Assisted Dying

A great deal of controversy is currently surrounding the subject of Assisted Dying in the UK.
As a member of Not Dead Yet - UK, I find the idea of a terminally ill or a disabled person regarding the quality of their own lives so intolerable that they wish it die is a very sad indictment on the UK’s Palliative Care or Independent Living systems.
The answer, in my opinion, is not for the terminally ill or disabled person to end their lives, but for the quality of the systems to be improved so that quality of people’s lives are not so intolerable and/or that the support that people receive is increased that they do not feel that they are a burden on their loved ones or carers. OK this will cost money, but is this not a measure of our civilisation?
Recently there have been two cases of disabled people who have joined the Swiss assisted dying organisation, Dignitas.
The first was Daniel James, a 23 year old man who broke his neck while playing rugby. Daniel sadly committed suicide with Dignitas’ assistance in September.
In order to find our more about this I wrote to two Swiss friends of mine, Josef and Regula Jakober. Josef is a C5/6 Tetrapleagic who broke is neck in the 1970s.

Dear Josef and Regula,
I have been talking to an old school friend and apart from being a Member about the Daniel James case.
We were wondering whether the Daniel James case had been reported in Switzerland and what was the Swiss public's views on this case?
In case you have not heard about Daniel James, he was a 23 year old man who broke his neck last year playing rugby when a scrum collapsed.
Following his spinal injury Daniel was depressed, which I would think is a perfectly normal reaction. He tried to commit suicide a few times, again if someone is clinically depressed, this is not surprising. It has been reported that he felt that he had a "second-class existence".
In my experience, over time, people with a spinal injury's psychological outlook usually improves, they usually come to terms with their paralysis and get on with their lives. I have come across some people with spinal injuries who say that it changed their lives for the better, giving them direction.
I daresay very familiar with this scenario.
However, somehow this particular young man got in touch with Dignitas, the Swiss assisted suicide group, who, as far as we understand assist people with terminal illnesses to commit suicide, which apparently is legal in Switzerland (assisted suicide is illegal in the UK).
On 12th September Dignitas helped Daniel to kill himself.
We feel that Dignitas has moved the goal posts as up until Daniel, they were assisting people with terminal illnesses, which we oppose, but Daniel was not terminally ill! We feel that this is a very slippery path leading straight to the door of Tiergartenstrasse 4.
What we would like to know is:
Has Daniel's case been reported in the Swiss Media?
What is the public opinion about Daniel's case in Switzerland?
We hear that there are moves to change the law to prevent Digital assisting people who are not terminally ill in future.
Has any official action, if any, been taken against Dignitas?
Back in Britain, Daniel's parents have been arrested and interviewed by the police and I suspect that the case will be referred to the Director of Public Prosecution.
Please let us know what is happening over this case in Switzerland,
Thank you,
Andrew

Regula’s reply is interesting as it appears that Dignitas is operating on the edge of Swiss- law and Dignitas is not popular in Switzerland because of the rather sordid way that the organisation operates.

Dear Andrew.
Quite by chance yesterday evening there was a documentary about Dignitas on Swiss TV, made by a Canadian. We watched it, so that we would have some answers for you. Assisted suicide is legal in Switzerland (under strict conditions) as it is in the Netherlands, Belgium and Oregon (USA). But apparently only Switzerland does not prohibit it explicitly for foreigners. I think that when this law became effective nobody thought of "suicide tourists" and nobody thought that this must be written in the law in order to prevent it.
Dignitas is very controversial in Switzerland and works in kind of a twilight zone, but nevertheless just on the right side of the "line". So they call the police and the coroner after the deed. According to this TV documentary about 100 foreigners come to Dignitas every year, usually in the last stage of terminal illness, and mostly supported by their families. A doctor has to see them, usually some time in advance, to talk, to read the medical records, to explain in detail. These doctors have to be quite careful, because the police controls them also.
To your questions: this case has not been reported by the Swiss Media (not that we know of). There are moves to add more details to the paragraphs with even stricter restrictions. The Ethics Commission is looking very closely into the matter.
Dignitas, or its founder, is watched very closely also. He has been evicted from apartments, where he brought the "suicide tourists" from abroad, and no community wants to have him - the undertaker`s car parks too often in front of his house.
And yes, we are of the same opinion, SCI is not an illness, although depression is. We don`t like this story either, but who are we to judge. This is a very difficult, touchy and personal subject.
But as strongly as we feel about Dignitas (not assisted suicide per se), as much we do not approve of the other extreme, eg. when patients "live" for years only because of machines for this and that and the other body function - because it`s illegal to turn off the machine on request of the said patient or his/her closest relative. Doctors are not God - but nevertheless they do sometimes decide about life or death. Modern medicine has not only positive aspects.
I hope this answers your questions.
Regula

Regula’s comment about the "undertaker’s car calling too often" and the evictions from apartments does make me ask; Just how dignified is a Dignitas assisted suicide?

