On a personal note

I'm sure I'm not alone among people with MND in being amazingly grateful on a significant day which after diagnosis I'd never expected to see. Our 40th wedding anniversary, which we celebrated a week ago, was one of those big days. All our family made it home for the big day. When we returned from church, there was a brand new pergola built in the garden awaiting us, with a rose and honeysuckle to go with it. A celebratory lunch with a rather fine wine followed.  

The week continued with a cream tea on Monday, a barbecue on Wednesday, and going to the ballet in London on Saturday. The last proved quite an adventure as we hadn't factored in an anti-Israel demonstration (no comment) which closed off all the roads from the A4 (which we were on) to Theatreland and created a tailback all the way to the Hammersmith Flyover (5 miles from our destination). Our satnav gave up the struggle, wanting us to continue the way we were heading, and so, with an hour and a half in hand, we made for the south - only to find Putney Bridge closed for repairs! 

The long and the short of it is, having crossed south of the river, we made reasonable progress and arrived at The Coliseum a mere half hour late! There, at last, we found ourselves treated wonderfully well, whisked into a box in time to see the tail end of Act 1 and all of Acts 2 and 3 of Coppélia, which was great fun and lovely music. I must say that the staff at the theatre were consideration personified - and the facilities first-class. The ballet's going on tour in the autumn (the English National Ballet) and, if that's your sort of thing, I recommend it. It's a very optimistic production, beautifully but not fussily danced.

One more recommendation if you're looking for somewhere to eat in the Trafalgar Square area, try the St Martin's Crypt - accessible, atmospheric, reasonably priced and not too crowded. Our good friends from Wimbledon took us there after the performance.

And in case you're wondering, the journey home was a breeze - well, for me. Jane of course was driving, and I have to say she's a match for any London cabby!

Post Falconer

I've not commented on the non-vote on the assisted dying bill in the House of Lords on Friday of last week. I have quite a bit of faith in the peers who will scrutinise the naivités of Lord Falconer's bill at committee stage, especially the likes of Baroness Finlay and Danni Grey-Thompson. I'm indebted to Ann for a link to Care not Killing's overview of post-debate comments - which say it all. http://www.carenotkilling.org.uk/personal-stories/voices-against-assisted-dying/
Voices against 'assisted dying'

more: Personal stories, Medical Opinion, Personal stories/Medical Opinion, Opinion, Personal stories/Opinion, Falconer Bill, Personal stories/Falconer Bill, Disability, Personal stories/Disability

25th July 2014

The second reading of Lord Falconer's Bill caused people from all walks of life to explain why Lord Falconer's Bill would hurt them.

