Written by Hannah Dunleavy

In The News

A matter of life and death

With MPs decisively voting against the Assisted Dying Bill yesterday, Hannah Dunleavy spent the day with the Not Dead Yet campaign to find out why it believes it was the right decision and why its position has nothing to do with religion.

Campaigners from Not Dead Yet assemble outside Parliament during the vote on 11 September.

Campaigners from Not Dead Yet assemble outside Parliament during the vote on 11 September.

It’s 8.30pm and I’m on the train home, looking at Twitter and reading tweet after tweet saying “why would anyone oppose this bill?”

Rewind 12 hours and I’m at the area around the statue of George V outside the Commons. It is already heaving with campaigners. In the pink corner are the supporters of Dignity in Dying; in the white Not Dead Yet, a group of disabled activists, who have been joined by other groups – including some faith groups – as well as interested individuals, such as the academic Dr Kevin Yuill, author of Assisted Suicide: The Liberal, Humanist Case Against Legalization.

Nikki Kenward of Distant Voices, a Shropshire-based group of able-bodied and disabled people who work through the arts to give a voice to people who find it hard to be heard, is watching an enormous puppet judge the group commissioned taking shape on the grass next to us.

I’ve seen a lot of talk of religion motivating the ‘No’ camp, so I ask her if that’s why she’s here.

“You just cloud the issue with religion and you enable the other side to say, ‘well, they’re all religious nutcases,’” she says.

“We’re here to support Not Dead Yet. Mencap’s Death by Indifference report showed some 1,200 disabled people a year are killed through ignorance and bad communication and it will carry on. It’s reflective of a society which asks if disabled people’s lives are really worth living.”

“Until we live in a world where there is equality, for people with illness or disability, for people of all ethnicities and sexualities, we can’t support this.”

Kenward raises the example of Colin Brewer, a councillor in Cornwall who suggested disabled children with high care costs could be treated in the same way farmers deal with deformed lambs “by smashing them against the wall” – Brewer was re-elected after making the comments – and television agony aunt Virginia Ironside, who said she would smother a disabled child on BBC’s Sunday Morning Live.

She’s is also keen to talk about the often raised – and often dismissed – issue of “the slippery slope.”

“If this Bill goes through, and I really hope it doesn’t, you’ve got a situation where somebody says, ‘I’ve a terminal illness and I want to die.’ Then someone comes along and says, ‘I’m seriously depressed, my pain is as bad as your physical pain, why can’t I be included?’ And indeed, in Oregon and Switzerland and Holland, they are included. We also know half the deaths in Holland are carried out with nurses and that assisted deaths are carried out without people’s permission in Holland (1) and Belgium (2).

“We’re not good at safeguards; look at what happened to children in Oldham, or Oxford. And in other countries, the safeguards didn’t last.”

I put it to Kenward that if people are in pain at the end of their life, allowing them to end it might be the most caring thing to do.

“It’s a strange sort of care,” she replies. “Old people are scared of loneliness, of what goes on in some old people’s homes and of pain. So what’s our reaction? To say, well you can be killed.”

not dead yet 7As the day progresses, in glorious and unexpected sunshine, I speak to disabled activist Juliet Marlow, who has come from Hampshire. She’s keen I report that not a single group representing disabled people supports the Bill.

“This is something I feel very passionately about,” she says. “Once assisted suicide becomes an acceptable choice for people who are dying, it will become expected. We’re already struggling to get decent quality care, palliative care, palliative medication, it’s all limited. I believe the reason people are so passionately supporting this Bill is because of those failures. We see it completely differently; we think those things should be improved, so people shouldn’t have to die in pain. This Bill shouldn’t be a cure for something.

“And if it’s passed, it will change the way we look at some people’s lives. We’re judging people who have pain – and a lot of us here today have regular pain – we’re judging their lives to be intolerable and we want to make the point that we know what it is like to need assistance and it is tough. But no tougher than other things in life, like dealing with loss of a loved one, or dealing with an abusive spouse. Ill people are being singled out as people whose lives aren’t worth living anymore and we dispute that.

“Until we live in a world where there is equality, for people with illness or disability, for people of all ethnicities and sexualities, we can’t support this.”

Marlow also raises concerns about abuse and coercion.

“Coercion isn’t always visible; sometimes it’s the tiniest little things over time. Sometimes your most valued loved ones can make you feel like you are a burden.

“And with the current political climate – shirkers versus strivers – we’re all starting to feel that society judges our lives as less worthy and we don’t want that enshrined in law. I feel I am being judged as unworthy because I cost the taxpayer money, like I am being constructively dismissed from life.

“We agree that people shouldn’t suffer at the end of their lives, but we know there is a much better way – to invest in a world-class palliative care system. I’ve got experience of this: my first husband died aged 25 and he had decent palliative and social care, and medication. He lived and died the way he wanted to.”

not dead yet 5As the day progresses and more and more people arrive – to support both sides – I speak to Alex Cowan about her concerns about the bill being passed.

“I feel very strongly against,” she starts. “I feel that we should be looking at strengthening ways people can live their lives well. I’m a disabled person; I need help from personal assistants, every day 24/7. I live what I think is a full and active life, but I can only do that with adequate help and support. Sometimes people hear about my situation and think they couldn’t cope with it, but the fact is, when you’re in my situation you can have a pretty good life, with the right help and support.