This week has seen another story about suicide on the BBC News 24 website. I reproduce this directly from the BBC as I cannot really add anything to the quality of this story. It merely serves to highlight the inadequacies in the UK’s Palliative Care and Independent Living support systems.

'Dear Noel, is life really not worth living?'
Noel Martin meets Liz Carr

Paralysed after being attacked by neo-Nazis, Noel Martin is planning a trip to Switzerland to commit suicide. Here, disabled broadcaster Liz Carr, who met Noel for a BBC Radio 5 Live report, writes an open letter urging him to think again.

Dear Noel,
Having met you last week, I felt the need to write and continue our discussion about your decision to end your life soon. I don't write this as someone with strong religious or pro-life views but as another disabled person, who like you uses a wheelchair, who became disabled and who needs round-the-clock assistance in their life.
Noel, is your life really not worth living?
In interviews, you repeatedly say that because of your accident, you can't feel, you can't touch the world and can only watch as it passes by. I disagree. Throughout the interview, when we talked for example about your beloved wife who you lost to cancer, you filled up, overcome with emotion.

MORE ABOUT NOEL MARTIN
Former builder - aged 49 - lives in Birmingham, UK
Paralysed from neck down after attack by neo-Nazis in Germany in 1996
Racing enthusiast and race horse owner
Wife, Jacqui, died of cancer in 2000

In a different way, when we discussed your ongoing fights for support and assistance with your care providers, you talked with passion and anger.
You proudly showed me the racing magazine where you were "owner of the month" after your horse won at Ascot. You asked one of your staff to read out the poetry you have written since your accident. You are definitely a man who can feel.
As for not being able to touch the world around you - from an onlooker's point of view this again just isn't true. You appear to touch the world in so many ways.
You have staff who clearly respect you and enjoy working for you. You have family, a grandson and friends. Through the neo-Nazi attack that led to your accident, you have become a celebrity, a campaigner against racism, a fighter for justice. You have organised exchanges for young people from Berlin to come to Birmingham to show them that integration is possible.
You have written your autobiography. In fact Noel, it seems to me that since becoming disabled you have actually touched more people and embraced life in ways that perhaps you wouldn't have if you hadn't had your accident. You are very much alive.
I know that at the moment, your situation is frustrating. Pressure sores - the result, you say, of cutbacks in the health service - mean you've hardly been out of your bed, never mind your house, for many months now.
Wheelchair-friendly beaches
You said that as a disabled person you'll never walk on the beach, be able to stand up and cheer when your football team scores, or kiss the head of your prize-winning racehorse.
I think it's too easy for society to promote assisted suicide as a right rather than work to overcome the barriers to supporting older, ill and disabled people to live fulfilled and valuable lives
I can really relate to the idea that there are now things you can't do. I used to imagine walking hand-in-hand along a sunset beach with my lover. But the reality of not having four-wheel drive on my electric wheelchair and sinking, immobile into the sand, kept me on terra firma.
But if you're interested, I can let you know where there are beaches with sand so compacted that you can wheel on them with ease; others with boardwalks to the sea and there are now even beach wheelchairs.
Like you, I became disabled. But for me it was at the age of seven, following a childhood illness.
I know adapting to your new life and situation can be difficult. I remember as a teenager being too unwell to go out with my friends, thinking I'd always have to live with my parents and that I'd have no choice but to rely on my mum to look after me. Life wasn't much fun and at times I didn't see any point in the future.
Today, I have the assistance I need that allows me to live in my own home, to have friends, a partner and a career as a comedian. In other words, I have a life I could never have imagined back then.
How? I was lucky enough to get support, advice and information from other disabled people who've been in my situation, who showed me that there was another way and who taught me how to get what I need to live my life.
I know you've received only some of what you need in terms of access and assistance, and this has been hard won. Don't you think it's maddening that so many disabled people remain isolated, uninformed and unsupported in negotiating the confusing world of welfare, health care, social services, legislation, assessments and adaptations.
Scared of illness
Maybe that's why assisted suicide seems to be increasingly seen as an option by disabled people, not just those who are terminally ill.
Worn down, feeling like a burden and with their needs unmet, it's perhaps understandable why people like yourself might choose death. But surely before we even consider assisting people to die, we need to assist them to live.
One of the main problems I have with assisted suicide stories like yours, Noel, is that the media perpetuates the idea that to be disabled or ill must be the greatest tragedy of all. Disability inevitability equals no quality of life.
I know when people read your story, many will agree that yes, if they were in your situation then they would want to die too. Most people are so scared of illness, of disability, of getting older, that wanting assisted suicide is seen as an entirely rational desire. What scares me is that views like these will also be held by the doctors, the media, the courts, the government and all the others who have the power to decide if we live or die.
I'm sure by now you know how I feel about assisted suicide. Until the day when good quality health and social care are universally available regardless of age, impairment, race, gender or location, I believe there is no place for legalised assisted suicide.
I just think it's too easy for a society to promote assisted suicide as a right rather than work to overcome the barriers to supporting older, ill and disabled people to live fulfilled and valuable lives. Forget the right to die, isn't it more urgent that we campaign for the right not to be killed?
We may have differing perspectives on this debate but I think what we share is our respect for each other. Thank you for sharing your story with me and for letting me into your life. I hope your one-way ticket to Switzerland is an open one so we can continue this discussion over the coming years.
Until next time,
Liz

