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15 July 2014

Tanni Grey-Thompson on assisted dying: “People come up to me and say ‘I wouldn’t want to live if I was like you’”

The crossbench peer talks to Frances Ryan about the debate surrounding the UK’s first piece of legislation to address the right-to-die, and her concerns that it will put pressure on vulnerable people to “take the next step”.

By Frances Ryan

“We’ve never spoken in this debate about ‘the cost of someone’s life’ but to me it feels like it’s bubbling under the surface,” Tanni Grey-Thompson tells me, watching her daughter tussle a bag of chocolate in a Nottingham café. “If I thought my life was a burden on my family, I think I’d be encouraged to think about it.”

The Assisted Dying Bill will receive its second reading in the House of Lords this week, with an unprecedented number of peers – 110 so far – set to debate it. It isn’t difficult to see why Grey-Thompson, who has sat as a crossbench peer since 2010, describes it to me as “probably the most emotionally charged issue I’ve seen in the Lords”. If made law, it would see the country’s first piece of legislation to address the right-to-die: terminally ill patients who are of mental competence and “settled intention” with six months or less to live would be able to self-administer a prescribed fatal dose of drugs.

The run up to the debate is seeing predictably strong rhetoric on both sides, with Justin Welby dubbing the Bill “mistaken and dangerous” after former Archbishop of Canterbury Lord Carey offered his support this weekend. The British Medical Journal, in contrast, has joined supporters calling for an end to “prolonged suffering”, writing in an editorial: “People should be able to exercise choice over their lives, which should include how and when they die, when death is imminent.”

It’s a term Grey-Thompson isn’t convinced about. 

“Choice is a word that’s frequently used in this debate but there’s a very fine line between genuine choice and people making the decision that they feel they should to help other people,” she tells me. “I could see why at a really low point in your life, you could think that was the only choice you have. If this law gets through, we’ll never know how many people will have been forced or encouraged to do it. It might be none. But I’d like the data to prove that, and the danger is that it’ll no longer be measured.”

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Grey-Thompson has become a key voice in opposition to the Bill. Last month, she was among a group of peers and campaigners who signed a letter to the Telegraph stating their concern that it would see vulnerable disabled elderly people treated as if their lives are “worth” less than those of everyone else.

“I think it’ll always be difficult to create legislation in this area that’ll protect vulnerable people,” she tells me. “We can say it’s about individual decisions but I’m not sure it’s that easy. That individual’s affected by everyone around them, whether they think they’re a burden, or a hindrance, or they’re not getting the care they want but don’t feel like they can say anything. With the welfare cuts, people are really worried about their care.”

“Someone got in touch with me recently, saying their local authority have told them their care’s too expensive so it’s been suggested to them they might want to move into an old people’s home,” she adds. “They’re early fifties.” 

Lord Falconer’s Bill is clear in that the law would only apply to individuals who are terminally ill but, from the outset, the question over disability’s inclusion – and what introducing a right-to-die would mean for disabled people – has been a key feature of the debate.  

“We have this debate, we say it isn’t about disabled people, but a lot of people with a terminal illness do have some form of impairment,” she says. “I’m not sure the public is always able to differentiate between someone who’s terminally ill and someone who’s disabled.”

“It’s really hard for lots and lots of disabled people at the minute. You look at the news coverage and it’s about ‘scroungers’, people sucking money out the state, how we can’t afford the NHS. . . The next step is ‘we get rid of people who cost too much’. That absolutely isn’t what Faulkner’s Bill is about but it’s interlinked to me, really.”

What we discuss reflects a fear amongst some disabled people that, at a time of severe cuts to disability support, the conversation is being shifted away from how to provide a quality of life. Dubbed ‘Stop it before it starts!’, Disabled People Against Cuts are planning a protest outside the House of Lords during Friday’s debate. Yet at the same time, there are others pushing for clarification over their right to die. Last month, in a high profile case, two disabled campaigners – Paul Lamb and the family of the late “locked-in syndrome” sufferer Tony Nicklinson – lost their battle at the Supreme Court.

“There’ll always be these awful, tragic cases. But if you move the line [with this Bill], you might open it up to a whole other host of people who might be vulnerable,” Grey-Thompson says, carefully. “I do worry about the next step. This won’t be it. In Belgium, if one parent wants it, and the child requests it, it can be done, even if they’re not terminally ill. Supporters in other countries didn’t get what they wanted through first time but have nudged it and nudged it and nudged it.”

Grey-Thompson, now 44, was born with spina bifida and, after a Paralympic career totaling eleven golds, has gone on to be one of the country’s few, visible disabled politicians. I ask her if she thinks this has had an impact on her position.

“I am affected by my own personal experience,” she says. “I’m fairly frequently told ‘It must be horrible being like you’. People come up to me and say ‘I wouldn’t want to live if I was like you’. And I say ‘Actually, my life’s pretty good.’ What do you think of the rest of the disabled population?’”

“It sounds superficial but. . . Coming here today, parking in the Blue badge space, someone glared at me until my daughter got my wheelchair out,” she says, looking to the glass doors leading to the car park. “Even around stuff like that there’s a lot of anger and distrust. At a time when you’re making cuts, I think people turn in on themselves.”

“You know, it’s really complicated. It’s hard,” she says. “I watched my mum and my dad die. With my dad, I wanted him to be pain free, for him not to suffer and there was a point we agreed future help wouldn’t be useful. But I would never have wanted him to take the next step.”

“There’s a lot we need to do to look seriously at palliative care and end of life support to make sure that this is right for people. No one likes talking about death.

The Assisted Dying Bill means we are at least starting to have the conversation.


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