Assisted Dying: ‘There Can Be No Human Hierarchy for Whose Life Is Valuable or Not’

In 1972, I was 11 years old, and having a gloomy day in hospital. I was waiting to see my mum by the entrance to the children’s ward. There was always a feeling of hope and dread. Life had battered me so much already.

I had pain and was often frustrated. But worse was the confusion and abuse inflicted by adults, some of whom were in charge of me. The abuse was sly, unexpected – the slow chipping away of confidence and a burgeoning self-belief as I paused on the troubling threshold of adolescence. 

Back then, I was told, at least once a week, that it would have been a blessing for my family – and for me – if I had not been born. Less suffering all round. After all, everything in my life was doomed with suffering.

So I am familiar with the doubting stabs of where do I belong? and why am I alive? Those words are thorns that I have felt pierce my life ever since. 

I feel them again now, as we find ourselves at the precipice of another private members’ bill – the Terminally Ill Adults (End of Life) Bill – due to be debated in Parliament on 29 November, which states that a person requesting assisted dying must be expected to die within six months.

If it wasn’t so threatening it would be farcical.

Legalising assisted suicide (as I term it) is so yesterday. So before disability rights and activism. So much the outdated ‘medical model’ of disability. 

When you dig deeper, those behind the headlines on ‘compassion’ are often the privileged few, determined to set out an argument that represents the height of individualism. An argument that is perhaps not quite what is claimed – in this case that the campaign to change the law is only for the terminally ill.

So much evidence I have seen demonstrates that this is not the case.

When I was critically ill last year, it was suggested that a ‘do not resuscitate’ (DNR) notice should be put in place for me. Since that time, my life has been a yo-yo of new pain and depths of frustration. But do I think I’d be better off dead? Of course not. Through friends, networks of support, and love, I kept hope. And I still do.

I worry that allowing the slightest relaxation on assisted suicide could lead to the likes of Canada’s medical assistance in dying (MAID) programme for those with a “serious illness, disease, or disability”, including those in a “state of decline that cannot be relieved under conditions that you consider acceptable”.

As actress and disability rights activist Liz Carr’s BBC documentary Better Off Dead? demonstrated earlier this year, under programmes such as this, there can be an emphasis on people choosing assisted suicide rather than asking for support through social care – with subtle encouragement leading you to believe that you are a burden. 

This slippery slope is my big concern as such laws can lead to the literal ending of someone’s life, in my view, in a way that is harmful and horrific – because it devalues all human beings (outside of the most narrowly-defined exceptions).

I am so tired. Do I have to say again that I am a specialist in pain and suffering? I do not want to live with an ultimate threat of coercion hanging over me – coercion that many of us already live with on multiple levels.

Like the arguments against capital punishment, how many innocent people are we okay with dying through coercion supposedly for a greater good? Except this is not for a ‘greater good’ – it is for a minority of individuals who, ironically, disabled people have a shared understanding with through what we battle, whether this be the effects of our broken NHS or facing the endless and excruciating barriers to everyday life from under-funded services including hospice care and ongoing pain management.

I will always believe in life! And believe in the right to decent end-of-life care in a manner we choose that does not create a hierarchy of who lives and dies and which life is given value.

As activists like me prepare for another bout of battle, to ensure we have genuine choice and assistance to live (not be coerced to die), I ask again: who will guarantee our safeguarding to protect the most vulnerable among us?

The battleground is tough.  

Considering the other opponents of the Bill, we do not all rest easy together and never have – from the deeply religious to feminist radicals and more. Many disabled activists feel a need to distance themselves from such groups, yet somewhere in division, we clutch the few threads of agreement. Because we must. This is about life and death.

We hear a lot, especially from politicians, about the ill-defined individuals with ‘unbearable suffering’, who are ‘forced to die without dignity’. About ‘the cruelty and suffering inflicted by the blanket ban’ which is ‘cruel and unjust’, with those in favour of the proposed changes ‘on the side of compassion and humanity’. 

But you cannot, I beg you, legislate the permission to die on such abstract, and often contradictory, concepts. 

Who has agency better than us disabled people in this debate – numbers of whom fall within the demographic of the terminally ill? 

Fifteen months ago, doctors suggested that my life was not one to save; that it would be ‘kind’ to not further my own ‘unbearable suffering’. These doctors were genuinely compassionate people – people we should and do trust. These were doctors who, ultimately, through the fierce insistence of my loved ones, saved my life. And yet, here is the shadow place where coercion can, does, and always will, exist.

I also believe this is about the notion of a ‘clean and perfect death’, based on class-ridden structures of sanitised, productive lives. When it comes to disability and illness, there is the urge for the true suffering of human existence to be wiped away and hidden from broader human experience. 

Now in my 60s, I reflect on all those hours waiting in the hospital to see my mum’s face; to see her love in the hope that I was healing. I have to hope, as this fight comes back again.

We will not, when it comes to it, any of us, to quote Dylan Thomas, “go gentle into that good night”. I for one will always “rage, rage against the dying of the light”.

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