Among the many positive outcomes from the second reading of Lord Falconer's 'Assisted Dying' Bill was the steady stream of individuals sharing their personal reasons for opposing the Bill, from disabled and terminally ill people to carers and doctors. Here are just a few of the voices which have cried out against unethical, uncontrollable and unnecessary legal change.
We were among a number of newspapers and websites to publish the testimony of the late Christopher Jones, whose experience of despair when terminally ill caused him to reflect towards the end of his life on the valuable protection given him by the law; his widow Jenny shared her perspective in the Guardian alongside Dr Ian Basnet, who is tetraplegic. Similarly, we shared Matthew Schellhorn's account of caring for his terminally ill mother and his gladness at not having had to discuss the substance of Lord Falconer's Bill with her.
Disabled people, especially under the auspices of Not Dead Yet UK, have been at the forefront in recent weeks. The Times (£) interviewed 'Britain's best-known disabled actress', Liz Carr, who said 'some on my own medical team have underestimated my life expectancy. It is very common for someone with a disability to be told they are not likely to live until a certain age — and for them to carry on living.' Disabled blogger 'Spoonydoc' noted that few people acknowledge the inconsistency between supporting 'assisted dying' because of the experiences of people like Tony Nicklinson - who would not have qualified - and at the same time claiming that the Bill is closely defined and not open to extension. Hannah, who has inflammatory bowel disease, pursued a point also made by Spoonydoc: it is often wrongly assumed that those who oppose a change in the law have insufficient awareness or experience of these issues and would change their minds if they had.
In an engaging exchange, MND sufferer Pam and her friend Sian considered that a 'choice' like 'assisted dying' would put people in a 'constant position of having to say no. What we need is support for living, not support for dying', while Penny Pepper, writing in the Guardian, challenged readers by asking them to consider how their reaction to her suicide bid at 19 changes when they know that she had suffered from a chronic illness since childhood. Colin Harte, who for many years acted as carer to his friend Alison Davis, spoke to ITV (1m13) on a similar theme, picking up on the weakness of prognoses and people's ability to find purpose, value and hope in life - endangered by Lord Falconer's Bill.
Paralympian and crossbench Peer Tanni Grey-Thompson featured across the media, including the BBC (video), New Statesman and Telegraph. She noted that despite her many successes, 'people come up to me and say "I wouldn't want to live if I was like you".'
Composer and fellow Peer Andrew Lloyd-Webber discussed the point at which his mother had expressed a will to die - convinced that she had become a burden - five years before eventually dying of cancer, and his own battle with depression during which he 'actually got the forms for Dignitas. With hindsight, it was stupid and ridiculous, but I couldn't think what to do.' Fellow member of the Lords and senior palliative care physician Ilora Finlay spoke about her and her mother's experience, similar to Lloyd-Webber's and doubtless to countless others around the country - her mother, four years before her death from breast cancer, considered herself to be a burden but with love and support, she rediscovered her own value and enjoyed 'among the best [years] of her long life'.
Caring for thousands of patients over a career will give healthcare professionals a unique insight into the reality of dying, but many will also have personal experience of serious health issues. As GP Dr Mark Houghton told the Yorkshire Post, 'I am in the strange position of being a doctor who has known what it's like to be made miserable - suicidal even - by chronic pain.' Baroness Hollins, past president of the British Medical Association and the Royal College of Psychiatrists, spoke in the course of a tour de force for the Daily Mail of a friend with motor neurone disease who confided to her shortly before death of how precious his final months had been - having said six months before that he would gladly take a legally prescribed drug.
Lady Hollins was writing in part as a counterpoint to former Archbishop of Canterbury Lord Carey's recently declared support for a change in the law, and his views were soon shown to be out of step with those of serving faith leaders. The Bishop of Worcester, John Inge, wrote movingly in the Guardian about his wife's battle with cancer which caused her death at the age of only 51, and explained why he was glad that the 'choice' of assisted suicide had not been available.
The chief rebuttal to Lord Carey came from current Archbishop of Canterbury Justin Welby, whose unambiguous denunciation in the Times (£) of legislation which would cause a 'sword of Damocles' to hang over seriously ill patients was in part informed by the deaths of both a friend and his own child. Archbishop Welby was one of 24 faith leaders to sign what was described asan 'unprecedented' message to Peers calling for the Bill's rejection.
Another signatory, Chief Rabbi Ephraim Mirvis, wrote in the Telegraph that while he appreciates 'the honest and empathetic intentions that have led Lord Falconer to propose, and others to support, the Assisted Dying Bill... Jews are particularly sensitive to the moral dangers of euphemism. We have seen prejudice cloaked in principle, bias masquerading as high-mindedness...'
Such concerns bring us full circle, back to those of disabled people who have been so prominent in speaking out against this Bill. Disabled inclusion activist Simon Stevens wrote in theHuffington Post that the Lords' handling of this issue and the weight they give to such proposals' flaws 'is a test to see how serious the country is in relation to the full inclusion of disabled people as equal citizens'. We agree, and we hope that people will continue to speak out in the months to come.

Watch vox pops from the rally in Westminster

The ex-archbishop and the disabled

George Carey was the last but one archbishop of Canterbury. He hit the headlines on Saturday by performing a volte-face on assisted suicide in an article in The Daily Mail. Some speculated that it was a deliberate attempt to steal the thunder from the present incumbent who was about to achieve a notable break-through in the matter of welcoming women bishops without splitting the Church of England. I don't subscribe to that view. I believe, though I've never met him, that Lord Carey is well-intentioned.

I understand that he can be stubborn. However I do wish he had listened what the disabled community is saying. Not Dead Yet sums it up simply.

"The key messages we want to get across are

• We are deeply concerned that a change in the law will lead to disabled people – and other vulnerable people, including older people - feeling under pressure to end their lives.
• The issue tells us a lot about public attitudes towards disabled people.
• Why is it that when people who are not disabled want to commit suicide, we try to talk them out of it, but when a disabled person wants to commit suicide, we focus on how we can make that possible?
• We believe that the campaign to legalise assisted suicide reinforces deep-seated beliefs that the lives of sick and disabled people are not worth as much as other people’s. That if you are disabled or terminally ill, it’s not worth being alive.
• Disabled people want help to live – not to die."

