Is there anything progressive about a policy that forces disabled people to question their worth?

There’s not many of us who choose to talk about how we would want to die and yet we have probably all talked endlessly about under what conditions we would not want to live: if I could no longer feed, wash or go to the toilet myself; if I had no legs; if I was in intolerable pain; if I lost my sight; if I lost my mind; if I had a degenerative disease…and so the ‘if I…’ list goes on. 

What it must feel like to be a person disabled by any one of those things and hear a checklist of conditions that for others would make death more tolerable than life.  

I thought about all of that last week as Pam Duncan-Glancy spoke so eloquently, not for herself, and God knows, her personal circumstances could fuel a whole argument about the sheer will required to live against the odds, but for a community of disabled people already scarred by a pandemic that saw them in the ‘do not resuscitate’ firing line. A group already fearful of what cuts to welfare might mean for them. Men and women who already experience the brunt of all the worst elements of prejudice, discrimination and hate.

And individuals who are forced to give up some agency over their own lives almost every day. As Pam said, she is often praised for living a life that other people will tell her they could not. And while no doubt well-intentioned, how should she measure her own self-worth when you tell her that you would find it a life not worth living?

The Scottish Parliament’s debate on Liam McArthur’s much heralded Assisted Dying for Terminally Ill Adults (Scotland) Bill was compulsive viewing. Rarely is there an issue so emotive, so rooted in the philosophical meaning of life, than a debate about the right to die. 

But then we are all invested in death. And there was so much to commend our parliamentarians for during the debate, for reliving pain, for putting party politics to one side, for recognising the gravity of the moment, for respecting everyone’s right to a view, and it would be churlish to say otherwise. But I admit to a certain unease in the opinion that our parliament works best when our representatives expose something of their inner selves. Tears win plaudits. And that much-coveted expression of ‘lived experience’ always ends in applause. But when our parliament resembles more of a support group than a legislator, I can’t help but wish for more. 

Of course, there is an inevitability that the arguments around the principle of the right to die become reduced to the personal. How rules would apply to your own circumstance is the mental exercise we all must go through. What dying relatives or friends have expressed through their own torment and terror as death encroaches will inform.

And here I confess a vested interest because the MSP George Adam and his wife, Stacey, are interwoven with my Holyrood journey. I knew when George spoke in the debate that tears would fall because this is personal. Stacey has battled with multiple sclerosis for decades, since she was 16, and now has many health issues. This debate is real for her. And while her MS, asthma and osteoporosis are not considered terminal, George told the chamber that they had been forced to think about how any one of  them could lead to a serious terminal event in later life. Speaking as Stacey sat in the public gallery, he added: “The truth is I don’t know if I would be strong enough to let go. The thought of life without her is unbearable. I know that’s selfish but I’m a human being.

“As the song goes, ‘she’s every thought, she’s everything, she’s every song I ever sing’. I don’t want to make that decision; I want Stacey to be able to decide and that’s what this bill is about.”

And I agree with every word that George had to say, and I know his decision to vote for the bill is heartfelt and rooted in his love and his life with Stacey. But it’s removing yourself from the argument and transcending personal turmoil that has to be the role of the legislator. By all means be shaped by your own emotions, use you own moral compass to give direction, but it is thinking not about George without Stacey, the man without the song, it is considering a ‘Stacey’ without a ‘George’. A Stacey that doesn’t have the constant love and support that this one does. The lonely Stacey struggling emotionally, financially and with fear, trepidation and anger at what is to come. The unknown, everyman Stacey who by circumstance feels that hastening their own death is the easier option.

And so, in my view, George has not to vote for the choice for his Stacey but for the Staceys of this world without a George. And further, ask what we can do as a society to fill the gaps that might make anyone feel – coerced or otherwise – that ending their life is their only option.

And there is another danger. That the right to die is viewed through the lens of being progressive – another piece of groundbreaking legislation that somehow fits into that ever-expanding list that sits below a headline of ‘the right to full bodily autonomy’ – and that politicians fall in line for fear of being on the ‘wrong side of history’ if they do not.

This requires cool heads and sharp thinking. But is there anything progressive about a policy that puts a value on life, that forces disabled people to question their worth, pushes poor people to think about the financial burden of cancer, allows mentally ill people to believe that death would be an easier escape to happiness than their current living hell, that tells old people that they are no longer wanted? I’m just not sure. 

I went into this debate ambivalent with a vague sense that come the time, I would want the right to choose my own death. I listened still not convinced one way or the other, but what Pam Duncan-Glancy did was remove herself from being the focus of her own argument. She didn’t ask for MSPs to vote based on her story but on the lives of others. That is the true role of a public servant.

And it made me stop and think. You can want the right to choose death for yourself, that’s easy, but parliamentarians have to decide on behalf of a nation. And right now, when trust in politics is at an all-time low and when vulnerable people, most notably the disabled, are already feeling the financial pressure, and with the focus on cutting the public purse, is this the right time? I’m not yet convinced.