The law of the jungle

Here I am sitting in Cornerstone (my favourite coffee shop), enjoying a peaceful cup of coffee. I've just put up on its Facebook page pictures taken at Tuesday's friendly AGM. And now I've noticed on Peter Saunders' blog that the BBC is putting out another programme this coming Tuesday about patients in a permanent vegetative state, and my heart sank, especially when I read how it's billed: "There are thought to be as many as 5000 such people in the UK. The working party will look at concerns that assessment and diagnosis of patients is not consistent across the country and will ask whether the cost of long term care is affordable to the NHS. Ann Alexander examines calls for a reform of the process to end the life of such patients where their families believe their loved one would no longer wish to be alive. The programme reveals how some hospitals appear unaware of the law and hears how the process can be lengthy and costly, putting families under further strain"(Peter's italics). As Peter comments, the old specious euphemisms. (There was rather a witty Mac cartoon in The Telegraph on the subject.)


You can see the way the argument's running. This Monday it was, "Individuals should be allowed to choose when they die (only when their lives are unbearable, of course)." Next Tuesday it will be, "Oh yes, and did we forget to mention those who can't choose? Can we afford them? No. They're very expensive to keep. So let's put them down." The argument flows from choice to non-choice so easily, from patient's decision to family's wish so seductively. "Surely they have no quality of life?" You may remember this was something I touched on in Chapter 21 of I Choose Everything, "Compassion costs":


"With the discovery that we can have some form of communication with some patients in a persistent vegetative state (deep and long-lasting unconsciousness), one of the first questions journalists asked was whether that meant one could get an answer to the question, ‘Do you want to go on living?’ They expected, I think, to be told No, and that this would solve the dilemma of keeping comatose patients expensively alive, but the surprising truth they heard was that the vast majority of ‘locked-in’ patients (perhaps the nearest one can get to a conscious vegetative state) want to stay alive. Contrary to the account in the film, Jean-Dominique Bauby, who authored The Diving Bell and the Butterfly merely by a movement of an eyelid, did not ask for his life to be ended. Just down the road from where we once lived, in Stepping Hill Hospital is a 26-year old mother locked in her body, Michelle Wheatley, who steadfastly wants to live. There is, it seems, a deep-seated instinct to stay alive, and actually to keep alive. We don’t naturally stand and do nothing when someone tries to jump under a train. Something tells us that life is precious. We know it’s good to be alive, even when it’s hard. We value life, rightly."

Who's next? I wonder. The senile who can no longer express themselves at all? Can we afford their care costs? "No doubt they'd rather be dead." I'm sure the Radio 4 programme will have people claiming that ending the lives of deeply comatose patients is only compassionate. But I'm afraid it's not compassion. It's economics, and it's the law of the jungle, the survival of the fittest.  


I reflected on Monday on the irony of Choosing to Die immediately following Springwatch. The latter is presented by jolly, jocular personalities, full of the joys of spring and new life; the former by the saturnine Mr Pratchett, presiding with melancholy solemnity over death. Where's the link? I thought. Then I remembered the pictures of the young buzzards and barn owls who consumed their weaker siblings. "It's the way of things," Chris Packham explains in lugubrious tones. "They have to survive, when their normal food runs short or when the owls can't hunt because of the rain." It's the law of the jungle, but not the law of community. We don't live in the jungle - do we? Individualism brings death; community brings life. And the law of community is love.  

Compassion isn't feeling sorry for someone or yourself;
it's staying with them through their suffering to the very end.

Heave-ho henges

Jane was happily browsing the BBC website last night, after checking what the weather would be like for her parents in York today. "Hmm," she said, "at least that's one sensible cut the government are making! The £25 million new visitors' centre at Stonehenge." The taxpayers' whack was actually going to be £10M, with other bits from English Heritage et al; but hopefully the whole project will be scuppered. We regularly pass the collection of grey rocks on Salisbury Plain on our way to Devon. I know they're important to Druids and hippies, but I can't think they need a state-of-the-art visitors' centre. Decent loos might come in handy, I suppose. The problem is, of course, remarkable as it is, Stonehenge is so hyped that when visitors actually get there, they aren't allowed near the stones and just see some old rocks standing in a circle - and to be honest it's not that impressive (though the original achievement obviously was). And you're charged £6.90 for the privilege! What a disappointment: you've driven all the way from your hotel in London, paid your entrance fee and walked round the henge, taken your photos - and that's it!

