Disabled activist, actor and comedian Liz Carr has chosen the spectacular world of musical theatre as the backdrop to exploring the complex and controversial subject of assisted suicide in her new show Assisted Suicide: The Musical.
On September 11th 2015, MPs voted overwhelmingly against legalising assisted suicide. Opinion polls would have you believe that the majority of the UK population believe it’s a humane choice to legalise assisted suicide for terminally ill or disabled people but Liz and many other disabled people disagree.
Confronting the lack of creative work exploring this most topical taboo, she is joined by director Mark Whitelaw (Duckie, Ursula Martinez, New Art Club), composer Ian Hill (Duckie) and a cast of performers to express an important but often unheard perspective.
Here are further details of dates, times and venues
Assisted Suicide: The Musical Written by Liz Carr Director Mark Whitelaw, Composer Ian Hill,
Ahead of the premiere at Unlimited Festival at the Royal Festival Hall on September 10th and 11th, (http://unlimited.southbankcentre.co.uk/events/assisted-suicide-the-musical) we warmly invite you to the preview of Assisted Suicide: The Musical by Liz Carr.
Chats Palace, London, Friday 22 and Saturday 23 July , 7.45pm. £12/8 (concession)
Colchester Arts Centre, Wednesday 27 July, 8pm. Pay What You Can Afford.
You may already be aware that at their meeting on the 21st of June 2017 the BMA voted by 198 to 115 to continue their opposition to assisted suicide. While this provides some comfort to us, we must not lose sight of the fact that those who want to change the law continue to use every device available to them to resurrect the debate. Baroness Meacher recently reminded the House of Lords that problems associated with assisted suicide as set out by Supreme Court *are still not fixed” and there is yet another call for a Royal Commission.
In a recent article in the Guardian Newspaper http://bit.ly/29xHVaf the Kings Fund suggests that we should look at the evidence coming out of Oregon and the Netherlands which indicate that there has been a major increase in the numbers of people using assisted suicide. Linking this to the BMA’s recent decision, the article points out that in Oregon, “There is “doctor shopping”, whereby people whose doctors won’t participate in assisted dying (and two out of three won’t) seek lethal drugs from other doctors who are willing but have never met them before and know nothing about them beyond case notes. One such doctor issued no less than 27 prescriptions for lethal drugs in 2015 alone”.
The article also makes the point that is better to learn from other people’s mistakes than from your own.Very good advice!
Translated in 1953 by CV Malfatti
So after the initial brew ha that followed the premiere of the film Me Before You the battle to protect the rights of vulnerable disabled people goes on. Those who campaigned so vocally at the premiere deserve our thanks and it seems their efforts attracted a great deal of mainstream and social media attention. Catherine Garrod, a NDYUK supporter, posted a Twitter update showing that our protest attracted 2,300 retweets, 1,900 likes, 236 replies 404,200 impressions, 11,800 visits to our profile page (up by over 1000%!) 837 mentions in the past 2 weeks. Our top tweet received 178 retweets and 20,000 impressions. So the word is getting out there!
Alison Wilde a Senior Lecturer at Leeds Beckett University, whose research is centred around on screen representations of impairment and disability, with a focus often placed on gender and audience interpretations has posted an interesting and informative piece about the film. Alison Wild Blog
Alongside all of this the recent decision to allow assisted suicide in California reminds us all that the fight must continue. Kathleen Palmer, an opinion writer for the Washington Post, in her piece “Freedom to kill, permission to die” writes “Perhaps I read too many dystopian science-fiction novels during my formative years, but there’s something disturbing about asking doctors to help their patients die.” you can read the complete article at Freedom to Kill Permission to die
The latest blockbuster to come out of Hollywood called ‘Me Before You’ is seen as a gross misrepresentation of the lived experience of most disabled people. The film is based on the best-selling novel of the same name. A young man becomes disabled, he falls in love with his ‘carer’ and they have a fantastic year together but despite her protests, he decides to end his life at Dignitas so she can move on and he is no longer a burden to her.
A critique of the book by Crippled Scholar can be found at http://bit.ly/25bbRf6
Not Dead Yet UK is deeply concerned to see yet another film which casts non-disabled people as disabled people and shows the lives of disabled people as not worth living.
