A personal reason for relief by Alison Davies
A personal reason for relief at the defeat of Lord Joffe’s “Assisted Dying for the Terminally Ill” Bill
by Alison Davis 20th May 2006
I was in the House of Lords for the vote which defeated Lord Joffe’s Bill, and I don’t think anyone heaved a greater sigh of relief that I did at the news. His Bill has now been presented three times since 2003, each time in a more restricted form than the last. The final form of the Bill, which had its second reading on Friday 12th May 2006 would have allowed “doctor assisted dying” to terminally ill adults who are “suffering unbearably,” and was described in the media as having “strict safeguards” to prevent “abuse.” The Bill would have allowed doctors to prescribe lethal drugs, but the patient would have had to take them him or herself. Previous forms of the Bill would have allowed doctors to actively kill their patients.
Many disabled people opposed the Bill, noting that it would place intolerable pressures on suffering people, who could well be persuaded that they are “burdensome” to their carers, and would be “better off dead.”
Twenty years ago I needed no persuasion to think that I would be “better off dead.”
I have spina bifida, hydrocephalus, emphysema and osteoporosis. I also have kypho-scoliosis and arthritis. My spine is collapsing, and causing extreme pain as it traps more and more nerves. I take morphine daily in attempt to control the pain, but it doesn’t always work. When the pain is at its worse I cannot move, speak or think. It can and often does go on for hours and there is no prospect of relief. In fact, it is certain to get worse. Because of the morphine I often feel nauseous, and not infrequently I am physically sick, especially in the mornings, when the pain is sometimes particularly bad.
Twenty years ago, when doctors (wrongly as it turned out) thought I was terminally ill, I decided I wanted to die, due to a combination of the pain and other factors in my personal life. Over time it became a settled wish, and I wanted to die for over 10 years. For the first five of those years I attempted suicide several times. Some of the early attempts were really “cries for help” but they became more serious over time. At first I would take moderate overdoses of pain killers or scratch my wrists badly enough to bleed quite a lot, but not to be dangerous. My mind was sick and confused, and I simultaneously wanted to have more physical pain, to take my mind off the unbearable mental pain, and to go to sleep for ever and never hurt again.
I became ingenious at finding ways of hurting myself to add to the already very severe spinal pain. My friends went through my house removing sharp objects (I can clearly remember through the mental haze eating scant meals with a spoon because all the knives had been moved), but I would use pins, needles, even paper clips and sharpened pencils to open up the scars on my wrists.
As time went on, the attempts at suicide became completely serious, and I tried various methods. I was determined to succeed, perhaps particularly on one occasion that sticks in my mind.
I took a huge overdose of pain medication and cut my wrists badly (I had found an old penknife at the back of a drawer which had escaped the general removal of sharp objects.) I then drank a whole bottle of Martini, lay down in bed, cuddled my favourite teddy bear and waited to die.
Fortunately for me (though at the time I thought it was most unfortunate) my friend Sue arrived shortly afterwards. My door was never locked at that time and she let herself in, found I was losing consciousness and called 999. I was taken to hospital and treated against my will. I refused stomach pumping and treatment for my wrists, and remember thinking how stupid it was of the doctor to ask for my consent “otherwise you will die” when that had been my specific intention. Because of my refusal of treatment, he waited until I lost consciousness then treated me anyway.
If Lord Joffe’s Bill had been law then, I would have qualified for “assisted dying” and I have no doubt whatsoever that I would have requested it.
Two things helped me to re-establish a sense of the value of my own life. The first was my friends, most significantly my assistant Colin Harte, who has now been with me for 17 years. He and other friends refused to accept my view that my life had no value, and they promised to help me as I struggled to come to terms with living not just with my disabling conditions, but also with extreme pain.
The second reason was that Colin and I went to India to visit a project for disabled children, which I had been supporting. That visit was to turn my life around.
I met the 50 children then cared for by the project, and immediately fell in love with them. Some are so disabled they can barely manage to crawl in the dust, some have learning disabilities, and others are blind. Most are unwanted and despised by their families and communities.
On that first visit, the children called me “Mummy.” They hugged me and loved me, and as I was playing with them, I suddenly loved them all, overwhelmingly and fiercely, as if they really were mine. When we left I said to Colin “I think I want to live.” It was the first time I had thought that for over 10 years.
Colin and I then set up a registered charity, Enable (Working in India) to help the children, and now I am the proud “mother” of 550 children – with more on the way!
I am completely devoted to “my” children, and have learned their language, Telugu, so they can tell me their problems and worries, hopes and dreams, just as they would an “ordinary” mother.
Now I want to live, for myself and for “my” disabled children. I believe that both they and I and all suffering people have infinite value, regardless of our difficulties.
What I wish most for those who despair of life, is that they could have the sort of support, and the sort of reasons for hope, which turned my life around and brought me from the brink of death to an appreciation and enjoyment of life.
Sometimes it’s said that those who request death are just exercising their “right to choose.” The problem is that often they feel they really “have no choice” because support mechanisms are not in place. And of course they are not just “choosing” for themselves. To say that death is in the best interests of some suffering people is to make value judgements about all who are disabled or terminally ill, and to suggest that death is a legitimate way of dealing with suffering. We can do better for suffering people than killing them, but legalising medical killing would militate against the further development of social and palliative care services to help us to live.
Once it is established that it is acceptable to cause death as a way of “preventing suffering” no sick or disabled person will be safe. It is instructive that when a non-disabled person expresses a wish to die, every effort is made to save their life. We have Government strategies against suicide, and “suicide prevention teams” to try to save the lives of those who want to die. Yet when sick or disabled people express the same wish, possibly for much the same reason as those who are not physically affected, they are often assumed to be “right to want to die” and “better off dead.” What we really need is the same presumption in favour of life as is routinely given to the non-disabled, and the same help and support to live with dignity until we die naturally.
I’m glad now that I didn’t succeed in committing suicide. I enjoy the privilege of being able to give “my” disabled Indian children a better life, while recognising that they gave me the greatest gift of all, because they actually saved my life.
If Lord Joffe had succeeded in getting his Bill made law, I would truly have missed the best years of my life.
Alison Davis 20th May 2006
