Author: NotDeadYetUK

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Not Dead Yet UK Statement on Mr Noel Conway’s legal case

***Updated 16 July, 2017***

 

While we empathise with Mr Conway in his attempts to avoid ang end-of-life suffering we do not agree that this is an inevitable experience of life and death. We also strongly maintain that changing the law to allow physician Assisted Suicide will endanger the lives of the UK’s many ill and disabled people who, with the right amount of appropriate care and support can and do achieve a peaceful passing. Palliative care is already seriously underfunded in the U.K. and we believe that legalising Assisted Suicide will negatively impact on an already unestimated service. More importantly, this type of support allows disabled and ill people to live full and enjoyable lives, with no fear of unnecessary death from coercion, error or human prejudice holding them back.

We also believe that legalising Assisted Suicide will negatively impact on how continuing illness and the lives of disabled people are viewed as a part of contemporary society. We know from our own extensive and varied experiences and research that the medical knowledge and facilities already exist to ensure a peaceful death for the majority of people who die as a result of illness and we campaign for those to become commonplace in all palliative care situations. We have seen no evidence to support the claim that the only way to ensure a so-called ‘good death’ is to utilise Assisted Suicide and instead choose to campaign for better end-of-life care through person centred palliative and medical support. While we acknowledge that mistakes are made during end-of-life we do not believe that potentially compounding those errors by adding serious risk to the rights and funding of those who choose to live is the best or safest way forward. Coupled with the fact that medical professionals often make errors when giving patients an accurate timescale with prognosis we believe that rather than ending suffering, the legalisation of physician Assisted Suicide will add to it.

We passionately challenge the notion of ‘dignity’ as used by Mr Conway and his supporters at Dignity in Dying. As disabled people and their allies, many who rely on daily practical, physical and medical assistance to survive we suggest instead that dignity is simply a perception in the eye of the beholder and is therefore as changeable and unique as each individual person. It is not illness and disability that effect a person’s perceived ‘dignity’ but the way that society values or devalues their existence as opposed to those with no impairment. It is not a real state. It is also too often wrongly associated with the loss of physical ability. As long as disability, continuing & terminal illness alone are considered enough reason to want to die then we are certain that there will be no equality to protect us in death.

These beliefs have compelled us to launch a legal intervention to Mr Conway’s attempts to change the law. We do not seek to punish him nor do we want anyone to suffer during their life or death. But we do not accept that the only way to guarantee a ‘good death’ is to risk the lives of others and instead will continue to campaign for truly equal rights for all ill and disabled people so that living with impairment is no longer perceived as ‘undignified’ and death by illness is not uniquely viewed as a ‘bad death’.

We support people everywhere who continue to fight for access to appropriate care and support in life as well as effective and appropriate palliative care and support in death.

 

16 July, 2016

Juliet Marlow
Not Dead Yet UK

 

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Assisted dying assisted suicide

Disabled People’s Organisations do not support Assisted Suicide!

An old painting showing people gathered around the bed of someone dying.
Once again those who want to see a change in the law on assisted suicide are suggesting that disabled people support this proposal. Not Dead Yet UK challenges this assertion in a letter to the Daily Telegraph posted below.
Dear Sir,
Baroness Meacher, Chairman of Dignity in Dying, claims that “[t]he vast majority of disabled people support assisted dying for the terminally ill” (Letters, Telegraph, August 10, 2016).
This fallacy ignores the fact that in the UK, not one organisation of disabled people supports the legalisation of assisted suicide or euthanasia.  When the Assisted Dying Bill was before the Parliament on the 11th September 2015, many of these groups, along side some of the highest profile disabled politicians and actors were vocal both in the media and outside Parliament to ensure their call for ‘assistance to live, not to die’ could not be ignored.
Many of these disability groups, as well as numerous individuals, put their name to a statement and letter to the editor, clarifying this position as, “We are opposed to the legalisation of Assisted Suicide. It will remove equality and choice from disabled people and further contribute to our oppression. If the Assisted Dying Bill is passed, some Disabled people and terminally ill people’s lives will be ended without their consent through mistakes, subtle pressure and abuse. No safeguards have ever been enacted or proposed that can prevent this outcome – an outcome that can never be undone.”  https://www.inclusionlondon.org.uk/campaigns-and-policy/facts-and-information/equality-and-human-rights/reclaiming-our-futures-alliance-statement-opposing-the-legalisation-of-assisted-suicide-2/
In 2014, SCOPE, one of the foremost disability organisations in the UK, polled over 1000 disabled people specifically on the issue of legalising assisted suicide. The poll found that 64% of disabled people – including 72% of young disabled people – are concerned about moves to introduce assisted suicide, believing such a law could put pressure on them to end their lives prematurely.
Finally, while Baroness Meacher says this is an issue about terminal illness and not ‘disability’, I suggest she is yet again misguided.  Almost all of the high profile cases of people calling for assisted suicide are people who are ill or disabled, but not usually terminally so.  In all of the countries, where assisted suicide and euthanasia has been legalised, the laws have been extended to include explicitly disabled people who are not dying.  Furthermore, in the USA where only four states have passed such legislation, the reasons given for people doing so have everything to do with a disability with the top reasons being a loss of dignity, loss of autonomy and loss of ability to do day to day activities.
The vast majority of disabled people continue to oppose a change in the law and remain relieved that on the 11th September 2015, Parliament overwhelmingly defeated the Assisted Dying Bill by 330 – 118 votes.
Yours faithfully,
Liz Carr on behalf of Not Dead Yet UK
Categories
Assisted dying assisted suicide Disability Entertainment