The film premiered at the Curzon in Mayfair at 7pm on the 25th May.
Further coverage of the protest and concerns around the film:
This film did not raise the issue of medication intake and cost of medication.
In the past few days, there has been a flurry of posts on Twitter and Facebook alleging that Not Dead Yet UK are in league with faith groups or their organisations. This old chestnut, like so many others, is factually incorrect. We have certainly worked alongside other campaigners some of which are faith groups when lobbying against a change in the law on assisted suicide. We have always made it clear that our relationship with these other groups does not mean that we support their values or agree with their position on a range of other issues. Some supporters of Dignity in Dying are accusing us of supporting anti-gay propaganda. This is entirely untrue and absurd in the extreme.
These are worrying times for disabled Canadians and those with life-threatening conditions. The Canadian government is discussing enacting legislation which will allow assisted suicide. We’ve posted a couple of links to keep you updated on the situation
There is some good news! An attempt to allow assisted suicide in Maryland in the USA has failed after a concerted campaign against it. Campaigning clearly does help. Senator withdraws Assisted Suicide Bill
As many of you will know our very own Liz Carr is in rehearsals for her exciting new show Assisted Suicide: The Musical.
This is a must see and you can book tickets by visiting Assisted Suicide:The Musical
On 10th February, the BBC aired a disturbing documentary entitled “How to Die: Simon’s Choice”. The documentary followed Simon Binner a 57-year-old with motor neurone disease in the months before his assisted suicide at a Swiss suicide clinic last October.
The disturbing documentary has rightly been criticised by Care Not Killing, who said that it “risks skewing what people think about assisted suicide and sidelines alternatives, such as hospice and palliative care. It gives the impression that if you’re disabled or terminally ill your life is somehow worthless and you should kill yourself. Suicide is the biggest killer of young men in this country and the more it is normalised, the more people will think of it as a way out”.
This programme was yet another example of disability portrayal which promotes the idea that death is preferable to being disabled. There is nothing new in this; the film industry has been trotting out this message for years, who can forget Born on the 4th of July with Tom Cruise!
Dominick Evans a wheelchair user, who describes himself, as an “activist, filmmaker and speaker” has recently published an interesting article which discusses disability portrayal and assisted dying.
Dominick a New Yorker says, “I believe that if Hollywood showed more disabled actors, particularly wheelchair users, who we never see, and the stories were more reflective of the disabled experience, then people would believe disabled lives were worth living. There is a huge difference between a debilitating illness, such as brain cancer, in the end stages, and a person with a disability who is not dying. You can find success, love, fulfillment even if you happen to use a wheelchair. It is not the end of the world, and these films need to stop scaring people into thinking it is. We cannot change the narrative about disability when these kinds of films continued to be made”.
You can read the full article “Hollywood promotes the idea it is better to be dead than disabled” by clicking here Dominick’s artcle
As you know our dear friend and colleague Kevin Fitzpatrick passed away on Thursday the 14th of January. His funeral will take place Friday 29th January at 9.30am a mass will be held at Our Lady Star of the Sea Mumbles Swansea followed by cremation at Margam Crematorium Port Talbot at 12 noon.
Below we have posted tributes to Kevin written and posted by his many friends and colleagues.
Messages from Commissioners who served with Kevin on the Disability Rights Commission
“We will all miss you, Kevin. A stalwart in the fight for the dignity and rights of disabled people, as well as a fine colleague at the Disability Rights Commission and more generally. . And with whom can I now also have good humoured but stimulating conversations about Wittgenstein, beer and Manchester United? A very sad loss. Bob Niven”
This is sad news indeed. When I last spoke to Kevin he thought he was in remission. He was a remarkable man who had a remarkable journey. He became disabled through a stray bullet when he was in Northern Ireland. He worked for the Shaw Trust but left because he disagreed with many of their policies. When he joined the DRC he had limited campaigning experience but what a campaigner he became! He brought his intellectual rigor to the DRC and we all benefitted from that Ludwig Wittgenstein will never be the same! In his academic career he worked on the assessment of employability of disabled people but thought there was a negative hidden agenda and moved on. He was right, of course. He was always a man of principle. And of course in recent years he has had an international profile in raising the case against assisted suicide. Yet again his intellectual power combined with his humanity made him an excellent advocate. He did this while coping with his cancer. Had he survived I think he would have added to his list of achievements. He will certainly be missed.
