My friend, Alison Davis, represents the best possible reasons for changing the law to allow euthanasia or assisted suicide. Those wanting to change the law have based their campaign on highly-charged, emotional personal stories of suffering people like Alison, but they never present her story – because it also contains, paradoxically, the most compelling reasons against changing the law.
Born in 1955, Alison was about 30 when she wanted to end her life. She was born with the disability spina bifida, and used a wheelchair. Unlike most people with her disability, the deterioration of her spine caused a pain that became uncontrollable and unbearable. She would pass out from the pain and when she revived, she would be unable to see or hear – usually for a short period of several minutes, but sometimes for hours, and even once for a couple of days.
I got to know Alison in January 1988, and witnessed her pain countless times. I have never seen anyone bear such pain. The anticipation and the experience of the pain was frightening for her. Alison taught me to fingerspell so that I could communicate with her when she couldn’t see and hear.
In addition to the pain, Alison was doubly incontinent, constantly nauseous, had osteoporosis causing broken bones, and was subject to frequent infections. The wretchedness of her life was obvious. Alison wanted to die. She tried to end her life several times. In 1989 her hospital consultant ruled out the possibility of corrective surgery on her spine as it was too dangerous to attempt. Doctors anticipated that her life expectancy was a matter of months. In August 1989, I decided to interrupt my university course to assist Alison in the final stage of her life. This would be no longer, I thought, than the end of that year. I had no idea I would remain as Alison’s full-time assistant and carer until her death in December 2013.
If there had been a law to allow assisted suicide or euthanasia during the 1980s, Alison would have welcomed it, would have qualified for it, and her life would have been ended. Many hearing the circumstances of her life and horrendous suffering would have applauded the ‘humanity’ of such a law, and proclaimed that for someone suffering as Alison did, with no possibility of improvement, living in such a wretched state, it was ‘compassionate’ to let her ‘die with dignity.’
Nobody would have known that Alison would still be alive more than 25 years later – the prognoses of doctors can be seriously wrong! – and that she would become an implacable opponent of “right to die” laws.
Alison’s subsequent opposition to ‘assisted dying’ laws, based on an exceptional experience, deserves to be heard. Unlike many of the high profile advocates of ‘assisted dying’ she actually knew what it was like to greatly desire death. And her change of mind about the rightness of an ‘assisted dying’ law began even when she still wanted to die.
Alison wanted to die for ten years between 1985 and 1995. For the first five or so years she made serious attempts to end her life. However, from about 1990, even though she still longed to die, two reasons convinced her that ending her life would be morally wrong. First, she said that the encouragement to live that she had received from me and others had made an impact on her. Secondly, she said that if a friend of hers wanted to die, she would think there must be a better alternative. She accepted that if she would do everything possible for suicidal friends to help them to re-establish a will to live, then logically she should extend that same attitude towards herself, even though she was convinced her situation was hopeless.
If there had been an assisted suicide law in the 1980s it is unthinkable that I could have given Alison the sort of support she needed and later welcomed. After a (short) while, my encouragement for her to live would have been regarded as cruelty if the law had said she was entitled to end her suffering by ending her life. If assisted suicide ever becomes an option, then it will be regarded as legitimate an option as any other. The vulnerability of those who want to die is increased by the existence of a law that presents suicide as a valid option.
And then – totally unexpectedly – Alison discovered a will to live, after we visited a project for disabled children in south India in 1995. Alison ‘fell in love’ with the children and wanted to help them. The night we left the project, after our short visit, Alison said to me. “You know, I think I want to live.” She said it was the first time she had wanted to live in ten years. Alison set up a charity, and went on to support many hundreds of disabled children and young adults, who would get to know and love her as “Mummy Alison.”
Importantly, Alison’s physical health did not improve. In fact, as the years advanced her health deteriorated further with a variety of conditions, and her pain was, as she put it, “unbearable, except that I have to bear it.” What changed was Alison’s outlook on life.
What is the rationale for allowing someone to terminate their life? Nobody is advocating for the self-termination of a “fit and healthy” 30 year old woman who might desperately want to end her life. Alison came to recognise that the restriction of assisted suicide to specific targeted groups – such as those who are dying, disabled or chronically ill – was deeply prejudicial. It assumes that these people are uniquely “right to want to die” but in fact the vast majority of them do not actually want their lives to be ended prematurely.
Alison thought advocates of assisted suicide were motivated by false compassion. She said that true compassion entails immersing oneself in the suffering of others, not in terminating the person to end suffering. Compassion does not tell suffering people that their situation is hopeless but demonstrates hope by pledging never to abandon them. Where there is life there is always hope.
Alison recognised that there would have been fatal consequences for herself if there had been an assisted suicide law in the 1980s. Hundreds of disabled children in India, Alison’s many friends, and not least myself, are eternally grateful that there was no such law.
Alison Davis – the most compelling advocate for and against ‘assisted dying’
