Without a right to live, a right to die will soon become a duty

9th September, 2015 6:53 pm

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“If you’re demented, you’re wasting people’s lives – your family’s lives – and you’re wasting the resources of the NHS.”

This was the view expressed by Baroness Warnock a few years ago on the subject of euthanasia. Her comments exposed clearly that while the case for legalising assisted suicide is made on the grounds of the relief of unbearable suffering, it will open the door to a new duty to die – getting rid of the inconvenient – the old, the incontinent, the expensive.

It is a possibility that Rob Marris MP, whose private member’s Assisted Dying Bill would introduce doctor-assisted suicide, appears to have no problem with.

At the Westminster launch of his Bill at the end of July, Marris set out his views about people killing themselves because they feel they are a burden to others.

He said: “If someone thinks ‘I do not wish to be a burden’, then if they have mental capacity, they can make an independent decision themselves. I do not think the law should deny them that choice.”

I did a study tour a few years ago to countries that had legalised assisted suicide or euthanasia. In the US, I talked to people from the campaign group Compassion and Choices. Their strategy was very clear – push for 10-15 years with stories of people with the sort of devastating impairments that independent-minded opinion leaders most fear. Eventually, public opinion will change – and the law will follow.

I was in Luxembourg just after they changed the law there. The MPs who were pushing for it wanted it for children and people with dementia as well. But they knew they wouldn’t get it so they went for the softer target of the terminally ill.

I cannot tell you how painful this is for me and for many other disabled activists who have struggled to establish a decent and independent life for all disabled people – including and perhaps most importantly for those with life-limiting conditions.

We have moved from the segregated warehousing of disabled people in institutions to community support from local authorities for personal care needs; to the Independent Living Fund (ILF) and direct payments to enable us to employ personal assistants. To the chance to live not just exist.

Over time, disabled people have gained some sense of being considered fully human, valued, able to contribute – as partners, parents and children. To work. To be active in public life.

The reality is that we are only part-way through a journey to full civil and human rights and that such rights that we have are vulnerable to political change and economic expediency. The ILF was recently abolished; local authorities have had to slash adult social care budgets. Once, there was acknowledgement that, even if you could work, your options with an impairment were very limited. Now we have a sanctions regime and the disappearance of “social security” for everyone when they need it – replaced by “welfare”. The rates of poverty among disabled people are soaring, as is disability hate crime.

In the disability movement, we have always known that it is the social context in which we experience our impairments and health conditions that matters most. Laws, policies, behaviour, attitudes, opportunities, support – these are the things that determine our quality of life to a greater or lesser extent. Even at the margins, for those with just months to live, whether you have access to good end of life support makes a huge difference – as surveys of bereaved relatives regularly show.

The law should keep us all safe without discrimination. At the moment, it would be illegal to encourage or assist me to commit suicide, whatever the circumstances – even if I desperately wanted someone to help me kill myself. Changing that would alter our culture forever. If physical pain now, why not mental distress later? If terminal illness now, why not someone who will suffer for longer than six months?

And no one has yet explained to me how an assisted suicide law could operate without mistakes or abuse by relatives that share Baroness Warnock’s views. The very fact of Parliament putting the decision and the practice of assisting suicide in a clinical setting would encourage people to consider it.

Not Dead Yet UK and other disabled people campaigning against the licensing of doctor-assisted suicide certainly understand what it is like to suffer physical and psychological pain – and to have limited options. We know the impact, not just on ourselves but on those who love us. We hear constantly about the high price paid by family carers. The defining media narrative about disability is about suffering – ours and other people’s.

But how meaningful is the choice to die when being alive means being constantly confronted with how inconvenient and expensive you are – in money and time – to those that love you; to the taxpayer.

Is a new duty to die really something that Parliament wants to sanction by licensing unwilling doctors to decide who can die and supplying them with lethal drugs? Instead, shouldn’t we all be campaigning for that communal safety net of “social security” for anyone who needs it, and for good end of life care, including palliative medicine, for those at the end of their lives?

Liz Carr is an actress who has appeared in The ‘Silent Witness’ and she is an activist for Not Dead Yet

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