Bills which could lead to the legalisation of assisted dying have been introduced in Holyrood and Westminster. With religious objections dominating the headlines, along with concerns about the potential for future legislation to extend beyond people with terminal illnesses, the debate seems fairly simple to most people, whichever side they find themselves on. Talk to those closest to the issue, however, and a different set of concerns emerges. Whichever direction we ultimately take, we need to take those into account if we are to ensure that people have appropriate support. The discussion should be led by the people whose lives are on the line.
Why I want access to assisted dying
Full disclosure: I would like to have access to assisted dying myself. This isn’t because I want to die – far from it – but because it’s much easier for me to live and to enjoy my life if I know that I won’t have to face torture in the future. I have a serious illness which meets the definition of terminal incorporated in the Scottish bill. It has, at times in the past, caused me so much pain that I was left either unconscious or screaming. I got through that because I knew it was temporary, but there are circumstances in which it might become permanent, and if that happens, I want to be able to stop it in the only way possible. There are no drugs that can help. All they can do is make me unconscious, which isn’t much of a life.
As my illness has seriously disabled me, I can’t kill myself without getting somebody else to provide the means, and whilst I’m fairly confident that I could trick someone into doing that, what would that do to them? If it comes to it, I would like to be able to say goodbye to my loved ones and minimise the trauma for them.
Despite this, I do have concerns around assisted dying legislation. Some of my friends in the disabled community are terrified by it, and I respect that, and I want them to be heard.
Disabled people deserve life
Wanting to have the option of ending one’s life, just as non-disabled people have, is not the same thing as wanting to die. Most disabled people value their lives a great deal, but we know that, sad to say, society at large does not. The instructions issued to hospitals during the early stages of the Covid-19 pandemic were a frightening reminder of this. Although they were subsequently amended following a public outcry, we have not forgotten that there was a point at which the NHS – the service charged with preserving health – officially decreed that, should we become seriously ill with Covid-19, we should just be left to die.
This experience was more disturbing because, for some of us, it was not the first time it had happened. Several disabled friends of mine have, over the years, found ‘do not resuscitate’ noticed appended to their notes on routine trips to hospital, on the basis that their lives were not considered to be of high enough quality to be worth saving. And that’s just hospitals.
Disabled people deserve quality of life
When one is living with a disability or chronic illness, life is often going to be tougher, in some ways, than the average person’s. That doesn’t mean that it’s necessarily worse on balance. Still, it’s important to note that a lot of what harms disabled people’s quality of life is not innate: it’s social.
We live in a society that increasingly values people based on their productivity. A society in which people are being forced into jobs that they are plainly not well enough to do: jobs that shorten their lives and that exhaust them to the point that they have no energy left for family life or social activities. This has to end. We cannot put people in a position where they are choosing death because life has been made unbearable when it need not be. We cannot put them in a position where, if they cannot work, they feel like a burden on others. If we do that, we are no longer offering assisted dying as a positive option: we are pushing people into it.
In order for assisted dying to be a matter of free choice, we need to value life, under all circumstances, and ensure that certain minimum conditions are possible for everyone before we expect them to take on any additional responsibilities.
Disabled people need to be recognised as part of society
When we see disabled people as a burden, we don’t just fail to respect their humanity and recognise their potential. We fail to recognise them as part of a bigger social picture. Not all disabled people are dependents. Some are breadwinners. Some are raising children or looking after grandchildren. Many play important practical roles within families or communities. Those who are unable to work often provide social or emotional support that helps others to do so. Without them, society would be poorer in myriad ways.
The extent to which disabled people have been talked about, rather than included, in recent debates over assisted dying is itself an argument in favour of caution. The disabled community is by no means united in its views on assisted dying, but it is the best placed group of people to understand the risks and to ensure that we get it right.
A way forward
Making assisted dying available could be a hugely positive thing for people in situations like mine, and for those who are already suffering much more severely, but it needs to happen in the right way. It needs to be about respecting the autonomy of disabled people, and as such, it needs to go along with a fresh approach to the way disabled people are treated in society more widely. This must start with much more comprehensive inclusion of disabled people in policymaking at every level, and it must include an end to the kind of hostile rhetoric we have recently heard from the likes of Keir Starmer, Wes Streeting and Kemi Badenoch.
If we as a society are to give disabled people access to death – as we should – then we must also give them full and meaningful access to life.
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