Disabled campaigners who protested outside the House of Lords have explained why they are so alarmed by the possibility of assisted suicide being legalised for the first time.
As many as 200 protesters, including scores of disabled people, attended the protest in Westminster on 18 July, just yards from a much smaller protest by campaigners backing Lord Falconer’s assisted dying bill.
The two protests took place as peers took part in a marathon second reading of the bill, which would make it legal for doctors to help end the lives of those they judge to be terminally-ill, if the individual requests such help.
The protest by campaigners opposed to the bill was organised by the disabled-led organisation Not Dead Yet UK, with support from other campaign groups, while the pro-bill protest was backed by the charity Dignity in Dying.
Artist Katherine Araniello said she believed that disabled people’s lives were under threat, and that the media were heavily on the side of the pro-euthanasia campaigners, although she was reassured that there were “certainly more visibly disabled people on the side of wanting to live” at the two protests.
She said that defeating the bill was probably “the most fundamental issue” facing disabled people, because “if we are dead, nothing else matters”.
She said: “I see myself here today as protesting to save my life and everybody else’s life… We are all terminally-ill, we are all going to die at some point.”
She said it was deeply ironic that 20 years ago, she was protesting to make buses accessible and “now, 20 years on, I am protesting to save my life and other disabled and elderly people’s lives”.
Araniello criticised the 14-day cooling-off period proposed in the bill for those who “want to be euthanized, which is less than you get if you buy something from a shop”.
Her art has frequently been aimed at exposing the arguments of those who push for legalisation of assisted suicide, including one of the characters in her upcoming performance of The Dinner Party Revisited, at The South Bank Centre in September.
Another disabled campaigner, Sue Jamieson, from Basildon, told Disability News Service that protesting was “very important”.
She said: “I don’t want Falconer’s assisted dying bill to win. There will be no more need for kindness and compassion.”
She said: “Throughout my life I have had to fight other people’s prejudices against me but with the help of my parents and other far-sighted people I survived to become the person I am today.
“If Lord Falconer’s bill is legalised, both my world and many others’ worlds will be plunged into darkness.”
Mike Smith, former disability commissioner with the Equality and Human Rights Commission, said he was encouraged to see many more disabled people protesting against the bill than supporting it.
He said: “They are generally fearful for their lives and the support they would get once society says ‘we can’t afford to support you but we can afford to kill you’.”
He said much of the support for the bill came from “a fear of living a life where you might need help being fed, you might need help rolling over in bed, you might need help having your arse wiped, and that is the reality of life for many disabled people”.
He added: “The protection of the rights of the many who are vulnerable to being coerced is far more important than the rights of a small number of people who cannot take their own life but want someone else to take it for them.”
Eleanor Lisney said she was particularly concerned about disabled people from minority ethnic communities, who might not speak English and could be relying on a relative to translate for them to a GP about a possible request for an assisted suicide.
She said that she was more worried about the possibility of a bill being passed than in previous attempts to legalise assisted suicide because of the current government’s “austerity”.
Lisney said: “We know that GPs are more sympathetic. They think you can’t possibly cope because there are no resources, especially if you are lying in your own shit.
“You would feel you want to kill yourself. Who doesn’t want an easy death?
“But I am just thinking of those people who don’t want that. The trouble with death is that it’s so final. You can’t change your mind later.”
Another leading activist, Bob Williams-Findlay, said the bill was about helping “the individual rather than what can we do as society for people who are in pain who need palliative care, people who need support”.
He said: “They might wrap it up in the language of choice but really it is all about ‘me, me, me, what I want to do’. It is a very narrow agenda.”
He was another who said he believed that fighting the bill was the most important current issue for disabled people.
He said: “I think it’s number one because basically if we go down this route we are committing suicide.”
Andy Greene, a member of the Disabled People Against Cuts steering group, was one of several disabled activists who attended the protest just weeks after protesting only a few yards away outside Westminster Abbey against the planned closure of the Independent Living Fund.
He said the two issues were “tied into each other because the rhetoric that has been used to sell social care and welfare reforms is exactly the kind of language that influences how people value disabled people when you start talking about scroungers, fraudsters and workshy”.
He said: “It is the same kind of language that influences the argument about people’s value in society and public worth. It influences how people look at an issue like assisted suicide.”
Greene was another protester who warned that the risk of the bill being successful was “the closest it has ever been”.
