'Do not resuscitate' the sign
that sits above our bed
tells all those hard professionals
that we’d be better dead
Though 'mercy killing' is the term
to soften this cruel law
it takes away our right to choose
our voices heard no more
But we're not dead yet
despite what they all say
no we're not dead yet
and we’re not going to go away!
They see us as a burden
dependent and so needy
consuming their resources
always taking, always greedy
So even when there’s treatment
that other folk may get
our impairments cloud their judgement
and their minds are fully set
But we're not dead yet
despite what they all say
no we're not dead yet
and we’re not going to go away!
So when you think of killing us
just pause and make a list
of all the famous crips there’ve been
the world would then have missed
We’re all creative, clever
though in different quirky ways
So stop your trying to kill us
Let us all live out our days
‘Cause we're not dead yet
despite what they all say
no we're not dead yet
and we’re not going to go away!
(Optional) Yes we're not dead yet
though we hear the medics scoff
no we're not dead yet
so they can all ... FUCK OFF!
Anthem created by Dave Lupton aka Crippen in collaboration with Liz Carr, music and song by Simon (Woody) Wood – 23rd June 2014 All Rights Reserved
A non-disabled friend of mine expressed suprise that not only was I unwilling to help him ensure that assisted suicide would be made fully accessible to disabled people, but that I was also very much against the idea of assisted suicide being made legal in the first place!
Recently retired from a life in the medical profession, John is now serving in a voluntary capacity on a panel set up to address the issue of making assisted suicide legal. In his - in other areas commendable - awareness of disability equality he wanted to make sure that assisted suicide would be equally accessible to disabled people and he wondered if I would be able to help him think through some of the associated issues.
It became clear as I started to explain my position on this subject, that he hadn't considered there would be people vehemently opposed to the whole concept of helping someone commit suicide. His rational medical mind had seen it purely as a way of helping people who were too ill to continue living, and who had made a decision when they'd been able to do so, to obtain assistance to end their life in a dignified and peaceful manner.
Part of his argument was that it was something that was already happening; doctors and other medical staff assisting a patient to end there life by witholding treatment or by increasing the dosage of pain killers. Making it legal would mean that there would be controls put into place and that medical professionals wouldn't be able to randomly end someone's life as they saw fit.
I started to explain that disabled people in particular were adamantly opposed to assisted suicide becoming legal because this would inevitably mean that a medical professional would have the power of life or death over a disabled patient, and that it would inevitably lead to pressure - however subtle - being put on people who felt that they were becoming a "burden".
I told John about disabled activist Jane Campbell, in the forefront of the 'Not Dead Yet' campaign who had woken in a hospital bed to hear a doctor discussing whether or not they should place a 'do not resuscitate' notice in her medical notes. And this had taken place without any prior discussion between Jane or her family ...
He replied that this was exactly why legislation was needed. If there was a legal framework around such medical intervention, Jane would have had to have been consulted before any discussion about this took place. I pointed out to him that current legislation already protected Jane's rights in this way and that by making assisted suicide legal this could undermine those rights.
My medical friend - a good, thoughtful and thorough man - was none the less unaware of the groups of disabled people who were campaigning against legislation or of the arguments that we are putting forward against it. From listening to him it seemed that the panel had proceeded with the assumption that making assisted suicide legal was not only a positive thing but was also in the best interests of everybody. I think he was suprised to learn that there were so many people against the idea, despite the recent 'End of Life Assistance (Scotland) Bill' by Margo Macdonald suffering an overwhelming defeat by a 85-16 margin last November because MSPs were convinced that its ‘safeguards’ were not safe.
I concluded our discussion by suggesting that perhaps people would not see assisted suicide as the only option if support services for people at all stages of their lives (and death) were adequate and appropriate.
I've offered to give my friend some information compiled by disabled people who are against legislation being passed and to provide him with the contact details of those people who would be prepared to discuss the issues with him. If you have something to say on the subject, please leave your comment in the following section and I'll make sure that it is forwarded. Thanks.
There are currently several other sites covering this subject. Here are the links for a few of these.
Click here for the Scope article
Click here for the 'Not Dead Yet' article
Click here for the Disabled People Fight Back blog
Click here for the Face Book page for Mental Health & the Wider Disabled People's Movement
Click here for the London School of Economics blog
The following is an extract from Baroness Jane Campbell's recent comment in the Guardian.