I have really admired Kevin’s intellectual capacity, and the deep thought he put in to the arguments he made for or against issues. He struggled valiantly to help me understand Plato’s philosophical teachings, to assist me with my course. That was so typical of Kevin, because he helped so many people in a quiet unpretentious way. I remember his humanity when talking to him about many of the campaigns and issues he pursued, always thinking of others challenges and only sharing his own with a chosen few because he was a private man in many ways. Finally, I smile when remembering chewing the fat with him one night at the Novotel in Euston, in the DRC Commission days, something about the battle of the Boyne, the Irish rebellion, etc. Kevin decided to have a cigar with his malt whisky, and when presented with a large tray of hugely expensive cigars, he chose what he thought was the cheapest one, just £7, and nearly fainted when the bill came and he had missed a 3 and the cigar was £37! He said he would have smoked it more slowly if he had known.
I remember and treasure Kevin’s kindness and generosity to me when I joined the DRC and his efforts to ensure that I was always included in discussions outside of the meetings. He will be sadly missed by his friends and family but also by disabled people for whom he fought so valiantly. Susan Daniels
I will long remember the enjoyment he had in his philosophical locking horns with Bob and the enjoyment too which we lesser mortals had in listening to them. A great man in so many ways.
Kevin: nice guy who always made time for others: RIP
I’m so sorry to hear of Kevin’s death. He was a pleasure to work with and combined humour and warmth with intellectual rigour in ways that meant his contributions were great. What a loss to disabled people’s activism for change
I’m so sorry to hear this news, I had no idea. Although I didn’t know Kevin as well as most of you, what stood out for me on top of his obvious intellect, was his integrity and sense of fun. He will be sadly missed.
Thank you for including me amongst those you have notified concerning the passing of Kevin last night. As I was invited to attend the DRC lunch in May (which you unfortunately were unable to be present) I had the opportunity to meet up with Kevin again after some 7/8 years. A very pleasant re-acquaintance with him recollecting some of the issues we had “chased” together, including sporting moments! I had been aware of his health concerns for a long time, indeed from the early days. It is sad and poignant from my point of view as my first wife died in Swansea 40 years ago next week. Nevertheless he was able to make a considerable contribution to the causes he espoused and cherished. His friendship will endure-he not be forgotten.
This was a great shock – I had no idea. I’m glad that I had the opportunity to renew my acquaintance with Kevin after some years at our DRC lunch last May when we had a lively conversation about assisted dying. If you are able, please pass on my condolences.
This was a great shock – I had no idea. I’m glad that I had the opportunity to renew my acquaintance with Kevin after some years at our DRC lunch last May when we had a lively conversation about assisted dying. If you are able, please pass on my condolences.
The last time I saw Kevin was about a year ago when we met up for dlc reunion, he seemed quite fine, it just shows what life is all about. I never ever felt like I had a learning disability with Kevin, he always spoke to me like an adult. One of the lessons I learnt from Kevin was when Burt asked me if their was an injection to get rid of my learning disability and I said no, I asked Kevin if he would have an injection and he said yes, he do anything to get rid of his pain. I soon learnt when I had kidney stones, I then realised what Kevin was on about I too would do anything to get rid of my pain. Thanks for letting us know from
Messages on Facebook
Alex Schadenberg from Canada,
“My good friend and colleague, Dr Kevin Fitzpatrick, passed away today. I will truly miss this great man who cared about others and who was intellectually clear. Kevin worked over the past year as the Director of EPC International and he founded HOPE Ireland.
Jane CampbellIt is with great sadness that I am writing to tell our that our dear friend and colleague, Kevin Fitzpatrick died last night in Swansea, surrounded by his family. You may have already heard about this tragic news but Kevin specifically asked me to let his NDY UK friends know when the time came. Kevin has been very private about his battle with cancer as he didn’t want others to worry about him or let his illness detract from his tireless work to prevent the legalisation of assisted suicide. Selfless to the end.