I was sufficiently disturbed to send him an email. I'm not surprised that I've had no reply, but I don't like to waste my efforts. So here, suitably edited, is what I wrote.

Dear Lord Carey

No doubt you are receiving a blitz of correspondence at the moment!  But I hope you will take time for this one.

I'm the youngest son of your predecessor but one at St Nick's in Durham, John Wenham.  Indeed I was born while he was vicar there.  Now I have Motor Neurone Disease (PLS variant).  I don't know how long I have to live, but know the sorts of things that lie ahead for me and my family.  I am now utterly dependent on my wife for my survival and for my day-to-day needs.  

I have consistently admired your doughty defence of the Christian values underpinning our society.  So I was sad to hear on the news last night of your intervention in the assisted suicide debate.  Clearly I don't know what Damascene experience you had to change your mind, whether it was meeting Tony Nicklinson or other experiences in your pastoral ministry.  When I met Tony Nicklinson for a morning, I came away immensely saddened that he was unwilling to recognise the love with which he was surrounded, both from his wife and daughters and from his carers.  His life was limited, but it had great value - as does all life.  Of course, neither he nor Paul Lamb would have been helped were Lord Falconer's bill to pass into statute, with its attempted safeguards.  That would come later if Lord Falconer's Commission on Assisted Dying saw its implied conclusion fulfilled: 'we do not consider that it would be acceptable to society at this point in time to recommend that a non-terminally ill person with significant physical impairment should be made eligible' (emphasis mine).  As a terminally ill person with significant physical impairment but with hopefully more than six months to live maybe I'll be next in line.  You cite Tony and Paul as evidence for necessary change.  Would you want to legislate also for cases such as theirs?

In your article you write movingly about our Lord's compassion for the suffering around him.  However I see him only offering healing and enhanced quality of life to those he met, never death.  Can it be the Church's role to advocate suicide instead of care to the end?  Isn't that what compassion really means - suffering alongside?  Would Jesus ever have abrogated the sixth commandment, which means, I understand, killing intentionally or through carelessness or negligence?  It seems to me that we are much more faithful to Jesus when we are involved in healing diseases and in palliative care.  

I don't doubt that Lord Falconer, the folk at Dignity in Dying and yourself are motivated by pity for those in pain, which is of course good. But there is also a strong agenda for personal autonomy, the right to choose.  As Terry Pratchett put it, 'My life, my death, my choice.'  Life, and death, is more than that though, isn't it?  Rights go with responsibilities.  If my insisting on my right endangers others in any way, then I must forego my right. 

I could write more about the ambiguities of the 'safeguards' in the bill, but I will simply urge you to hear the voice, in the debate, of those who see the dangers of opening this particular door for the disabled, the elderly and powerless vulnerable.  I hope you might consider, if not voting against the bill, abstaining and recommending an official royal commission to consider all the issues of end-of-life care, before the pressures of austerity and emotion push us into a position which we later come to regret.

Yours sincerely 

I was chatting on line to psychologist friend yesterday, and she said: "These things occur to me: 1. Many psychotherapeutic approaches theorise about the threat to our sense of self posed by death (a threat which exists regardless of our physical health state). It seems to me that this Bill is actually an unconscious response to this fear (dressed up as something very different!). However, in my experience, avoiding and bypassing fear will only increase it. This, I think, is the connection to 'the slippery slope'; 2. It is premised on something falsely believed to be absolute (6 months' prognosis); 3. It does not, as you point out, provide an understanding of the complexity of informed consent which is so dependent on many factors...social, societal, emotional, physical, intellectual etc...." Nicola's first point was new to me and rings true. Trying to avoid the fear of death by bypassing it will only reinforce it.

The Bill is debated on Friday. I guess that's the time for all the faithful to get praying and all the mobile to get protesting.

Finally something I heard yesterday about our approach to suffering: "Pain is inevitable; misery is optional." We don't have to choose misery and pessimism whilst facing the reality of pain. 

What's wrong with the Falconer Bill?