Published: 2008/11/17 12:12:58 GMT© BBC MMVIII

'I cannot forget what life was like before'

Noel Martin, paralysed after being attacked by neo-Nazis, is planning a trip to Switzerland to commit assisted suicide. On Monday, we carried an open letter from disabled broadcaster Liz Carr, urging Noel to think again. Here is Noel's response.

Dear Liz,
I think you misunderstood when I say I can't touch or feel, I will try and put it in a different way for you. When my horse won at Ascot I couldn't touch it because I have no feelings in my hands. I couldn't get close to it because horses can react in different ways.
Every owner normally pats and strokes their winning horse, to say well done. My horse may have thought I didn't appreciate what it had just done because I didn't show emotion or give it a pat.
Also my disability is different from yours. You became disabled from the age of seven, without having experience or enjoyment of life. I became disabled at 36 and by then I'd got a taste for life.
I knew the enjoyments of being a person who could walk and knew I could get further in life. That makes it harder for me to accept what has happened because someone threw a concrete block through my car windscreen.
Unfortunately in your life you didn't have a choice, or a chance, to taste the sweetness and fruit of life as a walking person. You had to just go the disabled way and adapt to life the best way you could.
I mean no disrespect to you or anybody else, but you haven't known or felt what it is to live life any other way, or had the privilege to live it any other way.
Take the example of Stevie Wonder. He was born blind and cannot tell you what beauty looks like because he has never seen it. He cannot tell you what the colour green looks like or his children's faces. He can only interpret it in his own way.
No control
But Ray Charles was born with his sight, even though he went blind very early in his life. He could still tell you what beauty looks like, to a certain degree, and know the colours of the world. But he could not explain many of things after because he was too young to know.
To me these are two disabled people who have two different ways. They've both done, or did, so well in life, but what about other things? I'm sure they would give up all their wealth and musical talent to see the faces of their children.
Concerning my feelings for my wife and shedding tears, those are things that are trapped inside of me. I have no control over tears, for me every day is Groundhog Day.
The laws about assisted suicide in this country are made by educated people, but that counts for little when it comes to commonsense. If these are the type of people that make decisions for me, I would rather die. An English man's home is supposed to be his castle, but I cannot shut my castle doors and keep people out.
Just think what I could feel if I was walking. My wife always used to imagine the heights I would have reached if I had not been cut down. Should I settle for second best? No!
Again, you insist in your letter that I can touch the world, but when I speak nobody seems to be listening or understanding. A sane person can jump off a roof and nobody makes a fuss because it's their freedom of choice.
I am not condemning anyone, it's just that it's not within their power to share the pain another individual goes through. You cannot split pain in half and give it to someone else to lighten your load.
You cannot say I would not have touched so many people if I hadn't been paralysed - you didn't know me before my accident. You said I have become a celebrity campaigner against racism? Well, I've campaigned against racism since I came to England aged 10 and the world is still an ugly place.
You mention the cultural exchanges I organised between Germany and Britain to understanding. They are no different from organising a game of football in the playground. And writing an autobiography is equivalent to drinking a cup of tea for me. I know where my mouth is and I know what life I lived before I was paralysed, so it's easy to put it on paper. What I don't know is the life I would have lived if I was not paralysed.
Destiny is a strange thing, fear is an experience that nobody can live by. You cannot share pain and freedom of choice from God is mine.
Yours truly,
Noel

from BBC NEWS:http://news.bbc.co.uk/go/pr/fr/-/1/hi/magazine/7735577.stmPublished: 2008/11/18 16:02:48 GMT© BBC MMVIII