It is with great sadness that I am writing to tell our that our dear friend and colleague, Kevin Fitzpatrick died last night in Swansea, surrounded by his family. You may have already heard about this tragic news but Kevin specifically asked me to let his NDY UK friends know when the time came. Kevin has been very private about his battle with cancer as he didn’t want others to worry about him or let his illness detract from his tireless work to prevent the legalisation of assisted suicide. Selfless to the end. I know Kevin will be greatly missed by all Kill the Bill campaigners. Missed for, among other attributes, his larger-than-life personality, intellectual rigour, vitality, humour and genuine warmth. A sad loss to all of us, and the thousands of disabled people’s lives he touched as he fought for our humanity to be valued equally, no matter what our impairment or illness. The “NO Legalisation” has lost one of it’s greatest advocates.
This time last year, a bunch of us NDYUKers were outside the House of Lords protesting against the Falconer AS Bill. Some of us were physically there and 80 more people who couldn’t attend instead gave their words and images to be used in giant yellow placards. It was a powerful and effective demo and I shall cherish the memory even more because I got to share the picket line with Kevin Fitzpatrick who many of you will now know, died in the last few hours.
Kevin’s passionate opposition to AS, his philosophical understanding of the issues, his humour, intelligence, optimism, energy, sense of justice and of course, his great company are some of the many things that I am going to miss.
I am so proud of Kevin’s decision to keep his private life private. During the past year, he decided that he didn’t want to be the pin up for disabled people’s opposition to AS – despite the immense pressure from the media to talk about our impairments and illnesses to gain precious column inches and air time. He was a man of great integrity.
Kevin was a bloody lovely man whose life and death epitomised the true meaning of ‘dignity’.
Oh that is so very sad. I had so many interesting conversations with Kevin. That’s such a sad loss for our community and for the disabled people’s movement.
Such sad news. An important light has gone out of our lives. I will really miss Kevin.
Paul Saunders from Care Not Killing has written a tribute to Kevin Fitzpatrick here is the link Tribute to Kevin Fitzpatrick
Thank you so much for letting me know…. I first met Kevin in my early 20’s – he was the first ‘political’ disabled person I met. He left a lasting impression on me
Messages on Twitter
‘The Euthanasia Prevention Coalition: ‘We mourn the death of Dr Kevin Fitzpatrick, who was the director of EPC International, the founder of HOPE Ireland and a leader of Not Dead Yet UK. One of Kevin’s best articles is: Opposition to euthanasia is based on evidence of disability discrimination.’
‘Care Not Killing: remembers a great advocate, campaigner & friend.’
Very sad news, one of our strongest & best campaigners has died. Kevin Fitzpatrick helped set up @notdeadyetuk We’ve lost a great friend.’
We’ve lost one of our brightest stars’
‘ Kevin Fitzpatrick – Staunch, warm, passionate in fighting euthanasia.’ Wendy Wicks
‘Our dear friend & fellow fighter Dr Kevin Fitzpatrick has died’ Care Not Killing
‘So sad. A huge loss’. Neil Crowther
‘Sad to learn of the death of anti-euthanasia campaigner Kevin Fitzpatrick. A powerful and articulate advocate’ Disability Now magazine ‘Sad news. Kevin was a great man’ Robert Colquhoun
‘Sad news. Kevin was a great man’ Robert Colquhoun ‘We are very sorry indeed to hear the news about Kevin’ Breakthrough UK
‘We are very sorry indeed to hear the news about Kevin’ Breakthrough UK
Caroline Simons (lawyer): ‘Dr Kevin Fitzpatrick OBE was an inspiration. It was a privilege to have met him. RIP’
Neil Fox: ‘Kevin Fitzpatrick of Hope Ireland promoting a culture of life and empowerment for all. #disability #promotehope RIP’
Tracy Proudlock: ‘The world had gained much from his knowledge and insight. RIP’
Hope Ireland have written this message:
We are saddened to report the untimely death of our founder and friend, Dr. Kevin Fitzpatrick. Kevin was a tireless supporter of disability rights, an articulate and gifted advocate and a dear friend to all who knew him. He will be missed. Hope Ireland extends its condolences to his family and many friends. May he rest in peace. We will honor his legacy by continuing his campaign to protect the most vulnerable in our society and thank you for your support for our work.
