The tragic death by assisted suicide of a young rugby player who chose to die because he'd been rendered paralysed raises all sorts of difficult ethical issues
Matters of life and death have been preoccupying me a lot recently. On New Year's Eve, as the minutes ticked down to midnight, I couldn't help thinking about Daniel James, the talented young sportsman who became paralysed from the neck down in a rugby accident.
He didn't live long enough to see the arrival of 2009. Unable to face the prospect of spending the rest of his life as a tetraplegic, he travelled to Switzerland last September so he could undergo an assisted death.
His case raises many moral questions and I do not claim to have the answers. I don't possess any special philosophical or ethical expertise. However, I am tetraplegic myself and, having read the views of many able-bodied people on the subject, I feel it's important as many disabled people as possible make a contribution to the debate regarding the law on assisted death.
At present under British law it is a criminal offence to 'aid, abet, counsel or procure' another person's suicide and those who do assist can face up to 14 years in prison (although no one has so far been convicted of helping someone to travel to a Swiss clinic for an assisted suicide).
In recent years the media spotlight has fallen on a number of disabled individuals who have expressed a wish for an assisted death - people like Diane Pretty, Debbie Purdy and Craig Ewart (whose death provoked controversy when it was shown on national television). What the Daniel James differs is that he was not terminally ill. He was only 23 and if he had not killed himself, he might have lived a normal lifespan.
Daniel chose to take that deadly concoction of chemicals not because he wanted to avoid a long, painful and distressing death but because he simply didn't want to carry on living.
It's vital, when discussing assisted death, that we distinguish between those disabled people who are terminally ill and those whose disability is not life-threatening. The ethics involved are very different.
Should Daniel James have been granted his request for an assisted death? Should a severely disabled person be helped to take their own life because they strongly object to living as a disabled person?
It's at this point that we enter an ethical minefield. I always approach issues involving disabled people from the perspective of disability rights. But in the case of Daniel James we suddenly find different principles colliding.
At the heart of the disability rights movement are the values of equality and freedom. Most of us now believe that disabled people should have the same opportunities and choices as non-disabled people. Today in this country it's almost universally accepted that disabled people have a right to life once they've been born. But if disabled people have a right to life then do they also have a right to death?
An able-bodied person can take their own life without anyone else's assistance but it is almost physically impossible for someone who is completely paralysed to die by suicide. If a tetraplegic person wants to end their life and society denies that person an assisted death then society is forcing that disabled person to go on living against their will.
This seems to undermine a disabled person's independence - their right to make choices for themselves. So according to this argument, the professionals who helped Daniel to die were correct in supporting his right to self-determination. As Daniel James's mother wrote so movingly: "Our son could not have been more loved... This was his right as a human being. Nobody but nobody should judge him or anyone else."
However, another fundamental principle of the disability rights movement is that a disabled person's life is as valuable as that of an able-bodied person. It is wrong for anyone to make judgements about the quality of life of a disabled person. Many disability rights campaigners would argue allowing a tetraplegic person an assisted death sends out an official signal we as a society believe a tetraplegic person's quality of life is so low we regard that person as better off dead. They say changing the law in this way would reinforce the mistaken assumption that a disabled person's life is worth less than an able-bodied person's life.
There is a second important reason why many disabled people oppose assisted suicide for those with decades of life ahead of them. Death is irreversible. (I realise I'm stating the blindingly obvious here). Once you've died, you can't bring yourself back to life. You can't change your mind.
Daniel James chose to die by suicide only 18 months after becoming disabled. This might strike you as a lengthy period but adjusting to being tetraplegic is a complex process that can sometimes take several years. Eighteen months is no time at all.
Clearly Daniel James was determined to end his life at that particular moment but would he have still felt the same way one year, two years, three years later? Believe it or not, there is some evidence to suggest that a majority of disabled people rate their own quality of life not only higher than able-bodied people rate living with a disability but also higher than able-bodied people rate their own non-disabled lives.
It is also necessary to consider the impact of Daniel James's assisted death on others. His death troubles many disabled people because it sets a precedent.
If we assume for the moment that Daniel James would have continued to feel suicidal in the future, then it could be argued it would have be cruel to force him to stay alive against his wishes.
But what's in the interests of one individual may not be in the interests of society as a whole.
In the months immediately after suffering a spinal cord injury, a person can be very emotionally vulnerable. It's pretty common for a newly paralysed person to feel disillusioned and overwhelmed by their situation, and occasionally this can lead people to contemplate suicide. (Soon after his riding accident, even the actor Christopher Reeve considered ending it all, until his wife persuaded him that he should carry on living.) But at the moment it is extremely rare for a paralysed person to actually go ahead and die by suicide.
Could this situation change? History shows us that social practices can evolve drastically in a relatively short period of time.
Only 50 years ago, homosexual acts were illegal and there was a huge stigma attached to having children outside marriage. Now gay couples can celebrate a civil union and 40 per cent of children are born to women who have not tied the knot.
Is it possible that attitudes towards assisted death and disability could undergo a similar transformation in the years ahead? Could we reach a point where it is regarded as normal for a tetraplegic person to commit suicide? And as the population ages and pressures on social care services grow, could the authorities regard legalising assisted death for severely disabled people as a convenient means of reducing the demand on an increasingly tight care budget?
It seems unlikely that this dystopian vision will turn into reality in the near future. The experience of Oregon and the Netherlands, where the law on euthanasia has been liberalised, indicates that only a relatively small minority would choose assisted suicide. But nevertheless, there are real worries amongst disabled people that the Daniel James case, and the extensive coverage given to it by the media, could encourage other disabled people to kill themselves.
What is beyond doubt is that Daniel James's death makes many disabled people feel uneasy. It's an issue which evokes strong emotions. The disabled academic Tom Shakespeare has written: "Newly disabled people need time, support and above all good independent living, assistive technology and full human rights, rather than assisted suicide".
Similarly, Paddy Masefield, a campaigner for disability equality, has declared: "Let us never accept that using a wheelchair to move around, or the need to have a bottom wiped - as it was in infancy and probably will be in old age - is a serious reason for suicide."
While politicians' minds are focused on dealing with the economic downturn, issues like assisted death, which have fewer votes at stake, will stay on the parliamentary backburner.
In the meantime, outside the Commons, momentum seems to be growing for a change in the law to allow assisted death in cases where a person is terminally ill. However, a consensus is emerging that a separate debate needs to be had before assisted death is legalised for people who are simply disabled and not suffering from a life-threatening condition.
Given enough time, people who suddenly become paralysed can adjust to their new circumstances. There are many people, like me, who provide proof of this. On the other hand, not everyone reacts in the same way to the same challenge. What is clear is that whenever a tetraplegic or paraplegic person follows Daniel James's example, it constitutes a heartbreaking waste of life and a personal tragedy for every family involved.
View from my wheelchair - Victoria Brignell on life as a disabled person.
About the writer
Victoria Brignell works as a radio producer with the BBC. After reading classics at Downing College, Cambridge, she undertook journalism training at Cardiff University. She lives in West London and is 30 years old and is a tetraplegic wheelchair-user.
New Statesman, 30th January 2009