ASSISTED dying legislation is a highly emotive and sensitive subject, a truth that transcends the varied opinions on it.
Whether for or against, there are compelling and difficult personal circumstances to consider, whether that be past, present or future. I have held off on writing about this for a while because, honestly, I have felt quite personally conflicted about the message I want to put out.
In principle, I support it. Wherever possible, I believe that we as human beings should have the utmost individual autonomy, particularly over our own bodies and quality of life. And I’ll admit, when the idea of the legislation first arose, I immediately assumed I would support it. I now feel very differently, and quite strongly so.
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I have major concerns about this legislation, particularly as a disabled person, and even more specifically as an autistic person.
Not only with the legislation as it is currently proposed, but about the potential it has to grow arms and legs and become an integrated and normalised part of modern society.
It troubles me for varying reasons, but first and foremost is the danger it presents to disabled people. I am being expected to believe that a community who died disproportionately throughout the Covid pandemic – or a community that had “do not resuscitate” orders stuck on their medical records without their consent during that pandemic – would be legitimately protected from harm if this bill were to pass?
Unfortunately, I remain unconvinced. And evidence gathered from countries around the world where this kind of legislation is already in force confirms my scepticism is not misplaced.
A Kingston University study looked into the prevalence of the use of assisted dying in cases concerning autistic or learning disabled patients in the Netherlands – and the findings were horrifying.
Assisted suicide is legal in the Netherlands providing a set of six criteria is met, one of which is that the patient’s suffering is unbearable with no prospect of improvement. Between 2012 and 2021, 60,000 people in the Netherlands died via this method, but only 900 were digitally recorded and available to the Kingston University research team. 39 of those 900 were either autistic, learning disabled or both.
18 of the 39 were under 50 years of age, and two-thirds of this group had chosen assisted suicide solely or mostly due to characteristics associated with their neurodivergence, with 77% citing loneliness as a key reason behind their decision.
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In a third of these cases, doctors in charge of the individual’s care explicitly stated that their autism or learning disabilities were “not treatable” and that this was a key consideration in their determination that assisted death was the only option.
For me, this raises a very specific concern in relation to the clinical infancy of autism in particular. In terms of social progress, autistic rights are behind most other causes.
Autism is still hugely misunderstood, especially within healthcare and clinical settings. Should assisted dying legislation evolve in Scotland, autistic people in my opinion will be some of the most at risk of coming to harm.
While the legislation currently proposed in Scotland is limited to terminally ill adults, it is not a stretch to assume that over time, and as assisted death becomes more normalised, this legislation has the potential to evolve, as it has done elsewhere.
Even as it currently stands, in a society where ableism is deeply entrenched across its entirety, we cannot guarantee without a shred of doubt that legal red tape or robust safeguards would work in practice. As we have seen in other countries, the legal foundation for applying assisted suicide can be open to interpretation.
Studies have actively shown that non-disabled people assign lower quality to disabled lives than disabled people do – and any disabled person will confirm to you that this is the case. We are often pitied, and even discouraged from labelling ourselves as disabled, because of how negatively disability can be perceived.
Yet non-disabled people will inevitably be in decision-making roles throughout the process of assisted death, and to not consider the presence of that bias, both conscious and unconscious, when having these discussions constitutes neglect – by every definition.
As much as I want to support it, the risk far outweighs the benefit for me at this point in time and I actively fear what this legislation has the potential to do.
It feels so backwards to me to introduce law that presents even the minor possibility of causing harm to disabled people when our autonomy, dignity and agency when we are alive is so obviously not a priority.
It is unbearable neglect to introduce this before addressing the very real structural barriers that disabled people face in our everyday lives.
Assisted suicide is simply not a free choice for as long as disabled people are denied adequate healthcare, social security, affordable personal assistance, assistive technology, equal access to education and employment, and free access to community infrastructure and transport systems.
To dismiss this argument by citing “12 robust safeguards” is to admit that you simply do not fully grasp the disabled experience in modern Britain.
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What it actually means to live as a disabled person, and how disability often interacts in parallel with wider social and economic pressures – and how that could put people under duress when making important life decisions. How the mere existence of legal red tape often does not translate into real protection on the ground.
Disabled people have long been victim to persecution, discrimination and even genocide globally. The value placed on disabled lives has always been lesser, and unconscious bias surrounding disability can be found in virtually every single nook and cranny of our society.
The solution that requires is structured, rigid legislation that forces the hand of entire societal culture shift. It takes time, it takes well-thought out and meaningful policy, it takes funding, it takes collective progress. We are just not there yet.
When politicians can prove to me that they value the agency, autonomy, dignity and quality of life of disabled people when we are alive, I will be more amenable to a discussion on how we might die. Until then, we as a society are just not ready for this, even if we really want to be.
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