Many of you will have heard the New Years Day interview that Baroness Jane Campbell had with Matthew Parris when she was guest editor for the BBC Radio 4 Today programme. Our supporters expressed considerable anger around Parris’s central assertion that the economy could not sustain the high costs of looking after dependent older and disabled people. In this thoughtful article, Don Brand questions Parris’s assertion.
An Immodest proposal
Dean Swift and the Scandal of Poverty in Ireland
In 1729, Jonathan Swift, Dean of St Patrick’s, Dublin, published a pamphlet he called “A Modest Proposal”. In reasoned tones, he set out his novel solution to the problems of extreme poverty in Ireland. The pamphlet’s full title is A Modest Proposal for Preventing the Children of Poor People From Being a Burthen to Their Parents or Country, and for Making Them Beneficial to the Publick.
Swift’s proposal is that the impoverished Irish might ease their economic troubles by selling their children as food for rich gentlemen and ladies. “A young healthy child well nursed, is, at a year old, a most delicious nourishing and wholesome food, whether stewed, roasted, baked, or boiled; and I make no doubt that it will equally serve in a fricassee, or a ragout.”
Swift knew his proposal would give offence to his readers. He intended to shock them into recognising the severe effects of grinding poverty on the Irish people among whom he lived: the desperate measures it provoked, the evil consequences in blighted lives, starvation and criminality.
But Swift also managed to convey, to those with ears to hear, sustained irony. Alongside his savage case for refined cannibalism, he follows the style of the Roman satirist Juvenal in purporting to dismiss the solutions he really believes in.
Therefore let no man talk to me of other expedients: Of taxing our absentees at five shillings a pound: Of using neither clothes, nor household furniture, except what is of our own growth and manufacture: Of curing the expensiveness of pride, vanity, idleness, and gaming in our women: Of introducing a vein of parsimony, prudence and temperance: Of learning to love our country, Of being a little cautious not to sell our country and consciences for nothing: Of teaching landlords to have at least one degree of mercy towards their tenants. Lastly, of putting a spirit of honesty, industry, and skill into our shop-keepers………
Therefore I repeat, let no man talk to me of these and the like expedients, ’till he hath at least some glympse of hope, that there will ever be some hearty and sincere attempt to put them into practice.
Matthew Parris and “Useless People” leading “Fruitless Lives”
Before Christmas, the commentator Matthew Parris published an article in the Spectator, setting out his own proposal for tackling a central problem of an ageing population: the rising costs of meeting their health and care needs, placing a growing burden on the economically active. His article appeared under the title Some day soon we’ll all accept that useless lives should be ended. When interviewed by Baroness Campbell on the Today programme on New Year’s Day, Parris’s attempt to defend his views was a fine example of the comedy of embarrassment.
It would be reassuring to think Matthew Parris sees himself as a latter-day Dean Swift, making his own Modest Proposal for our contemporary times. For Parris has looked into his crystal ball, foreseen rapidly rising numbers of disabled and older people, concluded the cost of their care will bankrupt the country, and come up with a radical solution.
He argues that the rising cost of health and care services for this growing number is well on the way to becoming unaffordable:
There are 11 million disabled people in Britain. As the proportion of our population disabled by old age increases, the figure can only rise. The result — we see it already as our health service struggles — is that an ever heavier burden falls on proportionately ever fewer wage-earning shoulders.
The mention of “wage-earning shoulders” blithely ignores the £17.5 billion income tax paid by pensioners. With the same reasoned tone as Swift, Parris walks us step by step towards his Modest Proposal. First, Kipling-like, he invokes the well-being of the tribe:
Tribes that handicap themselves will not prosper. As medical science advances, the cost of prolonging human life way past human usefulness will impose an ever heavier burden on the community for an ever longer proportion of its members’ lives. Already we are keeping people alive in a near-vegetative state. ………..Like socialist economics, this will place a handicap on our tribe. Already the cost of medical provision in Britain eats into our economic competitiveness against less socially generous nations.