Children In Need

Over the course of my lifetime I have seen revolutionary changes in the way that Disabled People have been treated within our society.
Most people no longer see disability as a medical issue at the level of the individual and have instead become socially aware.
Disabled people are more able to take an active role in our society. Education is now more inclusive than it was, buses are now more accessible, employment opportunities are now more numerous. We have a disabled person as Prime Minister. Housing is becoming more accessible. There are less physical barriers to access. Increasingly, charities are becoming controlled by their users.
OK, there is still a hell of a long way to go before we can say that we live in a truly barrier free society, but things are certainly more equitable than they were say 30 years ago
There is however one insidious institution that remains virtually unchanged. Every year the BBC subjects its audience to an evening of poor quality "entertainment" where by waning celebrities perform their dubious acts in order to raise monies for so called "good causes".
Their mascot, Pudsey Bear, reigns supreme for the torturous evening, with the knotted handkerchief covering one eye, which is so blatantly a disability-related symbol, but I have yet to meet a single disabled person who has been consulted over where the dosh that is raised is distributed to.
There is another issue. The people who hand over their hard earned cash to Pudsey are actually funding activities that I believe ought to be funded by the Government themselves.
Twenty years ago I was one of the founders of the Campaign to Stop Patronage. The Campaign succeeded in making the ITV Telethon so unpopular that no Independent Television company wanted to purchase it after 1993. Comic Relief chose to become more socially aware and stopped using negative imagery of disabled people to promote their fundraising. However we were not able to tackle the BBC successfully.
Below I attach an article that I wrote in November 1990 for the Campaign to Stop Patronage, but which was never published. I am amazed that nearly 20 years later it still seems strangely relevant.

A History in the Making:

It was 7 p.m. on Friday 23rd November 1990 and I was cold standing outside the BBC Television Centre in Wood Lane, West London. My partner (at the time), Caron was asking for another cup of coffee from our flask. She was cold also and so were the other 50 members of the Campaign to Stop Patronage who had turned out that night to demonstrate against Children in Need. Elspeth Morrison has just graciously accepted the first "The Most Partonising Personality of the Year" award on behalf of Esther Rantsen. Vicki Waddington walked past wearing a space blanket and I thought "What the fucking hell are we doing here?" And for a moment my resolution wavered.
Then I remembered that ever since I was a small child I have been aware of charities collecting money for disabled people and that I had never actually seeing any tangible benefits of this money that should not have been provided as of right by Central Government. That Disabled People certainly don’t have any control over where it is spent. My anger returned
I had already offered to write this article on how the Campaign to Stop Patronage came to being formed for our first newsletter. The only realistic way that I can do it is from my own personal viewpoint.
I can clearly remember being about the same height as one of those Spastic Society manikin-type collection boxes asking my mother where the money that people were putting into the slot in its head went and why couldn't they (the Spastics Society) buy me an electric typewriter that I needed (I have cerebral palsy and cannot write clearly).
Over the years I have become increasingly aware of the enormity of the power of these charities and the way that they disempowered Disabled People. For example, charities that run residential homes can have the power over Disabled People who live within their homes to decide every aspect of these people's lives, what time they get up, what they wear, what they eat, what they drink, what they do to occupy their days, and what time they go to bed. Even whether or not disabled people can have sex!
I have sat in meetings, at work, and listened to non-disabled "professionals" making decisions about disabled people who are in their "care" which have made me want to throw-up, but until recently, for political reasons, have been powerless even to raise an objection.
At the same time, Anna Thorpe and I, through organising a self-advocacy group in Ealing where we both live, have become increasingly frustrated over the level of disempowerment among young disabled people who have become products of "the system". We came to the conclusion that it was the patronising way that the media and the charities portray disabled people that were creating disempowering images.
The media and the charities, depending on their objectives, either portray Disabled People as pitiful, pathetic people who are incapable of doing even the most basic function or paradoxically as "Supercripples" who from simply living with their disabilities or from wanting to do things that the average non-disabled person does, become brave, courageous and special. Consequently, society's expectation of Disabled People is reduced which increases the level of discrimination, disablement and disempowerment that Disabled People have to contend with.
Throughout our conversations the same point kept being raised, that it was the television appeals which combined the worst aspects of patronage. ITV Telethon, Children In Need and Comic Relief transmit negative images of Disabled People introduced by condescending presenters like Frank Bough, Terry Wogan and Lenny Henry who play on the viewer's guilt with the message that if you contribute to their appeal that the viewer will feel better about being thankful that they are not Disabled People too.
We kept saying that we wanted to do something to say, "No, Stop! Disabled people are not special. Disabled People are not objects of pity. Disabled People are not courageous. But. Disabled People are strong. Disabled People are proud. Disabled People are angry at the way that we are discriminated against. Disabled People are angry at the way that we are disabled by society. Disabled People demand the resources, as of right, to enable us to maximise our life chances and thereby compete, on an equal basis with non-disabled people in our society."
Towards the middle of March 1990 Anna and I decided to go for it. We decided to organise a demonstration against the ITV Telethon. Neither of us had organised a demonstration before. I am sure that over time the rest of this story, that is yet to be conceived, will become history.

Andrew Little
November 1990