How Scotland’s disabled folk changed my view on assisted dying

I genuinely became a journalist in my naive youth to stick up for the little guy, to defend the underdog – all that bright-eyed and bushy-tailed, utopian, give-a-voice-to-the-voiceless stuff that the world tries to beat out of you as you get older.

I’ve done my very best not to let the cruelties of modern life coarsen that idealism or purge those beliefs. I’d still rather gargle hot coals than defend those in power, and if there’s someone with their back against the wall I’m naturally drawn to their side.

But I feel I’ve failed somewhat when it comes to disabled people. I’ve not written much about their lives. Indeed, I knew little about their lives.

Read more 

• Neil talks to Liam McArthur the MSP behind the planned assisted dying laws
• Neil talks to Scotland’s disabled community about their brutalised lives
• Neil on how politics has become an arena of sadism, and cruelty is the point

Among my friends and family, there are no disabled folk. For that, I count my blessings, but I’m also acutely aware it left a hole in my understanding.

I’ve now tried to rectify that by spending time with disabled people, listening to their concerns. The Herald published the account on Sunday in a long read headed "Abused and terrified: inside Scotland’s brutalised disabled community".

I was pleased to see it affected many readers, though horrified at how pitiless some members of the public were, deeming the disabled a drain on resources.

It’s this brutal economic view of disability which wrought the most change in me.

I’ve supported right to die laws for decades. I view the passing of such legislation as the last great human rights battle, giving citizens autonomy over their bodies and freeing us from needless and unendurable pain in our final days.

Evidently, I‘ve read reports of disabled people saying assisted dying legislation would lead to some dystopian horror movie where they’re encouraged by blind bureaucracy to take their lives, but it seemed outlandish and wild exaggeration.

Then I spent time with folk like Tressa Burke who heads up Glasgow Disability Alliance. Tressa has MS and represents 6000 disabled people. She and her members genuinely dread the passing of assisted dying laws. They’re not exaggerating their fears.

Their position is straightforward: disabled people have been so mistreated by society that they’re unable to trust the rest of us not to hurt them. En masse, they feel abandoned by our governments, starved of care and support; they’ve been reduced to poverty by the meanness of state services; abuse is commonplace; they’re regularly told they should be exterminated by the hellish creatures who inhabit Twitter; they’re physically attacked; and the NHS gaslights them when they raise concerns about their treatment.

Burke is terrified of the rise of the far-right and the possible resurgence of eugenicist ideology. She once supported assisted dying legislation but as austerity savaged disabled people’s lives she became an opponent. As long as the lives of disabled people are devalued, assisted dying laws cannot pass - that’s the position of Burke and many others.

Disabled campaigners say that if we bring the lives of disabled people up to the same standards as the lives of non-disabled people, if we afford them the same respect and rights as the rest of us, it’s then and only then that society can start talking about assisted dying.

Just yesterday on these pages, the Canadian writer, Roger Foley, who’s disabled, spoke of his fears over “coercion into dying”. Canada already has assisted dying laws.

What I’ve learned over recent weeks has horrified me. Nobody should feel such fear. My experiences have altered my views.

I haven’t abandoned my support for right to die laws. I still believe legislation must pass. However, my experiences have considerably softened my rhetoric, and forged a more considered and empathetic approach, I hope.

Any assisted dying law must be drafted with disabled people front and centre. I couldn’t bear for legislation to be passed, which I support, while those same laws terrify good and decent people. That would simply be wrong.

Every conceivable effort must be made to quell their fears. The proposal, which emerged last week, to remove judges from oversight of right to die applications in England only increases fears.

There is no any plan for some dreadful move to compel the disabled to take their lives. However, I do understand why disabled people feel as they do, and fear as they do. The social failures we’ve permitted leave them no alternative.

The disabled community must feel fully involved in the legislative process, and they don’t at the moment.

I’ve no care towards other opposition to assisted dying. Religious opposition leaves me entirely cold. Religion is merely an ideology, like any political position, and I’ve no interest in ideological concerns around these laws, particularly ideology based on myth. I care only about the lived experience of fellow human beings who I value and respect.

Lib Dem MSP Liam McArthur at a media event promoting his Assisted Dying Bill (Image: PA) I suggest that our MSPs open parliament to a special session involving just the disabled community, so they can speak fully of their concerns around assisted dying.

I would then hope that representatives like Liam McArthur, who proposed the bill, would then work tirelessly and empathetically to reassure them on every count, and where possible include additional safeguards which the disabled community may require.

I dearly want this law to pass in Scotland, but I don’t want my wishes to ride roughshod over the lives of the disabled or to increase their unhappiness.

I consider myself a relatively empathetic person. But I didn’t know much about disabled folk. I do now, and that understanding has, I hope, made me a slightly better man.

I recommend similar ventures in empathy to others. For instance, our society seems bloated with those who detest the trans community, yet have never met a trans person in their lives.

I suggest that before anyone damns a community, or decides how they feel about a community, that they first get to know some people in that community. Otherwise opinion is shorn of fellow-feeling and wisdom.

Neil Mackay is the Herald’s Writer at Large. He’s a multi-award-winning investigative journalist, author of both fiction and non-fiction, and a filmmaker and broadcaster. He specialises in intelligence, security, crime, social affairs, cultural commentary, and foreign and domestic politics.