On Sunday I was asked for my views on ex-archbishops endangering the lives of disabled and ill people. Well, it was the World Cup and I needed a day off; so I promised something on Monday. (Sorry - missed my deadline!) And this, I hope, will be it. Actually rather than knocking two well-meaning old codgers, I think I’ll write about about Lord Falconer’s deceptively innocuous-sounding bill on “assisted dying” whose second reading takes place in the House of Lords on Friday.

It’s summarised in Parliamentary business papers as “A Bill To enable competent adults who are terminally ill to be provided at their request with specified assistance to end their own life; and for connected purposes.” 

A commentator summarised its contents like this: “His bill would make it legal for doctors to help mentally competent adults with less than six months to live to kill themselves. Two doctors would need to agree that a patient met the criteria and the option would not be open to minors, people without mental capacity or those who are not terminally ill.

“The final step would involve a doctor (or nurse) hand-delivering lethal drugs to the patient at a time and place of their choosing and staying with them while they took the drugs and until they were dead.”

I’m indebted also to Peter Saunders for the following three headings. He is not to blame for the comments thereafter, which are mine.

It’s unnecessary

The law

The present Suicide Act makes it illegal to aid, abet, counsel or procure the suicide of another, or an attempt by another to commit suicide, with a maximum penalty of no more than 14 years in gaol. The law is hedged round with safeguards such as prosecutions being carried out only by the Director of Public Prosecutions (within compassionate guidelines) and all the processes of jury trial and appeals. The law as it stands enshrines absolutely the protection of life, but allows the leeway of public interest and compassion, in other words, Portia’s principle of justice and mercy. The fact that in the 53 years since the Suicide Act was passed there has been no contentious court case is evidence that it’s not a bad piece of legislation.

End of life care

An aunt-sally propagated by the assisted-suicide lobby is that at present many doctors in fact covertly kill their terminally ill patients. I think they refer to the double effect of ceasing treatment or administering drugs with the intention of mitigating symptoms and alleviating pain. There is a category difference between that intervention and what the bill proposes (from understandable motives). A doctor friend of mine commented yesterday:

“Desmond Tutu, as quoted..., is completely misunderstanding the issue of assisted dying and my worry is that the bill will be passed based on these misunderstandings.

“Scenario 1) A person is terminally ill. It is their time to die and further treatment is futile and unnecessarily prolongs suffering (e.g. Repeated courses of chemotherapy, or the intensive care treatment of Nelson Mandela described in this article). We don't need a change in law for this. We need sensible, compassionate care.

“Scenario 2) A person is terminally ill and has a 'settled wish' to die. Two doctors therefore agree to end that persons life by way of administering drugs. This is what the bill proposes.” 

The accusation that palliative care specialists intend to kill their patients rather than ease their last hours has to my mind a hint of malice about it. 

Hippocratic oath v necessity

Nursing = caring

As I understand it, the aim of the bill is for health professionals (such as doctors and carers) to be allowed to take someone's life or to assist in their suicide: so for example allowing my doctor to administer a lethal injection at my request. That opens the door to doctors ceasing to be healers and carers, and becoming dealers in death. That is one of the most valuable safeguards in the DPP's Guidelines on Prosecution in respect of Assisted Dying, preventing health professionals helping someone taking their own life. I guess that's why the BMA is against a change in the law. As events proved, in Tony Nicklinson’s case for example, there was no necessity for a doctor to end his life. He could refuse treatment and ask for only symptom control and pain relief.

It’s unsafe

The bill itself

There are many aspects of the bill itself which are glaringly unsafe. For example the six month cut-off point: as any honest doctor will admit, such a precise prognosis is notoriously hard to make - witness the case of the “Lockerbie bomber” Al Megrahi being released having been given three months to live by the country’s leading cancer specialist, Professor Karol Sikora, and enjoying another three years of life back home. I know a number of people, such as the late Alison Davis, who are profoundly grateful that an early exit was not open to them, since they went on to live many more years of fulfilled life. For example the assessment of mental competence and settled desire simply by two doctors. There is no specifying of who the doctors should be, what their qualifications should be (for example psychiatrists). Presumably they would be doctors in favour of assisting death, and the prospect presents itself of the situation emerging in Holland of mobile euthanasia clinics with a couple of doctors ready to sign the necessary papers on board. For example, the requirement of informed consent. Does that mean being given a leaflet about local hospices, or palliative care packages? In my experience there’s no real alternative to visiting and staying in a place where you can experience care from the real experts.