The sleight of hand embodied in that last sentence – how much is Britain’s economic competitiveness “eaten into” by medical costs, compared with, say, our low productivity rate? With which “less socially generous nations” is Parris comparing us? – continues in the next paragraph:
As costs rise, there will be a point at which our culture (and any culture) will begin to call for a restraining hand. I believe that when it comes to the cost of keeping very enfeebled people alive when life has become wretched for them, we’re close to that point.
So the case for euthanasia as a solution to excessive costs to the Exchequer is dressed up as a kindness to “very enfeebled people” whose life has become “wretched for them”. And the drastic shift of culture this entails is now presented with almost Marxist historical inevitability:
I don’t even say we should look more benignly upon the termination of life when life is fruitless. I say we will. We may not be aware that our moral attitudes are being driven by the Darwinian struggle for survival, but in part they will be. And just as we feel ourselves looking more sympathetically at those who wish to end it all, so we shall be (unconsciously) looking at ourselves in the same way. The stigma will fade, and in its place will come a new description of selfishness, according to which it may be thought selfish of some individuals (including potentially ourselves) to want to carry on.
Parris and Malthus
Parris evidently believes he is saying something new, observing a phenomenon others have failed to perceive. But his basic argument is the same as that of Thomas Malthus more than 2 centuries ago about over-population. Malthus argued that unchecked population growth would outstrip the ability to feed people, and the solution lay in preventive or positive checks of one form or another. He believed in “positive checks”, which lead to ‘premature’ death: disease, starvation, war, resulting in what is called a “Malthusian catastrophe”. The catastrophe would return population to a lower, more “sustainable”, level.
Parris has simply created a special case of this general theory, arguing that unchecked growth of disabled and older people is already outstripping the means to treat, support and care for them. He’s not brought the food supply into the debate yet, but presumably his grotesque dystopian vision of large-scale euthanasia would be carried through “humanely” by gradually restricting the intake of food and drink allowed to the “useless” people. This system has already been piloted in The Liverpool Care Pathway.
Implementing the Parris Solution
It is said that every crisis represents an opportunity. How would Parris’s drastic solution be implemented? A process would be needed for selecting the people who are going to be shunted into this particular siding. One obvious mechanism would be application of NICE’s methodology of QALYs, but with a much lower tariff. NICE regards annual treatment costs of £30k per person as a reasonable value to put on a life. For “useless people” Parris would presumably want a much lower figure, preferably well below £10k.
The processing could be put out to tender. Several of the big-name firms versed in delivering public services for profit could make a good case for having the necessary skills (and friends in high places). Proper appeals machinery would also be required at several points in the process, perhaps through a Useless People’s Tribunal Service. As Parris evidently thinks other developed nations with ageing populations will see the logic of his argument and the attractiveness of his proposals, the Tribunal could quickly go international. Its Chair might well be willing to let the UK have the service at below cost, if it acts as a loss-leader for business with other rich nations.
Is there an alternative?
None of this might be necessary, of course, if instead of trying to eliminate the excess of people using the NHS and social care, we pursued greatly increased productivity and efficiency. This would involve producing better, more effective health and social care at significantly lower unit cost.
This could be helped by tackling three of the big dysfunctional features of the NHS: its inability to control the drugs bill, and blatant exploitation by the drugs companies; its toleration of entrenched protectionism by the main health professions; and its lack of a coherent research investment strategy. The allocation of research funding is based on a beauty contest of health conditions. The gross discrepancy between the NHS and social care in the levels of state research funding they receive is just one symptom of this lack of a strategy.
Lip service is regularly paid to these objectives; and Parris might echo the ironic doubts expressed by Swift about whether “there will ever be some hearty and sincere attempt to put them into practice.” But promoting them would surely be a better use of his genuine talents than continuing with his wrong-headed and nihilistic campaign to foster a climate in which mass euthanasia becomes a social good.
The intelligent man who spouts nonsense is a sad spectacle. The commentator who fails to connect the elimination of “useless” people with events in Europe 75 years ago has lost his moral compass. The normally astute journalist, frustrated that a slightly-built disabled woman consistently has better arguments than he does, makes a fool of himself as he blunders from one mistaken point to another untruth. Isn’t it time the referee stopped the fight?