Assisted Suicide – The Musical

Liz Carr sitting in a gold wheelchair underneath the word Exit formed by golden balloons
Liz Carr in her gold wheelchair

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,

July Previews

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)

https://www.eventbrite.co.uk/e/assisted-suicide-the-musical-preview-tickets-26581199082

Colchester Arts Centre,  Wednesday 27 July, 8pm. Pay What You Can Afford.

http://www.colchesterartscentre.com/events/performance/assisted-suicide-the-musical/?spektrix_bounce=true

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Assisted dying assisted suicide

BMA votes against supporting assisted suicide

Picture of a gravestone with the words Welcome to Hemlock Grove Please Die carefully
Welcome to Hemlock Grove Please Die carefully

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!

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Assisted dying

A Picture of English life under Queen Mary Tudor 1550

A picture of Queen Mary Tudor's face
Queen Mary 1 of England

Translated in 1953 by CV Malfatti

This manuscript circa 1550 contains the following interesting account of assisted dying!
 “There is also another merciful treatment that they are accustomed to use on sick people, as follows; when anyone is given up by doctors and there is no remedy for his illness, the nearest relatives take a pillow, put it on the patient’s throat and sit on it, thus causing him to be suffocated this is done by the father to the son as well as by the sons of the father, and, as they have full faith in the doctor’s judgement, that the patient cannot be saved from suffering in any other way they think to please God by freeing him from pain, this kind of merciful action is not to be found among all sorts of people, but only among those of low standing in certain parts of the country remote from the sea, where some barbarous customs still persist owing to their being little contact with the outside world.”
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Assisted dying assisted suicide Disability Disability portrayal

The debate continues

NDYUK protesters with banners at film premiere
NDY UK protest at Me Before You film premiere

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

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Assisted dying assisted suicide Disability Disability portrayal

“Me Before You” Film panned by Not Dead Yet UK

Me Before You Snuff Movie

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.

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Assisted dying assisted suicide

A Collection of Updates

A picture of Canadian Parliament Building in Ottawa
Canadian Parliament Building in Ottawa

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

Canadian government introduces bill to legalize assisted suicide, euthanasia

Bill C-14

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

picture of Liz Carr on stage in a golden wheelchair rehearsing
Liz Carr on stage in her golden carriage!

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

Categories
Assisted dying assisted suicide Blog Care Not Killing Disability Disability portrayal

Disability, Assisted Suicide and the Film Industry

Picture of Simon and Debbie Binner

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.

Picture of Dominick Evans
Dominick Evans

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

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Tributes to Dr Kevin Fitzpatrick OBE

Picture of Dr Kevin Fitzpatrick OBE

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”

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.

Bert Massie

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.

Elaine Noad

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

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.

John Hougham

Kevin: nice guy who always made time for others: RIP

Stephen Alambritis

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

Liz Sayce

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.

Tim Escudier

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.

Peter Humphrey
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.

Colin Low

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

Eve Bennett

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’.

Catherine Garrod
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.

Phil Friend

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

Tanni Grey-Thompson

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.

 

 

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