Its time to start talking……

Its time to start talking……

I have read the heartbreaking news about the young man from the Midlands who has travelled to Europe for assistance with his death.

What are we to make of this – here are Libby Purvis’ excellent reflections:

Assisted dying is not the same thing as assisted suicide: we need to tread very carefully – and sympathetically

The story of Daniel James is almost unbearable. Paralysed in a rugby scrum, he made several suicide attempts and finally persuaded his parents to take him to the Swiss Dignitas clinic to end his life. At 23.

His parents have been questioned by police; what happens next is anybody’s guess. Since its inception Dignitas has left the British legislature mortally confused. Take Debbie Purdy, who has multiple sclerosis: she has challenged the Director of Public Prosecutions to state unequivocally whether or not her husband will be charged with assisting suicide (a 14-year sentence) if he takes her there, when she decides the time has come. Ms Purdy robustly says that, if the answer is yes, then she will go alone – and therefore much sooner. If he is in the clear, she can enjoy her remaining time. She deserves that clarity.

Earlier cases have produced only mutterings of “insufficient evidence” or “no public interest”, which is not enough to reassure the couple. The sooner the DPP decides, the better. Nor would this small step take us as far as Lord Joffe’s proposed Bill on assisted deaths: allowing people to take the dying to Switzerland would be a typical, and not entirely toxic, temporary fudge until Britain grows up enough to debate the issue without the usual alarmism and political cowardice.

But Debbie Purdy has an incurable degenerative disease and all she wants is permission to shorten the last painful months. Knowing there is an escape route might be so comforting that you never use it. Many terminally ill people willingly live each day, particularly if they get palliative care and comfort from the hospice movement rather than suffering in a stressed, overlit general hospital. But the law on Swiss-bound helpers must be clarified. Dignitas will not be un-invented.

However, assisted dying is not the same thing as assisted suicide. Even in Switzerland it is illegal to help a healthy but depressed person to die. There have been some troubling cases: three years ago a couple with chronic but not fatal illnesses ended their lives there, to their family’s horror; more recently a healthy German woman faked a medical certificate to do the same. In an unnerving comment the Dignitas leader, Ludwig Minelli, admitted that six clients were depressed rather than terminally ill, and said: “We should accept that when nature produces human beings there are mistakes, not only physical but mental mistakes.”

Whoa! Mistakes? The danger with euthanasia enthusiasts is that they develop an unwholesome keenness to tidy up the world by killing off those who can’t appreciate it properly. It is at this point, oddly, that Lord Joffe’s Bill becomes attractive: it applies only to the terminally ill, and if the “assistance” was taking place in the UK we could monitor it with our own values, whatever we decide those are. I doubt that Daniel James would have got his wish in those circumstances, not least because only 18 months – eight in hospital – had passed since his accident. One would wish anyone, at any age, more time to reflect: most suicide attempts in the newly paralysed (mostly men) come in the first year. They need intense support, example and information from outside the family as well as within. But even that might not have changed his mind, and legally harassing his stricken parents is in nobody’s interests.

But thinking about Daniel James, something else occurs with force. The humane creed of disability rights, with its vocabulary of challenges and being “differently abled”, may have a less helpful side-effect. It may blind us to the utter, visceral awfulness of confronting a major disability, especially when young. As civilised people we do not allow ourselves to flinch at a half-wrecked body in a wheelchair; yet the flinch and the fear are still there inside. Actually, one reason I enjoy sailing with the mixed able-bodied and disabled crews of the Jubilee Sailing Trust is that, after 24 hours of lurching about and having your hat blown off, the barrier of shyness and pity evaporates. We are all shipmates, each limited in our own way, and fine about it.

But we should not prattle on about fulfilling lives, Paralympians, Stephen Hawking and the rest if it makes us belittle the terror and self-disgust of a fit young person, paralysed. No amount of pious wittering about the Disability Community should blind us to that psychological impact.

In the early 1980s Stewart Yesner, paralysed in a car accident, founded the International Spinal Research Trust (now Spinal Research). I met some of the founders: young men crippled by their own daring in cars or sport or the military, who in an equally gung-ho spirit resolved to throw their energy into supporting research on spinal nerves. Much medical opinion strongly opposed such “false hope”, insisting that it was necessary to encourage a fulfilling wheelchair life and never speak of cure. The young men ignored this, and adopted a daring logo of a wheelchair user rising. Their work has certainly advanced – though not completed – medical knowledge on spinal regeneration. They did it with humility, knowing that the answer might come too late for them; they showed larky macho humour, undertaking feats such as the Big Push (Land’s End to John o’Groats in wheelchairs). They faced the grimness of paralysis, but shook their fists at it.

Listen to Simon Barnes, who broke his back on an assault course at 21 and then worked with the charity. On the website he describes: “A constant struggle against an excessive share of difficulties, frustration and fear… it’s tough to live with a body that only half works. You need to have an inexhaustible strength of spirit… the most painful part of being paralysed for me is missing out on the overwhelming fulfilment that comes with a loving sexual relationship; those are the feelings that help define us as human beings and often lead to the beginning of new life.”

Yet 20 years on, he concludes: “Even though I would jump at the chance to get back all the things that paralysis has taken away from me, I’m starting to appreciate that the spirit can carry us through real heavy stuff.”

It can. As the Anglo-Saxon poet wrote: “Let the spirit grow stronger, courage the greater, will the more resolute, as the strength grows less.”

But never for a second should the rest of us take shallow comfort – or rush to condemnation – by lightly assuming that every new victim should stay the course and mutate into a cheerful paralympian or a saintly philosopher. It’s very, very hard.

 

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