"Disabled and terminally ill people have had to deal with fear, prejudice and discrimination since the beginning of time. Our lives have been devalued by statements such as "he/she'd be better off dead". In recent years, calls for a change to the law prohibiting assisted suicide have grown louder and more frequent.
"They capitalise on fear. Fear of pain, fear of loss of dignity, fear of being a burden. And, yes, fear of witnessing those fears being felt by those we know and love. The solution offered to the fear of disability and illness is final: suicide.
"Yet suicide is not well thought of in our society. It is 'committed' by the mentally ill and those unable to face the future. In both cases, society does all that it can to prevent suicidal thoughts being enacted. Life is too precious to be solely entrusted to individual action.
"That society is willing to protect us, even from ourselves in times of personal crisis, defines our – and its – humanity. However, those seeking a change to the law on assisted suicide say such ideals have no place when considering severely disabled and terminally ill people. Such lives, it seems, are not so precious: ending them prematurely should be a matter of individual choice.
"Perversely, if you can take your own life without assistance, society generally strives to protect you; but, if assistance to die is needed, they argue, it should be provided. The option to choose the time of one's death is to be reserved for those for whom assistance is required.
"No equality there. Yet many see this as irrefutably logical and compassionate.
"It was the realisation that the majority of disabled and terminally ill people were not being heard in this debate that led to the formation of Not Dead Yet UK. We joined with other groups in opposing the two most recent attempts to change the law.
"In each case the House of Lords was decisive in rejecting calls for assisted suicide. However, the euthanasia campaigners have vowed to try again in the current parliament."
Please click on the high-lighted links above to find out more about the current campaigns organised and led by Disabled people.
"I just received a furious message from actor Nabil Shaban, best known to the public for playing Sil in Dr Who. Nabil is better known amongst activists as a ferocious advocate against war and for disability equality, in particular the right to live in equal status to others".
This is how Clair Lewis started her journal last week, and follows on ... "Nabil Shaban ACCUSES the British media, and that includes the BBC, of pursuing an identical propaganda exercise as Doctor Josef Goebbels with his notorious pro-Mercy Killing movie 'I Accuse' ".
Nabil goes on to say that, as history has shown, this was preparation for public acceptance of State-sanctioned euthanasia. He adds: "Ray Gosling was not brave, he is a murderer and by bragging about it on air, he is putting disabled people and ill people's lives at risk."
Read the full article by Clair and Nabil by clicking here -
An email is also circulating regarding a meeting to mobilise further the campaign for assisted living. Recipients included Baroness Jane Campbell and other leading lights of the disabled people's movement.
Here is the message it contains from disabled activist Deborah Sowerby: "Some of us disabled activists based in London are trying to mobilise against the increasingly overwhelming clamour for mass 'mercy' killing. Are you aware of anyone planning/doing anything on this? Are you up for a smallish planning meeting in the next couple of weeks? We've been offered a room for free. Look forward to hearing from you."
Clair and Nabil have updated Deborah about any activism they know of, as listed in there other blogs and we all have her permission to share this query further. Therefore If you know anyone interested please draw attention to this message. And please support this meeting if you can. I'll keep my ear to the ground and post anything I hear regarding developments.
Deborah Sowerby recently commented on this piece in Humanist Life regarding Terry Pratchett, 'Shaking hands with death - Terry Pratchett gives the Dimbleby Lecture'. To access the link to the article, please click here
Deborah says: "Many disabled people live (as in 'life') day in day out with these issues and questions. Many have done so from birth. I say from birth because birth is when the assisted dying 'question' is first raised, framed in terms of (you've guessed it) kindness and compassion. We don't get into questions such as what would the baby choose. No, these things are decided by others...
Nowadays the focus has shifted to the other end of life. But the arguments are the same - not based on fact, reality or experience but fear and ignorance. Oh, and economics as well. Money. Resources. This clamour for easier (assisted) suicide takes place against a backdrop of economic catastrophe where the cost of assisted living is unaffordable,fact.
So, kill the useless eaters, but let's not call it killing. No need.Simply keep going on about the TERRIBLE drain on the public purse and,in the same breath, keep saying how AWFUL it is to be old/disabled/in pain/dependent on others. By constant association (conflation) the two ideas merge.