He said: “I don’t think it is unrelated to the present circumstances disabled people find themselves in. There is a direct correlation in what is going on around austerity and the rise in their side of the argument. All that rhetoric influences people’s perception.”
Presenter, broadcaster and writer Mik Scarlet said disabled people were constantly told that their fears about the bill were “unfounded”, but were never told why.
He said he believed they would fend off this bill, but the next time a peer or MP came forward with a bill it would be successful.
He said: “I think eventually it will happen and it will be a sad day when it does because there has been so much propaganda in favour and we are told we are being foolish.
“We cannot allow fear to shape policy in our country. People are so afraid of becoming ill or disabled.”
Human rights activist Tara Flood said she was sad that the few disabled people who openly supported the pro-euthanasia campaign had been “pushed to the front of the Dignity in Dying campaign as pawns”.
She said: “I think every disabled person at the moment probably has fears for the future. Everybody about to lose the Independent Living Fund is probably terrified of what the next few years look like.”
Flood said she thought the bill – if it became law – would be “just a stepping stone” to legislation that extended assisted suicide to an ever greater number of people.
She said: “I think if this goes through they will just up the stakes. This is just the start of it.”
Kevin Fitzpatrick, convenor of Not Dead Yet UK, said the bill “removes every single protection we have got and puts it in the hands of doctors and third parties”.
He said: “This wealthy lobby which has brought this bill back to life consistently says it is not about disabled people, yet every time you turn around, their poster boys are disabled people, and disabled people who are not terminally-ill.”
Another leading activist, Miss Dennis Queen, said she feared the latest bill was the most likely yet to become law.
She said of the peers debating the bill in the Lords: “I hope they are listening to us.”
She said the threat of legalisation was “one of the most important and fundamental issues” affecting disabled people, as it was “life and death”.
And she said she believed Lord Falconer and his supporters had picked a target group – terminally-ill people – that the public “will go for”.
She said: “There is more unease this time. I think this is the cleverest bill they have put forward in all my time as an activist.”
But there was also a handful of disabled people protesting in favour of the bill.
Greg Judge, a campaigns support officer with Dignity in Dying (DiD), said the bill would make it easier for terminally-ill people to die “whether they are disabled or not”.
He said he was “very optimistic” that the bill would become law, and believed a majority of peers would back the legislation.
But he admitted there were far more disabled people who had attended the “opposition protest” than the DiD protest.
He said: “They have been organising and coordinating their efforts for much longer than we have. Changing opinions takes time. It is quite clear that disabled opinion is not overly against a change in the law.”
He added: “It is undeniable that there is a genuine fear on their part that this bill would go on to cause harm to them but when you talk to them further about the detail of this bill not all of them have read the bill or understand the safeguards.”
He insisted that he was confident that the safeguards proposed by Lord Falconer in his bill would be sufficient to protect people from coercion.
He said: “Yes, I am confident that this will safeguard everyone who this bill is not aimed at.
“The detail of the bill states that in terms of their mental competency they have to have a clear and reasoned wish to have an assisted death.”
Judge said he did not believe that anyone would “give up an extra few months against their own wishes just for family advantage”.
He added: “The opposition will bring up all number of possibilities but when you look at the people who want this bill they want it for clear reasons, they are fearful of lack of autonomy and having to face unbearable suffering.”
Another disabled person backing the bill was Terence Carter.
He said: “In this country if you see a sick, injured and dying animal who cannot choose, you put them down, as a kindness… but someone with clarity of mind who is at the end of their life if they want to choose to end their suffering, as a kindness, they are prevented [from doing so].
“It is not about us trying to kill all disabled people, it’s about us giving them the choice.
“If I was dying I would choose to fight it and carry on but if the choice is there for someone else, if they want to give their loved ones a kind memory, of friends and family around them at home – basically if they are beyond anyone’s help – I think having the option would be nice.
“I had loved ones who were so intelligent, they had such a spark of life, they wanted to be remembered that way. It’s giving people the choice. It’s giving the person an out if they wish to.”
When asked if he accepted there was a risk of people being coerced into asking for an assisted suicide, he said: “You never know. There is risk in everything.”
Asked whether he thought it was a risk worth taking, he said: “I am struggling to think. It should not be about risk. I don’t see that happening.”
He added: “There are risks with anything. There is a risk that aliens could come down from the sky and attack and destroy everything. It’s a risk. It could happen.”
23 July 2014