Its implications

The proponents of assisted suicide often pillory the idea of a “slippery slope”. But experience shows it is unwise to do so. The Benelux countries and Switzerland (the only European nations with voluntary euthanasia) have witnessed a steady relaxation of the safeguards originally in place there. In the two US states where assisted suicide exists the number has steadily increased. Times of austerity (like the Depression of the 1930s) have seen a rise in euthanasia - see “Action T4” in Wikipedia (http://en.wikipedia.org/wiki/Action_T4). Disturbingly one can hear hints of this in Desmond Tutu’s “But why is a life that is ending being prolonged? Why is money being spent in this way? It could be better spent on a mother giving birth to a baby, or an organ transplant needed by a young person. Money should be spent on those that are at the beginning or in full flow of their life.”

Peter Saunders’ comment is pertinent. “The right to die can so easily become the duty to die and the generation that has killed its children through abortion could very easily become that which is killed by its children through euthanasia and assisted suicide. Add in economic crisis, debt, cuts in health and welfare and the argument gains force by playing on popular prejudice against those perceived to be a drain on families and the state.”

Lord Carey cited cases of permanently disabled people to explain his change of mind. Yet they of course are not covered by this bill. One see how inevitably the argument will be, “Why not these people?” “And why not teenagers younger than 18?” “Why not those with a longer-term terminal illness? Those with a chronic painful condition?” And so euthanasia is upon us. Disabled campaigners such as Tanni Grey-Thompson and Baroness Jane Campbell are clear in warning of this danger.

A further real danger is that of the disabled and chronically experiencing explicit or implicit or self-generated pressure to ask for euthanasia. Personally I think the last is the most likely, as the disabled, chronically ill and elderly seek to alleviate the expense and anxiety of those who care for them, whether family or state. And it would also be naïve to underestimate the amount of elder abuse in this country.

It’s unethical

Compassion

Stephen Hawking who like me has a rare form of MND not long ago propounded what I call the “pet theory”. It goes something like this: we have our pets put down when they’re suffering. Surely people deserve better than that? However it’s also true that we have them put down because they become incontinent, because their vet bills rocket and because, to be blunt, they’re no longer afford us pleasure. In other words, it’s more about us than the pet.

Compassion, it seems, is often confused with pity. The true and original meaning of compassion is to suffer with, to stay with someone in their pain and darkness. It doesn’t mean to put them out of their misery; it doesn’t mean concurring that their life has lost its value; it doesn’t mean euthanising them. That’s a cheap imitation of compassion. True compassion is costly emotionally and often financially.

Investment in universal best palliative care is the true expression of compassion, not the offer of a cocktail of barbiturates, which is a perversion of therapy. 

Defence of the vulnerable

"You are not a burden."

Another mark of a civilised society is its attitude to the weak and vulnerable. Eugenics gained traction in the early 20th century, wanting to produce healthy strong and racially pure men and women. The weak went to the wall. I'm not concerned for myself - although I don't look forward to the process of dying - but I am concerned for the vulnerable, the disabled who don't have a voice, for the elderly who are at risk through dementia or frailty - for those who are increasingly regarded as a burden on their families, on society, on our nation's resources. It's those people our laws should protect. Ironically Lord Falconer’s bill seems to me to be about people who are far from vulnerable. It’s about determined people concerned to maintain control over their lives come what may.

Rights

Rights only come with responsibilities. My right to life, or to death, can't be isolated. If my demanding the right to die endangers the lives of others, then my responsibility to them trumps my choice. You can’t have a community, you can’t have a society where each person insists on his or her rights. Rights, in my view, are not possessions. They are what we afford each other. The danger of this legislation is that it begins to remove the right to life of the many to accommodate the right to choose of the few.

Value of life

Neither is life a possession. Life is bigger than us. We are a part of life. We are granted a share in the adventure which is life. In financially straitened times, such as we are told we are now in, there is a real test on the horizon: what do we value more - money, or life? That will be the measure of our society. I know what I would prioritise.

The value of life was long ago encapsulated in a simple principle, “You shall not murder”, a word which includes intentional killing, and also from carelessness or negligence. In other words life, of whatever perceived “quality”, is precious and to be protected.

Lord Falconer’s bill, well intentioned though it may be, is in my view unsafe and opens the way to consequences which, though denied, are entirely logical extensions of the breach in this principle. 

