The Paralympian and the Professor

I was very glad to read in this article, Tanni Grey-Thompson and Stephen Hawking, that the professor's advocacy of assisted suicide has been intelligently challenged.  Having ALS/MND like him, I'd been disappointed to hear he'd changed his mind about it, and had thought I should write some rebuttal. However I suspect her comment carries more weight and certainly will be more noticed.

One hears all too often the "I'd put my pet out of its misery" comparison propounded by the pro-euthanasia lobby, as an example of compassion. In fact, as Dame Tanni points out, it's all too likely to be the reverse, an example of objectification. Our dog, Jess, whom we like very much, is in her sixteenth year now. Reflecting on our decision to have her put down, whenever we'll choose to make it, I reckon it will based on factors such as her becoming incontinent and incurring increasing vets' bills and probably ceasing to give us pleasure. Those are all issues to do with us and our feelings and convenience and wallets. The dog has become an object - which, to be blunt, is the relation nearly every pet has towards its owner. Human beings are different.

Dame Tanni in her racing days

I suppose a physicist may be forgiven for regarding his body as no more than a sophisticated machine or computer, to switched off and scrapped when it goes wrong or no longer serves a useful purpose. But it appears that an athlete knows better.

Human beings are not merely animals or machines. They are subjects, not objects.

"So why not allow them to choose the time of their death?" I've been asked. "Why not let them say, 'I've had enough. I want to end it all'?" I hear that question, but the professor's comparison and the paralympian's answer provide part of the answer: it opens the way to the reduction of life to something we own rather than something of which we are a part. It pushes the door ajar for others putting pressure on us to euthanise ourselves, when we get messy to care for, expensive to treat, and not good company. When that becomes the way we think about ourselves then we have lost sight of the fact the life is our greatest gift, "from life's first cry to death's final breath".

(Do read Dame Tanni's article in which she also writes about Lord Falconer's approaching House of Lords' bill, his latest attempt to legalise assisted suicide, and if you have a tame peer you might write to her or him to say what you think of it.)

Squeezing the PIPs

Well, today sees the beginning of DLAs (Disability Living Allowances) being replaced by PIPs (Personal Independence Payments), the moment that disabled people on the whole have been dreading, largely because we're entering unknown territory. To be frank, none of us believe that it is not a cost-cutting exercise. We suspect that the PIP assessors will have been told to be "rigorous" (wink, wink, know what I mean?) and even given reduction targets to aim at. That impression isn't helped by reports that George Osborne refused to face Baroness Tanni Grey-Thompson, the disabled Paralympian, on TV (News report).

(Stop press: Just heard that Margaret Thatcher has died. Her PA who used to live in Stanford was an equally redoubtable woman. She found the young vicar somewhat tiresome but tolerable.)

I have just completed a survey for the MND Association which was asking about how we'd been looked after from before diagnosis and how we'd like to be cared for until we die. It occurs to me that this is at least one disability which usually is so rapidly changing that PIP assessors could no more keep up with it than the hard-pressed health and social care services. You see my brand of MND, Primary Lateral Sclerosis, is astonishingly unusual. It's over ten years since I received my diagnosis. The average life expectancy for MND patients from diagnosis is 14 months, i.e. from the time the doctor tells you what's wrong you're on this dizzying helter-skelter of losing your abilities until you die. The great thing about Disability Living Allowance was that assessing yourself with your doctor's advice you got access to a non-means-tested benefit quite straightforwardly. It was quite early on that I couldn't walk unaided, even with a stick. So I receive the highest mobility allowance, which enables us to lease a bigger car which I can get into and out of and we can fit my disability equipment in. It has considerably enhanced my quality of life.

Now imagine someone with a more normal rapid form of the disease. She's diagnosed. The PIP assessor comes round and our patient is still mobile and able to function reasonably at home, but within weeks she's losing her mobility and having falls round the house. Will the PIP fellow drop everything and come and reassess her? What do you think? Will he take her GP's or specialist's word for it? What do you think? On the present performance of assessors such as ATOS (the American multinational IT giant subcontracted by the government to assess suitability to work), it appears that on principle they discount the opinion of those who know the patient and the condition best. (See the Parliamentary Debate). As it is, I have had friends whose motability vehicles have arrived too late, and whose last months of life have been rendered harder than they were already by the slow delivery of service. Many of us fear that with the introduction of new, improved and supposedly more "flexible" system, even more will lose the crumbs of comfort to which they might have had access. And of course MND is not the only condition that involves rapid degeneration.

One after-thought: the disabled are often painted in the media and by ministers as "on the cadge". Of course you may be able to track down one rogue in a thousand. But the 999 would far rather be fit and healthy, able to live a healthy life and be able, like the Chancellor of the Exchequer, to park in disabled bays illicitly. By contrast, I know one driver with a disabled passenger who will actually refrain from using a blue badge, if the passenger is not disembarking. Integrity is not unknown among the disabled community. And what strange official mind dismisses the professional expertise of those who know best? Well, PIPs roll out in Oxfordshire in June. Perhaps then I'll be saying, "I told you so," - or will it be, "I was wrong"? It would be nice if it were the latter.