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Tom Shakespeare

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Tom is a Research Fellow at Newcastle University. His non-fiction books include Genetics Politics: from Eugenics to Genome and The Sexual Politics of Disability.

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Death by nonsense

8th March 2009

This month, I am reporting on three forms of nonsense. Sadly, not for reasons of humour, but solely because I find them deeply frustrating. First, let me draw your attention to the Coroners and Justice Bill, which is currently wending its way through Parliament, and will be going into Report stage in the House of Commons at the end of March.
The Houses of Parliament
Staggeringly, this is the forty-eighth criminal justice bill which the Labour government have, in their wisdom, imposed on the citizens of Britain. It contains 160 clauses and covers a wide range of utterly distinct issues - from internet security to homophobia to the organisation of coroners services to the law on murder and suicide. Putting together such diverse and unrelated issues in one bill looks to me like a nonsensical approach to legislating.

What this ragbag Bill fails to include, and here comes my second nonsense nomination, is a much needed and humane clause liberalising the suicide legislation to permit assisted suicide for terminally ill people. Despite the fact that 80% of the public want to see a change in the law (according to the 2007 British Social Attitudes survey), Parliament has consistently failed to move forward on this issue. Which means, as with the recent case of Debbie Purdy, that people who are dying of terminal illnesses such as multiple sclerosis, motor neurone disease or cancer are forced to travel all the way to Switzerland to achieve the right to die.

Opposition to liberalising the law is largely, but not exclusively, a matter of faith groups imposing their own minority beliefs on the majority. It also includes some prominent palliative care specialists, who appear to believe that the solution to these difficult and undignified deaths is more palliative care. While more hospices are undoubtedly needed, the sad truth is that some deaths will involve considerable suffering, despite the palliative medicine.

I believe it is rational for people to want to avoid pain and indignity, and have a good death at a time of their own choosing.

Proposed British legislation would be modelled on the successful Oregon law. In Oregon, liberalising assisted suicide has not been a step on the so-called slippery slope: assisted suicide deaths remain low at just 0.15% of all deaths. Safeguards in recent British proposals have ensured that candidates fulfil the following criteria: being terminally ill; suffering unbearably; having been offered more palliative care; having made repeated requests for assistance; not having depression or mental illness; proving that they have not faced pressure from family or friends; discussion with several doctors, including an independent doctor.

Advocates of assisted suicide will continue to press for a change in the law, either through the Coroners and Justice Bill, or through a subsequent Private Member's Bill. But I can predict that next time the issue does come to Parliament, disabled people's organisations will oppose the measure, and MPs and peers will point to opposition from disabled people as one important reason to vote it down.
Interior of the House of Commons
And here Is the third piece of nonsense. Disabled people do not oppose assisted suicide.

A poll for the Disability Rights Commission found that 60% of respondents favoured changing the law. A 2004 YouGov survey found that 80% of disabled respondents supported assisted suicide legislation. And this makes logical sense - disability activists have always demanded more control and choice in life. This must apply at the end of life, as it does at all other points.

Everyone is entitled to their opinion about assisted suicide: it is a complex and emotional issue, and some people have deeply held spiritual beliefs on the matter. Others have genuine fears that disabled people will be pressurised into requesting death. I believe that there are sufficient safeguards, and that disabled people are competent to decide for themselves.

Disability activists and disabled people's organisations rightly oppose the idea that disability is a fate worse than death. They do not want people to kill themselves when they become paralysed or diagnosed with a disabling illness. Nor do I. That's why individuals like Daniel James, the Worcester rugby player who became spinal cord injured, should be supported to live, not encouraged to die. That's why assisted suicide legislation must only apply to the terminal stages of terminal illness. At that point, it's not about independent living or better services or civil rights: it's about removing the fear of a nasty death, and empowering people to have control over their final days.

Disability organisations have always claimed to be more representative of disabled people's opinions than the traditional charities. But at least on this issue, they are not. They do not reflect the democratic will of ordinary disabled people. They have not acted to promote balanced debate. They do not acknowledge that they are out of touch with their constituency.

Disabled people have a diversity of opinions on assisted suicide. But a majority support carefully regulated end of life legislation that allows people choice about death in the context of terminal illness. I hope that the next time that assisted suicide is debated in Parliament or in the media, we will not hear yet again this patronising nonsense that disabled people are opposed to liberalising the law.

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