Disabled people ‘plead for our lives’ in front of MPs and peers, as assisted suicide bill ends key stage

Disabled people with progressive and terminal conditions have come to parliament to “plead for our lives” in front of MPs and peers, as a bill to legalise assisted suicide in England and Wales finishes a key stage in the Commons.

They told parliamentarians that disabled people were still “missing from the conversation” on assisted suicide, as the terminally ill adults (end of life) bill ended its committee stage.

Monday’s meeting was organised by the disabled people’s organisation Not Dead Yet UK (NDY UK), and it saw a string of disabled people attend a meeting in the House of Lords to tell their stories of how legalisation would put their lives and those of other disabled people at risk.

The disabled crossbench peer Baroness [Jane] Campbell said NDY UK believed disabled people were “a cohort of people who are missing from the conversations” on the bill.

She said: “Most of the people in the room today will be affected by the bill.

“We feel that our lived experience of living with progressive and terminal conditions should be heard but not only heard but we should be at the centre of this conversation.”

But she said it was “very difficult” for disabled people opposed to the bill to get their voices heard by MPs and peers.

She said they “do not hear our voices because they meet far more people just like them.

“The predominant voice… is that people like us should have a right to die.

“They do not consider even for a minute that we are struggling even to have the right to live every day of our lives.

“We do not enjoy coming here today to plead for our lives. It takes away our humanity and it gives us no sense of self-dignity.

“For us, this is almost like the last straw. Now is about our right to breathe and survive and live and have value.”

Among the MPs who attended were Labour’s Neil Coyle, a director of policy and campaigns for Disability Rights UK before he became an MP, and senior Labour MP Dame Meg Hillier, as well as crossbench peer Baroness [Ilora] Finlay and Labour’s Baroness [Kay] Andrews.

Coyle said he would be voting against the bill and that he “shared many of the concerns” that had been outlined in the meeting.

The meeting heard from disabled actor and activist Liz Carr, whose award-winning documentary* about assisted suicide, Better off Dead? – broadcast by BBC1 last May and still available to watch – explained the dangers of legalisation to a mainstream audience.

She said disabled people were often told that the bill “will not touch us, it is not about us, and we are shut up because of that”.

But she said: “Even if the definition stays incredibly tight on this bill at the beginning, we are pretty sure, using the experience of other places, that it will extend, but even as it is now, terminally-ill people are disabled.”

She said: “Even if this bill remains as terminally-ill, our voices can show you and teach you… that there are real concerns about handing this over at this time to an NHS and social care system… that is struggling.”

Nicki Myers, who receives palliative care through NHS continuing healthcare funding, and support from her local hospice, spoke to the meeting through a video recording.

She said: “What I worry about most with this bill is that it will change my relationship with doctors and the medical profession as a whole.

“I would be constantly questioning whether these people really wanted to treat me or not.”

Mike Smith, former disability commissioner of the Equality and Human Rights Commission, who has a progressive neuromuscular condition, said: “In a perfect world, I would actually like the choice if I have just got told, ‘you have six months to live’, but it’s not a perfect world and I really don’t think that my so-called right [to an assisted suicide] is more important than other people’s right to be protected from coercion.

“I don’t see how we can make a decision [on legalising assisted suicide] at this moment in time with the state of palliative care, the NHS… and social care.

“Knowing the challenges that the majority of disabled people face, I would be really scared if they passed this legislation, and knowing that if they do so, state-sponsored death is going to be the solution to those problems.”

Chelsea Roff, a researcher and founder of the US-based charity Eat Breathe Thrive, who had a stroke due to severe anorexia as a teenager, gave evidence to the Commons committee currently debating the bill.

She co-wrote a research paper that found that at least 60 women with eating disorders, many in their teens and twenties, had died by assisted suicide in Belgium, the Netherlands, and the United States.

This included Oregon, the US state where assisted suicide is restricted to those who are terminally-ill, just as with the bill MPs are examining.

She told Monday’s meeting: “I think eating disorders have in some ways been the canary in the coalmine to go, ‘Everything disabled people have been saying about this is true: the definition of terminal illness is very loose in practice.’”

Despite this and other evidence shown to the committee, every amendment put forward by eating disorder charities to try to ensure people with those conditions do not qualify for an assisted suicide under the bill was rejected by the committee, she said.

