‘Assisted Suicide: Always Personal and Always Political’

Medically-assisted suicide is about as personal as you can get. A matter of life and death. And let me tell you: this is my reality.

The Government’s latest pronouncements on personal independence payments (PIPs), and the typically cruel and baffling responses to the rise in the number of people experiencing mental health issues, have once again showed me how much it despises disabled people. Apparently, we just need to buck up. 

Inexorably and savagely, these politicians scapegoat and blame us for their fiscal failures, as they have done time and time again. 

They demonstrate no appreciation of the suffering created by the pandemic and its consequences for so many. There is hardly a murmur as to why anxiety, ill health and depression are all on the rise. Could 14 years of this Government have anything to do with it?

My 2013 poem, Scrounger, sums up my feelings:

I am not so much as shocked as wearily disbelieving that the Government’s rhetoric towards disabled people simply does not change. In fact, it’s getting worse.

This is an important backdrop for the assisted suicide debate currently gaining steam again – and is part of why I will always be opposed to any changes to make it easier.

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‘Compassion’ and Concerns

A new BBC documentary, Better Off Dead?, fronted by actress and disability rights activist Liz Carr, airs on 14 May. Like Liz and many others, I’ve often been trolled on social media when posting about this topic, screamed at outside the House of Lords, and I expect more as a result of the documentary, in which I am honoured to appear. 

I’m used to being called a ‘monster without compassion’ – who cannot understand pain because of my views on this subject – by pleasant-looking, well-fed, non-disabled folk making assumptions about my life. But they do not stop and ask why I am asking questions about assisted suicide.

How far should we go with it? Is it time to let ‘others’ make decisions for the dying, the aged and the weak? Who are these ‘others’ – our leaders? Those who can scarcely run a country with any shred of competence or compassion? Or do we want a state-sanctioned utilitarian system of death for anyone – death tick-boxes for terminally-ill children alongside mentally-ill veterans? 

The issue of assisted suicide, and whether the law should be changed to allow for medically-assisted death in the UK, comes around in my life like a Dickensian haunting. It’s not so much the ghosts of Christmas past; it’s the ghouls of politicians present – looking to resist in the first place any true and genuine right to give disabled people support; for them to thrive, beyond basic survival and struggle.

Cross-party ghouls have reappeared in recent weeks, lurking behind journalist and presenter Esther Rantzen, who is terminally ill with lung cancer. Rantzen has signed up with Dignitas, the assisted dying clinic in Switzerland, because she feels it may be “the only other way of having a pain-free death”.

The BBC article on her decision stated that a parliamentary debate “was triggered after over 200,000 people signed a petition calling for dying people to be able to ask for medical assistance to end their lives”. On the website of the pro-assisted suicide organisation, Dignity in Dying, it is claimed that 75% of people who took part in a 10,000-strong survey support the law being changed.

The same BBC article referred to Amy Proffitt, former president of the Association for Palliative Medicine, who was quoted as saying that people on both sides of the debate come from “a position of compassion” and that “we all want to relieve suffering”. However, she echoed my own concerns while expressing her’s – saying that, as a doctor, she was not trained in the law and could not “determine coercion”, adding that “if we are going to legalise the system, it can’t be in the NHS. It is deeply dangerous in healthcare and could be seen as cost-saving for the Government”.

Cost-saving for the Government. 

There we have it. This is what activists have known for a long time.

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Removing the Slope

One of the countries that arguably actively encourages assisted dying is Canada, with its medical assistance in dying (MAID) programme available for all your ills and struggles – right up to when social care support fails and your worth is downgraded. “You do not need to have a fatal or terminal condition to be eligible for medical assistance in dying” it states.

With fellow activists, I once yelled that the slope was a slippery one, while we were attacked as cruel fearmongers. In Canada, no slope now exists. 

Human rights activists have raised concerns about the Canadian system, with one 2022 article published in The Independent illustrating the point. It detailed how a 25-year-old woman with cerebral palsy and spina bifida was taken by her mother to an emergency room in Newfoundland where “a doctor said she was a candidate for euthanasia and that if her mother chose not to pursue it, that would be ‘selfish’”. 

In the US state of Oregon, the grounds for assisted suicide include establishing loneliness as a category. In the Netherlands, alcoholism, anxiety and depression make consideration of it worthy.

My concern is that there are ways of thinking about disabled people that pervade our society, underpinned by the Government’s continuous attacks on our benefits. And so, for me, assisted suicide is a way in for a dangerous, niggling idea of how we should value disabled people’s lives. The suggestion of death as a ‘compassionate release’; the tidy way to end ‘suffering’ puts us in danger.

‘Choice and control’ is the mantra by which I live as a disabled person so, of course, I am an opponent of any softening of the law on assisted dying. It would give someone in my position less protection. I know about coercion. I know how the medical system works. 

I also know we already have opportunities to ease the pain (a considerable feature of my life already) that may surround our death through the (despicably underfunded) hospice movement. I’ve signed up to those systems already in existence to ensure my end-of-life choices are safeguarded.

At the time of my brain traumas last August, a DNR (Do Not Resuscitate) notice dropped lightly into my life – as I faltered in ICU – issued by medical professionals who did not know me or my loved ones. Loved ones who were warned on two occasions, while I was in a coma, that I may not make it. I have those who wrapped their care and love around me at that time of crisis – of life and near death – to thank for my survival. The DNR was quickly removed.

But it had appeared because a judgement was made about me – that I would not want to live, because of how I am perceived as a disabled person with multiple and painful medical conditions. How easy it is to push those judgements on individuals made vulnerable by circumstances they cannot control, by governing ghouls enjoying societal pressure, and polls pushing for the law to change.

My loved ones knew my choice would always be to fight. To be given an equality – and keep a safety net – that others take for granted. It is no exaggeration to say that because of this I am here now. Writing this column. Against medically assisted suicide.

Penny Pepper is an award-winning author, poet and disabled activist