Disabled star says she believes assisted dying Bill could be a mistake

 Listening to my mum read aloud a diary she kept when I was growing up was never going to be a comfortable experience. 

In one entry from November 1984, her concern was not that I would get bad grades or watch too much TV but whether I would take my own life.

‘She gets very down and often says she wants to die rather than carry on, as she can’t see any good in the future for herself,’ she read. 

It was deeply shocking to hear. 

Aged seven, I had been diagnosed with a rare auto-immune condition that had transformed me from an athletic, popular girl to a wheelchair-user who, by the age of 12 – as Mum’s diary entries make viscerally clear – struggled with loneliness and self-doubt.

How I wish I could travel back in time and tell that desperate young girl that, contrary to the way she felt, what lay ahead of her was a life full of experiences: rich, varied and valuable. 

Invidious

I would go to university, travel the world, get married and carve out a successful career as an actress, appearing in everything from BBC’s Silent Witness – playing the forensic scientist Clarissa Mullery – to winning an Olivier for my performance in The Normal Heart, an incendiary drama about the 1980s HIV/Aids epidemic in New York, at the National Theatre. 

The idea that I thought I wanted to die back then was terrible enough but, thankfully, it wasn’t an option at the time. 

Today, however, we live in a society where that possibility is inching closer. 

Yesterday, Labour MP Kim Leadbeater introduced to Parliament an invidious piece of legislation that, if it is voted through, will devalue the lives of some of the most vulnerable people in society. 

Of course, Ms Leadbeater’s Private Members’ Bill is not pitched in such lurid terms. 

Indeed, it is euphemistically titled ‘Terminally Ill Adults (End of Life) Bill’, continuing a trend in which language on the subject now airbrushes the word ‘death’ altogether. 

Incidentally, I prefer ‘assisted suicide’, because if we are going to legalise doctors helping people to die, then we must be transparent about it. The Bill proposes that terminally-ill adults in England and Wales can apply to die at the hands of the NHS ‘subject to safeguards and protections’.

Details on how long a prognosis the patient has to be given to ‘qualify’ (earlier mooted as six to 12 months) have yet to be finalised.

Ms Leadbeater insists that her Bill is not a slippery slope to widening the parameters to include those who are simply old, ill or disabled. 

Perhaps she has not been to Canada, where the terms of a piece of legislation passed in 2016, ‘Medical Assistance in Dying’ (quickly shortened to the more agreeable ‘MAID’), have widened so much that, from 2027, poor mental health could be sufficient grounds to make an individual eligible for euthanasia. 

I have been to Canada – more of which later – in the course of researching a BBC documentary aired this year in which my mum read to me those painful diary entries.

It was my riposte to a creeping consensus, pushed by many in the media and the arts, that assisted suicide is the backbone of a truly compassionate society. 

So skewed has the debate become – aided by celebrities such as Esther Rantzen and Prue Leith – and so shot through with sentimentality that I insisted on the provocative title Better Off Dead?

For every day, I and people like me have faced the ingrained prejudice among the non-disabled that death must be preferable to our supposedly miserable existences. 

People have no problem being explicit about this, either.

‘I don’t know how you live like that, I couldn’t’, or, ‘If I was like you, I’d rather be dead’, are some of the things said to my face.

I am wrestling with the trials of ageing but my condition isn’t deteriorating (so sod the doctor who once gave a 13-year-old me the prognosis that I ‘wouldn’t live to be old’).

But this Bill, and previous attempts to legalise assisted suicide, I believe, challenges my very right to exist at all. Extreme? I don’t think so.

When a non-disabled, otherwise healthy person wants to end their life – whatever the reason – people do everything they can to discourage them and offer support. 

If we find someone about to jump off a bridge, we don’t cheer them on in the name of ‘choice’.

When someone who is ill or disabled says they want to end their life, however, we throw our weight behind them and campaign to change the law. Such cases are what sparked my activism in earnest.

Like that of Daniel James, who was paralysed playing rugby and chose to end his life at a clinic in Switzerland 18 months later in 2008 aged just 23. 

It was a tragedy that he felt a despair so strong he could see no alternative, but in messages posted online I felt the public exhibited a disturbing empathy for his plight. 

What could be worse for an athlete than to end up in a wheelchair? Better off dead, in other words. 

And that is what terrifies me. 

I have been accused of scaremongering, lying, denying people their right to a choice and condoning their suffering. 

‘This has got nothing to do with disability,’ I was recently told on social media. ‘Mind your own business and let people do what they want with their lives.’ 

I wish they were right, but they’re not; because once you give legal rights to one group of people, then others demand the same.

Canada’s MAID legislation was held up as a beacon of compassion in 2016, yet three years later the Quebec Supreme Court ruled it was unconstitutional to deny assisted suicide to those whose death isn’t ‘foreseeable’ but whose suffering is ‘intolerable’.

That means people who are not terminally ill, like me. 

By anyone’s reckoning, this is an alarmingly loose definition, particularly when you consider that, as I write, there are ongoing moves in Canada to extend the definitions yet again to ‘mature minors’– meaning those aged as young as 12. 

Vulnerable

That’s the age I was when I believed I wanted to die. 

If the option was available, I know Mum wouldn’t have allowed it. But for others more vulnerable, the situation could be different. 

‘Choice isn’t a choice when you’ve got no choice’, as one disabled Canadian man told me. 

Faced with homelessness and mounting debt, he ‘qualified’ for assisted dying – a process that he wryly observed was quicker than that to get disability benefit. 

He was given a ‘death date’ but didn’t go through with the procedure because a member of the public was so moved by his plight that the Good Samaritan raised the money to pay his debts.

With this backdrop, how can anyone honestly say that any safeguard can adequately protect us from coercion, abuse, error and discrimination? 

That’s why, when our MPs come to debate this issue, I beg them to confront the consequences an assisted suicide law will have on everyone. 

Do I believe those at the end of their lives should be as free of pain and suffering as possible? Of course. 

Surely that’s what we all want regardless of our views. 

But the mark of a truly humane society is not in the way we assist people to die but how we assist them to live.