An honest video testimony

Almost a year ago I met a gay Christian. It was not the first time that I'd met gay Christians by any means! However this encounter was crucial in the evolving of my views on the subject, as readers of this blog will be aware. I realised that it was my problem, not hers. People like me were the ones who inflicted pain and alienation on people like her, who left no room for her to be who she was in the family of the Church. My deep regret for that is why I now recommend things which help both gay and straight people hear each other.

A twenty-year old student and a sketch pad on a beach. Using simple cartoons, he recounts his upbringing as part of a loving Christian family. He goes through the usual children's and youth groups which are part of most churches. It is one evening at the youth group, that he plucks up the courage to raise a question that's been troubling him. He poses it about "a friend". "I've got a friend, and he's gay. What do I do?" After an awkward silence, he is told in no uncertain terms: "YOU CAN'T BE GAY AND CHRISTIAN". And of course he is his gay friend.

This is the beginning of a short documentary made by James Lawbuary called A Video Testimony, described as "The story of a simple man who was changed by an almighty God". Almost the entire film is shot over his shoulder as he vividly recreates his struggles with the tension created by the dogmatic assertion, which bore no gainsaying. His experience echoes that of many in his position - many tears, many prayers, isolation and alienation from any faith he had. I won't to spoil the plot, but the change of the tagline takes place unexpectedly on a beach one evening on a church weekend away. It is a dramatic encounter with Jesus himself who speaks to him. 

Only at the end of the film as James packs up his art equipment does he turn round and we see him walk away. It is as if he has found resolution and found himself. And we see him as a person, an ordinary young man like anyone else, and like everyone else made "in the image of God" and loved by Christ - as he is.

What is impressive about this film is its transparent honesty and its understated conviction. It has a lovely statement of the God's universal good news at its heart. Watch it here: A LGBT Video Testimony. I thoroughly recommend it. 

Competing at school

Thanks to my grandfather's accounting acumen, my father's vocation and a pinch of native wit, I was fortunate to receive a privileged education. My secondary school was one of the better public schools, Clifton College. It happened to be situated opposite Bristol Zoo. I had to remember to turn left rather than right along Guthrie Road on my way from home. The school owned a great deal of real estate in this exclusive residential area. Strikingly, much of it was playing fields and sports facilities.

Around the main school buildings was first Collins' Field where the highest score ever made in cricket (628) was scored by one A E J Collins in 1899. I used to pass the plaque on the back of the brick air raid shelter commemorating it twice a day. Then came The Close, the huge cricket field (rugby in winter) where the main matches were played. When school matches weren't on there was room for a number of practice games and nets on the expanse. But that wasn't all. A few blocks away there was New Field, smaller, but including a pitch, athletics track and pits, and three squash courts. Elsewhere on the premises were some fives courts, tennis courts, a rackets court, a small heated swimming pool and a large open-air pool. But that wasn't all. There was also a fleet of four (or five) coaches to transport us across the famous Clifton suspension bridge to Beggar's Bush, a prairie of pitches for practice and minor matches. Now on this site, I believe, are floodlit and all-weather pitches. And of course the school had its boathouse on the river towards Bath where the rowing took place.

Why do I bother to tell you this? Not because it made me a great sportsman. It didn't! But to point out what a fatuous criticism Sir Michael Wilshaw, head of Ofsted, made about sport in state schools. I think he blamed headteachers' failure to encourage competitive sports in their schools for there being a disproportionate number of élite athletes from independent schools. I have a long enough memory to recall state school playing fields being sold off for development by government edict, to make some money. Independent schools by contrast have bought property. Of course state schools would love to have facilities comparable to public schools', which would enable far more practice and far more competition. However it's more a matter of resources than will.

And by the way, Sir Michael, how many of our top footballers are public-school educated? I can think of one. Or perhaps you don't rate football as a sport.

Court discussions of life and death

I know it won't be the end of the story, but I was pleased, if not surprised, on Wednesday that the Supreme Court dismissed the appeals of Paul Lamb and Jane Nicklinson and upheld the DPP's appeal against "Martin's" demand for more definition about assisted suicide. Having met him I am aware of how painful and frustrating Tony Nicklinson's life had become, but demanding an effective change in the law to enable doctors to end life, in other words to legalise euthanasia, would be in my view to open the door to a world of danger to vulnerable people of all ages.

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.'