I've often thought we should follow the French example with the Palaeolithic cave paintings at Lascaux. The paintings there are at real risk from mould, and so they've closed the caves and created Lascaux 2, the caves in reproduction, so that tourists can still see the remarkable early art in pristine condition if not in the original. Bon idée! Why doesn't English Heritage commission fibre-glass reproductions of the stone circle, put them nearby and create an open access Stonehenge 2, where visitors can wander among the stones at will? I bet it would cost a fraction of £25M, and if one were damaged, no problem, it could easily be replaced. Meanwhile if you're interested in stone circles you'd do better a few miles north in Avebury, where there's a bigger and better prehistoric monument of stones and earthworks - which you can wander around free of charge and is much more fun for children.

Anyway that was a bit of a tangent! I'm really saying that sort of cut makes sense, and I'm all in favour. However, there are cuts which I don't think any civilised government should contemplate - and those are the ones which damage the vulnerable. I don't think that the domestic model of national economies is a valid one. You know, the 'every housewife knows' sort. But certainly, if I were cutting down on our expenditure, I would cut out luxuries such as National Trust membership or Sky TV but never contemplate neglecting elderly parents or starving the children. And similarly I trust the government will not give an inch to the cut-at-all-costs brigade.

Thanks, but don't kick away my crutches!

Well, in the end we've gone for a SEAT Altea XL. Following our son's advice we avoided a light colour "because they look fat" and chose dark blue. The car met all our criteria (such as adjustable height on both front seats), except for passenger seat arm-rests, but it felt gemütlich, as far as a car can, I suspect because it has resonances of our favourite Skoda Fabia. And certainly Jane enjoyed test-driving it, nice and smooth. Above all, it's about as green as you can get with an MPV at the moment - which gives an illusory sense of virtue about what remains basically a polluting activity.

By the way, we're able to consider a car like this as an option because my Disability Living Allowance - which is a non-means-tested allowance for the severely and moderately disabled. I receive the middle band living allowance - which helps fund the extra heating and care costs (like clothing) which being disabled necessitate - and the top band mobility allowance from being unable to walk on my own. That all goes on the excellent Motability scheme, which is a three-year lend-lease arrangement, where the allowance is used up to finance everything except fuel. When I began to receive it, it felt like a real blessing, some compensation for the increasing restrictions that come with being disabled. I'm grateful  not to have to wrap up under blankets with my mittens on, because I'm worried about putting on the fire. And I'm grateful to be able to choose and run a car which I can still use.


There may be some malingerers taking advantage of the benefits' system. But it would be a major blow for the genuinely disabled if this were taken away under the "inevitable austerity measures" for which public opinion is being softened up. It feels a bit like those fabled schoolmasters who, as they raised their cane high above their victims, promised, "This is hurting me as much as you, boy, believe me!" We didn't believe them. It's patently not true.


Today the post brought the first taste of things to come. As you may remember, I have a through-floor lift which enables me to go to bed upstairs. As I recently commented, thanks to my wonderful Occupational Therapist I joined the County Council's lift service and maintenance contract free of charge. And thanks to that I have been rescued a couple of times and been able to sleep in bed at night. The letter is headed: "Re. Proposal to discontinue Oxfordshire County Council's Servicing, Maintenance and Repair Contract for Stair Lifts, Step Lifts and Through Floor Lifts" (Why so many capital letters, I wonder?) You can see exactly where this "consultation" is going.

What the so-called County Council cabinet won't see is the number of disabled and elderly people who get stranded either upstairs or downstairs, out of reach of toilet, bathroom, or kitchen - because it's clear that it's a question of when, not if, they discontinue this service. One question in their document is "Do you think you would arrange a private contract if the council's was (sic) discontinued?" Note the word "arrange"! "Purchase", I think they mean. Two snags occur to me: some people simply could not afford it; and individuals with their own contracts can never have the same clout as a major client such as a county council. That means we get either no service or inferior service. I sincerely hope that the users, their carers and everyone who cares about them protest loudly - and that I'm wrong about it being a foregone conclusion.