didn’t like it.

I am certainly grateful, as a fan of this soft-focussed piece of art, that he didn’t destroy it. Is it possible to say that Claude Monet’s Impressionism was a consequence of his visual disabilities? Am I, what I do, how I react, a consequence of my multiple disabilities too? That is a great philosophical conundrum, and I’d love to know what the answer is. It is more than likely that my life would have been different if I didn’t have a disability, but whether for good or ill, who can tell – maybe I’ll give it more thought and come back to it another time.

 

Recycling and Regeneration

I’ve been having an interesting experience this week putting out the rubbish. Swansea Council has been encouraging its residents to recycle, and has made further improvements by allowing the recycling of cardboard recently. So there I am, filling recycling bags with a mountain of cat food boxes (it’s only now that I realise just how much my cat eats!) feeling good about being green. My small contribution to solving a very big problem.

Moving to another recycling theme, I know there has been some pressure in the medical community for the adoption of the concept of “implied consent” for the donation of organs after death. After all, there is a worldwide shortage of donors and no prospect of improvement in the situation. A recent UK poll showed a large majority of people in favour of organ donation. However, there is a relatively small proportion of the population that carry the card showing active consent to the donation of organs after death. It is hoped that implied consent will make more organs available for transplantation.

I certainly agree with the concept, though over 30 years of Type 1 Diabetes has made most of my organs useless for donation. As one in three diabetics will develop kidney disease, as a group we are very grateful recipients of the process, but are unable to reciprocate because of the internal damage this disease causes to our own bodies. There was an item on ABC news in the USA recently adding to the gloom. It is common knowledge that our condition can damage our sight, but now there is evidence that diabetics could experience twice the level of hearing loss of the general population. Hey, ho, …. fight the good fight!

On a much more positive note, the work on stem cells promises much for chronic conditions like diabetes. These cells will eventually, I hope, allow the body to regenerate. This, along with other promising therapies, such as a Patient’s Recovery from Terminal Skin Cancer reported today (thanks to the Daily Telegraph), offer something for most of us.

Unfortunately, on a personal note, I wish to mark the imminent passing of a wonderful human being from this world to the next. Such regenerative therapies are coming too late to save her from secondary cancer, but she definitely fought the good fight.

 

Woof, Woof, Wales

I, and my shopping, were walking home after getting off the bus today and one of the neighbourhood dogs started barking at me. The dog wasn’t a problem as he was on a lead, and wasn’t a massively mean brute either! His owner said “he is only barking at you because you are different, but you do OK…”

At that current moment in time, I definitely WAS different, forging purposefully up hill with a huge bag of shopping on my left shoulder and my walking stick, aiding my ascent, in my right hand. Much though I love Swansea, it does have an awful lot of hills  Hey, ho, climb every mountain and all that jazz….

I agree with the comments made last year in the Ouch Podcast that disabled people are treated very well on  the street in Wales. Certainly, just because I walk funnily, I don’t get the abuse I used to when in England. This has definitely improved my confidence and it means I feel able to go out and about more than I ever did before. I wonder if its a cultural thing – the Welsh siding with the underdog – perhaps because they too have not been treated well throughout history! Strange fact that it is still perfectly legal to kill a Welshman in Shrewsbury with an arrow on the first Wednesday of every month. Not sure that I’ve got that completely right with timescales and things, but the principle still exists!

When I finally passed my car on the way to my gate I thought that these trips to the supermarket on the bus won’t be for long. My driving test, though delayed through my compromised immune system (by the way, it wasn’t a cold but a roaring chest infection) will happen soon. I hope to be driving before the end of the year, so won’t be having so many of these interesting shopping excursions… HURRAH and sadness… I wonder why that is…. and perhaps I should help the dog out with some disability awareness training to relieve his anxiety!

Swept Under the Carpet…

Government has published today evidence of an increase in the number of pensioners and children living in poverty in the UK. The measure used is based on a level of less than 60% of average income. Rising utility, fuel and food prices affect us all, as everybody has to eat and keep warm. 

However, there is a major omission here. The media and Government again haven’t mentioned the Disabled in the poverty category, even though many of us, especially those on welfare benefits, also meet the criteria for inclusion in the poverty measure. The Leonard Cheshire Charity produced a report in January this year on the subject, which doesn’t seem to have warranted any comment. I was wondering why this is. Yes, there are often stories of misuse of Blue Badges and benefit fraud amongst those with a disability, but no publicity about the choices between essentials such as heating and food that we disabled also have to make along with pensioners and families on very low incomes.

The Government seems to have adopted a “let’s sweep this under the carpet” attitude because it seems enough to pay lip service to disability equality without committing resources to solving the problem. I know, with the credit crunch, money is tight, but at least acknowledge our poverty and vulnerability too and not pretend we don’t exist – we have enough of that in our daily lives despite the Disability Discrimination Act and the Equalities Commission…