I was born with spina bifida, and have been a wheelchair user for 46 years. One thing that has always surprised me is how many people throughout that period have said to me, “It’s so sad you’re in a wheelchair,” and even at times, “You must have thought of killing yourself.” These comments are as infuriating as they are ridiculous. I’ve had ups and downs, like most people, in my personal and professional life. But I value those – and it is disappointing that others sometimes don’t.
I fear that the MP Rob Marris’s assisted dying bill, which will get its second reading in parliament on Friday, would exacerbate the assumption that because there may some things I cannot do, everything must be negative. The prospect of changing the criminal law on encouraging and assisting suicide, as this bill would do, fills me with dread.
It raises legal and ethical issues that have been debated for many years – yet to which I had given little consideration until I entered parliament in 2010. During a number of debates in the Lords, I heard a range of experts on the topic and now have a clear and informed view.
Many people wonder why disabled people are so concerned about a bill that appears to affect only people thought to have less than six months to live. But many disabled people have fluctuating conditions, with improvements and setbacks; and some at times could meet this rather hazy definition, even if they subsequently move outside it.
My colleague Jane Campbell, for instance, who has spinal muscular atrophy, has written about being told throughout her life to expect to die shortly. She is now in her 50s. Disabled people also have a stronger understanding than most about what it means to feel you are a burden to others, or to have assumptions made about the value of your life. Many of us are very familiar with the strengths and weaknesses of the NHS and view the prospect of doctor-assisted suicide, as proposed in Marris’s bill, with scepticism.
Disability, whether as a private or a public-policy issue, is the subject on which I receive by far the most correspondence. It is both a personal and highly emotive topic, and touches on the law, public policy and social attitudes. How those around us, including family and doctors, respond to its challenges, the support we receive in the form of social care or social security, and how the law protects us, are crucial. We need support, acceptance and encouragement to live.
At 70, my late father, Peter, underwent a foot amputation after surgical complications. There were suggestions that at his age being in a wheelchair was no life for him. Yet the time we had together after the operation was something I will always remember. In other words, his quality of life was misjudged.
Were assisted suicide legal, with assessments and lethal drugs supplied by doctors, it is easy to see how negative attitudes could influence people’s thinking when they are vulnerable, struggling with a devastating diagnosis and coming to terms with their own mortality.
The bill is officially for people with months to live. But prognosis is always, to some degree, a shot in the dark. A friend of mine was told they had a year to live, and died eight years later.
I know many – disabled people in particular – are worried about the implications of passing such a bill. Protecting people from mistakes and malice is something the current prohibition on encouraging or assisting suicide does well. The bill contains only vague qualifying criteria for assistance with taking your own life, such as having “a settled wish” or being free from undue pressure. But there is no provision within the bill about how robust decisions are to be made in such matters. It doesn’t make provision for any audit of deaths or for a regulatory body to monitor compliance. In short, the proposals are unsafe and unworkable.
Those closest to dying people, professionals in palliative medicine and others involved in end-of-life care, are among the strongest opponents of this legislation. They have firsthand experience every day of the vulnerability of dying people, and they have no wish to become involved in intentional killing. They know that giving everyone fair access to excellent end-of-life care can make all the difference to our experience of death.
So as we approach Friday’s debate, I urge MPs to understand the significance of the proposed change in the law. It would be a seismic shift in the way we choose to care for people at their most vulnerable. It would introduce discrimination into our approach to suicide prevention. And it would place doctors in the contradictory position of trying both to enhance life for as long as it lasts and deciding who can be supplied with lethal drugs to kill themselves.