“I think this bill would be the start of something really negative. There are not adequate safeguards at all; I feel that has happened in other countries that have this legislation where assisted suicide has been opened up to other areas. We are so often unaware of the subtle and sometimes not so subtle pressures and exertions that can be put on disabled or elderly people to feel that they are a burden, that they might cost a lot to their family or society and that their life is worthless. And it isn’t.

“I feel very passionately that we should be focusing our energies on providing people with a good life. We should be showing disabled people in all our myriad of colours and achievements. And the media has a part to play in that because we’re not presented as someone who is desirable to have in the workplace, to have a relationship with. So often people see the negative representations of disabled people, especially women, and feel that their life, if disabled, would be absolutely awful, but that’s the reality of the life I live.”

“We’re not good at safeguards; look at what happened to children in Oldham, or Oxford. And in other countries, the safeguards didn’t last.”

Eventually, as 2.30pm (the time we’ve been told to expect a result) arrives, I manage to grab time with Not Dead Yet’s spokeswoman, the actress and activist Liz Carr. I ask if she’s happy with the turnout.

“Yes. Really happy.

“Two of the main people at Not Dead Yet are seriously ill and potentially about to die. One is a disabled guy that now has terminal cancer and the other is a great woman whose condition means she often gets chest infections that could kill her.

“There are so many different groups have come today. It’s so often presented as a religious issue, but there are many doctors who are opposed, as well as just regular people who just aren’t sure this is the right thing. And lots of disabled and terminally ill people, who – because of our experiences of healthcare and people’s assumptions about us – think we cannot allow this Bill to go through as it gives the message that our lives are less valuable.

“It also gives the message that ending your life by assisted suicide is a viable and acceptable option. It will become part of the buffet of options: you can have palliative care, you can go to Dignitas or, if this passes, you can end your life here. We’re not ready for that.

“I’ve visited all the countries in which assisted suicide is legal, partly to see how a culture affects the choices around end of-life care. For example, in Switzerland, they’ve actually had a law for years, it was originally about duelling. It says you can assist someone to die as long as it’s not for selfish reasons. It was nothing to do with how it’s being used now.

Liz Carr (right) at the protest.

Liz Carr (right) at the protest.

“All sorts of things affect why a nation legalises assisted suicide, whether it’s a secular country, or religious, whether there is a tradition of looking after people within families. Laws don’t happen in isolation and I look around and I look at people’s lives being shat on, for want of a better phrase, disabled people, old people, poor people, minority people, and I’m seeing us devalue lives. We’re not offering the healthcare options that people need. If people were currently getting a good end-of-life experience, we could look at this. At the moment, absolutely no way.”

Having spoken to people who have direct experience of assisted suicide, Carr is keen to point out that many facts have not been brought into the public debate. She’s surprised to learn that I didn’t know that in Belgium, assisted suicide for children is now legal. She also tells me of a woman she spoke to whose husband had taken 21 hours to die after receiving his injection.

“If you say to anyone, do you want a pain-free death, with dignity, people are going to say yes to that. I’m saying yes to that too. That’s 100% of people want a good death, for ourselves and everyone else. Where we disagree is how we get that.”

At that point, a riot of noise erupts around us. The Bill has been defeated and while Not Dead Yet campaigners hug, the mood seems to be an overwhelming sense of relief.

“It’s so often presented as a religious issue, but there are many doctors who are opposed, as well as just regular people who just aren’t sure this is the right thing.”

I find Sian Vasey in the crowd. She’s been concentrating her activism on lobbying MPs, a strategy that appears to have worked. (Her MP came out earlier to talk to disabled protestors before the vote to confirm he would be voting against.)

“I’m delighted,” she says. “Without wanting to sound pathetic, I always feel I’m on the losing side, so it’s nice to get this victory.

“I find it depressing that people think assisted suicide is a solution and I don’t understand why people are so preoccupied with the hour of their death.

“I think this Bill would have actually given people – at the end of their life – more problems than it solved. Because actually, in this state the Bill was in, it wouldn’t really have pleased anyone, and you can rest assured it would have come back for developments.

not dead yet 4“People suffering from dementia, for example, wouldn’t have been helped by this bill and yet helping dementia was one of the reasons people gave for supporting it, because it’s a commonly held view that dementia is worse than death.

“And I don’t agree with that, there are still positive moments for people who have dementia, and I’m speaking as someone whose mother is in a dementia home. Although I know it’s not the same for everybody.”

I ask Vasey if she thinks this is the end for the idea of assisted dying.

“I think we’ll see it back. I think there’s a huge appetite for it at the moment. On the other hand, in five years’ time things may have changed. I think there is a feeling in times of austerity, that we don’t want ‘the expensive people’.

“People don’t ever seem to accept that human beings are what they are. There are old people, there are disabled people. Humanity, with all its issues, exists.”

1. http://www.telegraph.co.uk/news/uknews/law-and-order/7865305/Legal-assisted-suicide-creates-slippery-slope-to-doctors-killing-without-consent-expert-claims.html

2. http://www.dailymail.co.uk/news/article-1285423/Half-Belgiums-euthanasia-nurses-admit-killing-consent.html

For another view on the issues around assisted dying, read Jenni Murray’s piece on the Brittany Maynard case: http://standardissuemagazine.com/in-the-news/jenni-murray-right-die-campaigner-brittany-maynards-suicide-important/


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Written by Hannah Dunleavy

Hannah Dunleavy is the deputy editor of Standard Issue. She likes whisky and not having to run anywhere.