Now we have one problem. Brilliant. We know what the problem is and who to blame. It's a short step to identifying the solution: reduce costs and relieve suffering in one go. Job done.
That takes care of the miserable old people dribbling on the mat. But how about that sweet little baby gurgling in the crib? What sweet little baby gurgling in the crib?"
If you want to get involved or support this meeting please contact Deborah Sowerby direct at email@example.com or contact Clair or Nabil through this blog. Thanks.
New Crippen web site
The new Crippen web site was recently launched. Please let me know if you have any access problems with regard to this new site. To visit the new Crippen web site please click here
You can access a profile of Crippen on this web site along with other disabled contributers.
To access the Crippen profile page please click here
Unsurprisingly Assisted Suicide is still in the news with another ruling that let a mother who aided her daughter to end her life, walk away from a murder charge. Why the daughter who had ME was 'bed ridden' for over 17 years, was just one of the issues that wasn't addressed during the recent court appearance.
The author Terry Pratchett, who was recently diagnosed with Alzheimer's has also come forward to advocate changes in the law that will make assisted suicide legal. He has also
recommended the setting up of tribunals to decide who should 'qualify' for this method of ending their life.
For many Disabled people, the ease with which public opinion and now the law is sliding towards a society in which assisted suicide is the norm has serious implications with regard to our standing as viable members of the community. It was only seventy years ago that Germany passed similiar laws which resulted in the T4 programme and the extermination of hundreds of thousands of disabled people.
What next, we ask? Laws for the forced sterilization of disabled people similiar to that which were implimented in the United States. Between 1907 and 1939. More than 30,000 people in twenty-nine states were sterilized, many of them unknowingly or against their will, while they were incarcerated in prisons or institutions for the mentally ill.
"But you're taking this out of all proportion" is the response that we are used to hearing when addressing these issues. Try telling that to the 275,000 disabled people who were killed quite 'legally' in Germany during the 1940's.
Our mate George has also started a debate on the subject. Click here to join in.
Also read Clair Lewis' well written essay on Heresy Corner. Click here for the link.
And click here for Jude Stephenson's FaceBook article.
An article caught my eye earlier today which contained the following quote from Counsellor Pat Richardson, leader of the BNP group on the Essex
council. This follows a kidnapping at knife point of a local muslim man and firebombing of his home: Cll. Richardson said her party was not behind these attacks.
"Firebombing is not a British method. A brick through the window is a British method ..." she said.
Oh, that's alright then!
The link to the article, which appears in the Guardian is:
Daniel James - Some of you may have noticed that I've recieved a response to a blog I posted back in July about the assisted suicide debate. The response is from the younger sister of Daniel James who chose to end his life back in September 2008. She's obviously still experiencing a lot of pain over the loss of her brother and I would ask people to respect this and to not add further comments without taking this into account. Thanks guys.
The current debate about assisted suicide has brought a lot of comment from Disabled people, some in support but most against. The two lead protagonists have emerged as long term disability activist Jane Campbell (or Baroness Campbell of Surbiton to give her her correct title) and Tom Shakespeare, a leading Disabled academic with a track record of making challenging and thought provoking comments.
Some of the comments that we recieved in response to last weeks blog quite rightly fell foul of the Editor's pen as DAO's editorial policy is not to carry direct attacks on individuals for their opinions. However, most comments obviously came from the heart. Thank you for those.
With regard to this topic, we now know that the amendment was defeated in the House of Lords, although the debate continues. Both Tom Shakespeare and Jane Campbell have written articles in the Guardian, as well as carrying on the dialogue in this and other blogs and on Facebook. here are some of the links:
Read Tom's article on - http://www.guardian.co.uk/commentisfree/2009/jul/07/assisted-dying-terminally-ill-disabled
Read Janes article on - http://www.facebook.com/ext/share.php?sid=220388880130&h=r5-j8&u=ALeND&ref=nf
Read Stephen Drake's essay on - http://networkedblogs.com/p7152207
Read Nabil Shaban's notes on - http://www.facebook.com/crippen.disabledcartoonist?ref=profile#/note.php?note_id=105924466547&ref=mf
Open Letter from Leaders of Disabled People’s Movement in UK and USA
As leaders of the disabled people’s movement in the UK and the USA, we are extremely concerned about how the proposed amendment to the Coroners and Justice Bill will impact onthe lives of disabled people.
