“Supporting us to live should be a greater priority” – Disabled activists rally against UK assisted dying bill

Anti-assisted dying campaigners gather outside the Houses of Parliament in London, UK this morning. 29 November 2024. by George Fielding.

MPs vote today on a law giving terminally ill people in England and Wales the right to a medically assisted death.

Disability rights activists fear the bill could become a ‘slippery slope’ that risks encouraging vulnerable people to die instead of providing effective medical and social

support.

If passed, the Terminally Ill Adults (End of Life) Bill will allow medical assistance for over-18s making a voluntary decision to end their life provided their death “can reasonably be expected within 6 months”. Approval will be required from two independent doctors and a high court judge.

Paula Peters, a disability rights and anti-assisted dying campaigner, said she worries about the timing of the bill.

“I'm opposed to it because our services are in a dire mess. Our healthcare is in crisis, social care is broken,” she said.

“Now is not the time for a bill like this. We need to fix our services first.”

This year, the Joseph Rowntree Foundation reported that 31% of UK disabled people were living in poverty compared to 22% generally.

In July, Healthwatch reported up to 1.5 million disabled people in the UK could be missing out on needed social care support.

“This bill is set against a background of increasing hostility faced by disabled people,” Peters said.

“The fundamental support systems needed to deliver decent services have been eroded over the last 15 years. Supporting us to live should be a greater priority.”

MPs planning to vote against today’s bill have cited the current state of UK health and social care as reasons to oppose its passage.

Health and Social Care Secretary, Wes Streeting MP said he plans to vote against the bill. He said he fears coercion when speaking at the FT Weekend Festival in September.

“I do not think that palliative care, end-of-life care in this country is in a condition yet where we are giving people the freedom to choose, without being coerced by the lack of support available.”

Currently six countries across Europe have legalised assisted dying in some form: Austria, Belgium, Luxembourg, the Netherlands, Spain and Switzerland. Unlike today’s bill covering England and Wales, help to die is not solely restricted to the terminally ill in any of these countries.

In October, The Telegraph reported 54 cross-party MPs were calling for a widening of the bill beyond terminal illness to include those ‘incurably suffering’.

Trevor Moore, chair of campaign group My Death, My Choice, hopes the bill will be expanded once assisted dying becomes socially established.

“We have to face the bill that we have,” he said, “I think what's been shown in other jurisdictions is that once assisted dying is there, it becomes very accepted.”

Opposition groups point to Canada, where access was broadened to include those experiencing incurable, intolerable suffering five years after assisted dying was first legalised for terminally ill people in 2016. Plans to expand access to people suffering from mental illness have been pushed back to 2027.

Others point to jurisdictions like Oregon, where medically assisted dying was legalised in 1997 and has since remained strictly available only to the terminally ill.

George Fielding, 29, was born with cerebral palsy, a neurological disorder affecting his movement and coordination. He said potentially expanding legislation risks implementing assisted dying as a solution to problems better treated by effective health and social care services.

“Because I've got cerebral palsy, I've got incurable suffering. What I've got is incurable, but I live a bloody god damn life, and I love it. But I may not love it if I was an alcoholic.

“I want my alcoholism, if I ever have it, to be treated. And I want people who acquire their disability to be treated,” he said, “But we have to fund it.”

“We have not given people assistance to live, yet we’ve jumped to assistance to die.”

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Sarah Tarlow, Professor of Historical Archaeology at the University of Leicester, said she hopes the bill will later be expanded to include “unbearable suffering with no prospect of recovery,” because of her late husband Mark.

“I don’t actually see the sense in being able to curtail a short period of suffering but not a long one,” she said.

“I still think any liberalisation of our dying laws would have to be an improvement and will prevent a lot of people dying bleak lonely deaths.”

Mark chose to end his life in 2016, five years after first developing symptoms of a degenerative neurological condition. To prevent her violating laws banning assisted suicide, Mark waited until his wife and three children were out before ending his life at home.  

Mark’s diagnosis was not terminal, meaning he would remain unable to access a medically assisted death under the new bill.

“The way that Mark died still makes me very angry.” She said, “because assisted dying is illegal, he had to die on his own, and the solitude and the bleakness of that death really upsets me.

“Nobody should have to die on their own. You should always be able to have somebody you love sitting with you. Holding your hand, if that’s possible.”

When opening Today’s parliamentary debate backbench Labour MP Kim Leadbeater, the bill’s sponsor, said the bill will remain solely applicable to those with terminal illness.

“Let’s be clear we are not talking about a choice between life or death, we are talking about giving dying people a choice of how to die,” she said.

The vote is due to take place at 2.30pm this afternoon. MP’s have not been instructed on how to vote by their parties.