The spin put on the verdict by Dignity in Dying (formerly the Voluntary Euthanasia Society), I imagine, was that it was all about the Court saying Parliament must get on and clarify the issue (which 2 of the 9 judges said ought to be done now, 3 out of 9 said sometime, and 4 disagreed). After all Parliament has discussed it a number of times in the last ten years. In truth the judgement upheld the law as it now stands. However Lord Falconer is putting forward the second reading of a bill to legalise assisted suicide for terminally ill people on 18th July in the House of Lords. That bill would not help people in Paul Lamb and the late Tony Nicklinson's situations, as it would apply only to people with a confirmed prognosis of less than six months, but its champions are keen on it partly because it would erode the principle of the sanctity of life enshrined in law.
Recently I was asked to write a short piece for a photographic exhibition. This what I wrote.
'“Everyone knows they’re going to die one day
but society tries hard to duck it
so we need stubborn truth-tellers who will sparkle and shout
before they kick the champagne bucket.”
(Kate Fox on Kate Granger)
I imagine almost everyone who receives a diagnosis of a terminal condition experiences some moments of fear. I was no exception. I was diagnosed with Motor Neurone Disease in the same year that Diane Pretty had died in the publicity of her court cases. I was under no illusion as to what MND meant. I knew it was life-limiting and life-ending. In particular I had fears about the manner of dying I could expect. These were fuelled by the campaign surrounding such people as Ms Pretty, which portrays those with similar conditions as 'sufferers' and 'victims' and drip-feeds horror stories to the media - with the effect of exacerbating public fear.
The campaign for assisted dying/suicide feeds on and fuels our fear – our natural fear of pain, of dying, of the unknown. It destroys hope and trust. And that is toxic to society.
The disabled, chronically ill and the elderly experience another fear – of being regarded as disposable burdens. Of course there aren’t yet calls for us to be 'put down', but it's not hard to see how that might be offered as a 'treatment' – saving medical and care costs.
Don't mistake me. MND, as a newly diagnosed friend recently observed to me, is a 'bugger', as are other neurological and terminal diseases. I suppose, for that matter, most dying is too - which of course none of us avoid.
In Yann Martel's remarkable novel, The Life of Pi, the turning point for the 16-year old Pi Patel, alone with the terrifying Bengal tiger, on a lifeboat in the Pacific Ocean
comes with a discovery.
'I must say a word about fear. It is life's only true opponent. Only fear can defeat life. It is a clever, treacherous adversary, how well I know. It has no decency, respects no law or convention, shows no mercy. It goes for your weakest spot, which it finds with unerring ease. It begins with your mind, always....
'... Every part of you, in the manner most suited to it, falls apart. Only your eyes work well. They always pay proper attention to fear.
'Quickly you make rash decisions. You dismiss your last allies: hope and trust. There, you've defeated yourself. Fear, which is but an impression, has triumphed over you' (chapter 56). It's as he accepts the tiger's presence, loses his fear and starts to befriend it that he discovers his ultimately successful survival strategy. 'And so it came to be: Plan Number Seven: Keep Him Alive.'
In her blog Dr Kate Granger addresses her advanced cancer. “Being positive though, through tear-filled eyes there are also some exciting things I really want to live for on the horizon. I’m not going to let you stop me achieving those goals.”
Call us “people with MND”, not “sufferers” or “patients”. We’re not victims. There is still life after diagnosis, however short or long. It’s still an adventure. We’re not dead yet.'