If Lord Falconer’s amendment succeeds in the House of Lords on Tuesday 7 July then those who assist ‘terminally ill’ people to go abroad to end their lives in ‘suicide clinics’ would be immune from prosecution.
The phrase ‘terminally ill’ is not defined in the amendment, and could apply to people with a very wide range of chronic progressive illnesses some with life expectancy stretching to decades. Disabled people who experience progressive conditions understand far more than non-disabled
people about what it is live with these pressures. We know what is acceptable as disease or disability progresses, and for the huge number of us who say no to assisted suicide, it is because we fear the changing culture such an amendment would bring. People without experience of
disability, including our friends and families cannot predict what each stage of our personal journey will mean. Furthermore, financial and emotional conflicts of interest will always present an added burden to the situation. A law decriminalising assisted suicide would undoubtedly place
disabled people under pressure to end their lives early to relieve the burden on relatives, carers or the state.
These concerns are not side issues that only affect disabled people. We are like society’s ‘canaries in the coalmine’ who can often see the dangers of potentially discriminatory legislation before others, as it impacts on us even before the deed is done. We are scared now; we will be terrified if assisted suicide becomes state-sanctioned.
The existing law, with the penalties it holds in reserve, causes potential assisters and those wishing to die, to think very carefully before acting. The discretion within the current law enables judges to exercise compassion in hard cases. What is not broken does not need fixing.
Disabled people have been largely silent in this debate which has been carried out in the media by clerics, non-disabled commentators and a small handful of individuals with terminal conditions who are supported by Dignity in Dying. Until people like us are present to engage in this highly
complex and ethical debate, we must strongly oppose any device such as Lord Falconer’s amendment to get assisted dying in through the back door.
Baroness Campbell of Surbiton - Crossbench Peer
Liz Sayce - CEO, RADAR
Julie Newman - Chair, United Kingdom Disabled People’s Council (UKDPC)
David Morris - Chair of Independent Living Alternatives
Haqeeq Bostan - Director of New Disability Policy Forum
Diane Coleman - President, Not Dead Yet
Rachel Hurst - Disability Awareness in Action
Mike Smith - Chair, National Centre for Independent Living
Colin Revell - CEO, NeuroDiversity International (NDI)
Marilyn Golden - Disability Rights Education and Defense Fund (DREDF)
Alison Davis - National Coordinator, No Less Human
Alice Maynard - Director, Future Inclusion
Linda Burnip - Executive Health and Safety Officer for Warwickshire and Coventry CDP
Liz Crow - Roaring Girl Productions
Stephen Drake - Research Analyst, Not Dead Yet
Adrian Whyatt - Chair, NeuroDiversity International (NDI)
Keith Armstrong - Historian, writer, musician and video maker
Dawn Willis - Activist/Trainer affiliated to RETHINK
Professor Colin Barnes - Centre for Disability Studies, University of Leeds
Louise Clifford - Daughter of Max Clifford
Leonard Zandrow - General Counsel, National Spinal Cord Injury Association
Ann Macfarlane OBE - Kingston CIL
Andrew Bruce - East Sussex CIL Development Worker
Tara Flood - Director, Alliance for Inclusive Education
Andrew Little - Director, Ahead Disability Equipment & Consultancy LLP
Alison Cater - Director, Ahead Disability Equipment & Consultancy LLP
Janice Ollerton - Disabilities Studies Researcher/Activist (Australia)
Dr. Mark Mostert - Director, Institute for the Study of Disabilities & Bioethics
Virginia Beach, Virginia, USA
Joseph M. Camilleri - CHAIR, Kummissjoni Nazzjonali Persuni b'Dizabilità (Malta)
Julie McNamara - Activist / Director Crossings Theatre
Kate Nash - Not Dead Yet
Roxanne Homayoun - Direct Action Network
Dr Ju Gosling - Chair, Regard
John W Smith - Coordinator Disabled Peoples Alliance, Northamptonshire
Kelly Buckland - Executive Director, National Council on Independent Living
(for identification purposes only)