Roff said: “They chose not to do that, having looked at the evidence.”

She said the committee – which has a strong majority in favour of legalisation – chose to believe instead that no-one with anorexia would ever be called untreatable, even though Roff herself was pronounced untreatable as a young person and “was so close to death I could taste it”.

She said: “If this had been available to me when I was ill, I would 100 per cent have taken it.

“I begged the doctors to let me die, I did not want to live, I thought I didn’t have a life worth living for anymore.

“So I am very worried about this bill. I have huge doubts about the safeguards.

“I am worried that those pushing it through have not looked closely at the evidence and not looked closely at the wording of the bill.”

The meeting also heard about the experiences of Rosy Bremer, from Portsmouth, who has motor neurone disease, and whose story was told by her friend, Rev Wendy May Jacobs.

She had been forced to rely on friends and family on a care rota after her local council only agreed to provide her with 12 hours of support a day, even though she could not move from her chair or eat without assistance.

They later crowdfunded more than £23,000 to pay for £8,000 of extra care a month when the rota could not be sustained.

The “shock and humiliation of being denied what she needed” left her “intensely anxious about the future” and “traumatised and deeply depressed”, and eventually she was forced to move into a care home when her condition worsened.

Rev Jacobs told the meeting: “This betrayal of Rosy by our health and our care system has taken a terrible toll.”

She said her “resilient, hilarious, gracious friend” had been left “really broken by the cruel inadequacy of our healthcare system.

“For me it is horrifying hearing about the proposed assisted dying legislation when so many are not even given sufficient assistance to live in dignity and safety with all the challenges you face.”

Sophia Kleanthous, an Inclusion London trustee and a disabled campaigner who ended up in supported accommodation when she was homeless and suicidal, said she had experienced mental and verbal abuse and had seen how other disabled people had been treated within a service that is “already at breaking point”.

She said: “That’s a fear that I fundamentally have – if I had been offered [assisted suicide] when I was in that state, I don’t know if I would have said no.”

Kevin Caulfield, former chair of Hammersmith and Fulham Coalition Against Cuts, which played a key role in campaigning for an end to care charges in the borough, told the meeting that there was “systemic and societal coercion in every aspect of our lives”, while social care provision is “threadbare”, and many health services are “on their knees”.

He said access to quality end-of-life support was “extremely limited” and “for many of us that results in a feeling that we can’t afford to go on living”.

He said the bill’s safeguards were “mostly an illusion” because “in reality, society is unable to regulate against the impact of societal coercion and abuse”.

Caulfield said he had been diagnosed with a terminal condition in 1997 before his condition started to stabilise.

But he said: “If assisted dying had been on the menu and my doctor had put it on the table for discussion, I might well have gone for it.”

Dr Miro Griffiths, who is co-director of the Centre for Disability Studies at the University of Leeds and has a progressive condition, told the meeting via a recorded video message: “The danger is that if you are trying to access support or trying to access medical practitioners to support you then having a permanent question about whether you should have your death facilitated by the state or have your death accelerated by the state means that you are in a very vulnerable and dangerous position.

“While there are arguments for having freedom of choice and personal autonomy to make decisions over your life, we must remember that the role of the state and the role of legislation is to protect the majority of people, and individuals do not have complete control to do what they want, when they want, because there is a need to provide safety and security for the collective.”

He said that by defeating the legislation “we can focus our attention on making sure that individuals receive sufficient support to live the best quality of life that they can as their needs progress over time”.

He added: “There is the opportunity to defeat this, and it’s important that we recognize there is an alternative world which we can build, which is more inclusive, more accessible, more participatory, and more safe for disabled people.”

The meeting came as the Guardian reported how a group of Labour MPs opposed to legalisation had called the bill “irredeemably flawed and not fit to become law” in a letter to their parliamentary colleagues, saying “significant new risks” had emerged during the committee process.

Meanwhile, the Isle of Man parliament has passed a law that will give terminally-ill adults the right to choose to end their own lives, the first British parliament to do so. The bill will now be sent for royal assent.

Under the Isle of Man bill, adults with 12 months or less to live will be given the right to choose to die, if they are over 18, and have lived on the island for five years.

*This week, she won presenter of the year award for the documentary at the Royal Television Society Programme Awards

Picture: Members of Not Dead Yet UK and supportive parliamentarians pictured outside parliament before the meeting

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