As someone who lives with a learning disability, the do not resuscitate (DNR) notice gives a clear and unambiguous message: the government wants people like me dead.
I feel sick to my stomach writing this. But what hurts the most about this situation isn’t even the DNR notice itself. Given that people with learning disabilities are often considered to be at best, a burden; and at worse, a drain on society – the implementation of a notice like this was less of a matter of ‘if’ and more of a matter of ‘when’.
For me, the worst part of this issue is the fact that nobody is talking about it. All we had was one night of outrage, solidarity, and shock until the able-bodied and neurotypicals’ nerves were soothed with chocolate hearts and flowers for Valentine’s Day.
“You’d think that the state-sanctioned murder of up to 1.5 million people in the UK would be splashed on the front of all the newspapers.”
While I have no doubt that the non-disabled were genuinely upset for us, there is naturally a limit to how much they care. And this is simply because the stakes aren’t as high for them. They have the luxury to not think about it, to say “wow, that’s bad” and then move on because they know that they’re safe. Often, it’s not their lives that are on the line.
But if you think about it, it isn’t really their fault. You’d think that the state-sanctioned murder of up to 1.5 million people in the UK would be splashed on the front of all the newspapers. When I first heard the news, I envisioned the crisis being laid out in bold emergency letters on all the broadsheets. Breaking news updates giving us a minute-by-minute account of how we’re going to fix this human rights crisis. But nothing. Absolutely nothing.
Instead, the mainstream media were consumed with the idea that lockdown, in some sense, could be lifted on 8th March. When I woke up that next morning and saw the lack of media outrage, my heart dropped. I was left with the words of Tory MP Charles Walker ringing in my ears: “we cannot cancel life to preserve every life.” It was then that I realised that, once again, the suffering that people with learning disabilities face was nothing more than a footnote in society. For everyone else, life goes on. At least, it goes on for those who are deemed worthy of living.
“It was then that I realised that, once again, the suffering that people with learning disabilities face was nothing more than a footnote in society.”
Whilst researching for this article, I realised that these “inappropriate” and “unlawful” DNR notices were first whistle blown over six months ago, in June. At that point, national charities revealed that they overturned over a dozen DNR notices implemented without the patient’s consent. Learning Disability England said almost one-fifth of its members had reported DNRs placed in people’s medical records without consultation during the first lockdown, in March and April.
You might think that raising awareness of the practice would make it stop, but no. It’s gotten worse. In the last five weeks, 65% of all COVID-related deaths have been attributed to those with learning disabilities, while the Care Quality Commission revealed in December that inappropriate DNR orders had caused avoidable deaths last year. Can anyone see a pattern here?
Illegal DNR notices clearly aren’t a new problem, but there’s no cover-up going on. To this day, the government are operating a eugenics campaign in broad daylight, despite the evidence literally being printed in black and white. And they’ll continue to get away with it too, because the lives of those with learning disabilities aren’t deemed worthy enough to fight for.
“As someone with a learning disability, these DNR notices have eroded me down into something less than human.”
As someone with a learning disability, these DNR notices have eroded me down into something less than human. I’m being told that whether I live or die is a choice that I don’t deserve to have. All my life, I’ve been conditioned to think that doctors and nurses will be there to catch me when I fall, but that’s not true. I’ve been lied to.
I’ve been left completely alone outside the definition of ‘human’ to confront the reality that those who took an oath to save my life could be the very people who end it. The most humiliating part is that I’m not even worth the effort of actively killing. Instead, I face dying how I lived – completely and utterly neglected by the very people who were meant to look out for me.
But it doesn’t have to be that way. Me, my friends, my little brother, and every single face behind the 1.5 million people with learning disabilities might have a chance; if you fight for us, raise awareness, and refuse to let this issue go away, you might just save our lives.
Charlotte is a freelance journalist who has previously written for publications such as The Breakdown, The Independent, and iNews. @colombochar
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