I’ve been putting off writing this blog post for the best part of a year now, because I want to do it right. But two pieces of news that came out of the UK last week made me finally stop procrastinating and write. So, today I am going to tackle something that I have only seen discussed by people within the disability community, and sadly, not really anywhere else, and that is the increasingly visible culture of eugenics which seems to be driving many of the perspectives and decisions taken about the corona virus.
The numbers
Last week, the UK Office for National Statistics released the data for corona deaths, and it showed that 6 out of every 10 people that died from the virus were disabled. That means that 60% of people who died from corona were disabled. The Office for National Statistics also recognise that this is likely to be an underestimate. The general population of the UK comprises only 17.2% disabled people – so this makes the figure of 60% completely disproportionate. As a disabled person, this also makes it very scary.
To show what this means in terms of the risk faced by disabled people, disabled women are 2 to 3.5 times more likely to die of the virus than non-disabled women; and disabled men are 1.9 to 3.1 times more likely to die. People with learning disabilities are 3.7 times more likely to die. This is a very significant number.
And whilst some people might be surprised by this number, a very similar statistic was released last year, again showing how disproportionately disabled people were dying from corona virus. Yet these statistics do not even touch on the numbers of people whose conditions have significantly worsened after having corona, nor those who have died due to ‘non-emergency procedures’ being rescheduled.
What shocks and saddens me most about this, is how little outrage or even conversation there was when this figure was released; it seems that only disabled people were concerned about the huge inequality in the death rate. Either it was deemed unimportant or irrelevant, and yet a lot of these deaths were completely preventable, had disabled lives had been considered worth saving. You need only look at countries like New Zealand, Singapore, Taiwan and Japan to see how things might have been different.
A culture of eugenics
It seems to me that, over this year, disabled deaths have been made out to seem almost natural, as if the disabled are the natural victims of a pandemic. And because of that, disabled deaths are not considered preventable, or if they are, they are not deemed worthy of saving.
Let’s go right back to the beginning of the pandemic. The commonly uttered reassurance to those worrying about corona was, ‘Don’t worry, it only really affects the elderly and the disabled, so we will be fine’ – which may be comforting if you are healthy, but for someone who is disabled, this wasn’t exactly the reassurance I was looking for. On top of that, it implies that the only people likely to die from corona are those who were already going to die, and so there is no need to be concerned about covid deaths at all.
But, being disabled and elderly, whilst it does put you at higher risk of contracting covid, does not mean your life is over. Many disabilities do not significantly – or at all – reduce your life expectancy (except perhaps as a result of lack of support – which is another whole article). Therefore, suggesting that most of the people who will, or have died from coronavirus would have died soon enough anyway, is false, and also deeply offensive. Accepting that it is okay, or even good, as a few have claimed, is accepting eugenics, and the idea that disabled lives are worth less.
Herd immunity
The comforting phrases mentioned above really fed well into the justification of herd immunity, the strategy adopted by many governments, at first explicitly, and then subsequently under different names and guises.
Herd immunity, as a strategy, is the idea that, if enough people get infected by coronavirus, societies can build up immunity to the virus. Ignoring the fact that, very early on, there was evidence people could be infected twice and this strategy wouldn’t work, let’s look at what it implies.
To achieve herd immunity, it was suggested that something like 60% of the population would need to be infected by the corona virus. Therefore, for this strategy to work, many people would have to get sick, and inevitably some would have to die. The weaker and more vulnerable would obviously be those who died but it would be ‘for the greater good’: group immunity to the virus. So to follow this strategy, its proponents had to accept that there would be deaths, and these would mostly be from the most vulnerable groups. In other words, a conscious decision was made not to protect people from the virus – a decision which has needlessly killed so many disabled people. They are the collateral damage.
No Covid zero policy
Since then, most countries have claimed that they no longer follow a policy of herd immunity. However, both the Netherlands and the UK (the two countries whose policies I know the most about) have adopted policies aimed at keeping hospitals from becoming overwhelmed, not at minimising deaths. This is not aiming for covid-zero. So once more, this kind of strategy is not aimed at saving lives, it is aimed at preventing the infrastructure from being overwhelmed and supporting the economy.
A policy that does not aim for covid-zero, is then a conscious choice not to protect lives, and more specifically, not to protect the vulnerable lives of those most at risk of dying – in other words, disabled lives. What this boils down to is that disabled lives are deemed less valuable than non-disabled lives, and their deaths are an acceptable price to pay for keeping the economy running.
For many during lockdown, the rallying cry has been to keep the vulnerable locked away, thereby allowing the non-disabled to get back to their lives, keep the economy going, and live normally. And repeatedly this has happened: shops have re-opened, gyms, cinemas, schools… and lock down has ended, just before the numbers get low enough to have an impact or the possibility of reaching covid-zero. So the disabled have to remain inside, shielding, and even when we do, we still die in huge numbers, because it is impossible for disabled people to fully remove themselves from society. We are sacrificed for normality and for the economy.
Every time a lockdown is ended, and decisions are taken not to try and reach covid-zero, we are reaffirming that disabled lives are simply the collateral damage from the pandemic. Disabled lives are less important. As Lord Sumption so graciously put it when questioned by a woman with breast cancer, ‘I didn’t say your life was not valuable; I said it was less valuable’. And whilst he may say it more openly than others, the reality is that we are living in a world where this thinking is acceptable and forms the basis of many corona virus decisions, on an individual and a governmental level. Opening up the economy, returning to normality, going to McDonald’s, going on holiday, having a beer in the pub, is all deemed, by the majority of people, to be more important than stopping the spread of corona and, thus, more important than saving disabled lives.
And this sacrificing the ‘weak’ and the ‘vulnerable’, and letting nature take its course so the rest of the world can carry on, is all part of a eugenics discourse that has killed disabled people throughout history. The mere fact that very few non-disabled people are talking about it simply reinforces how accepted, even if implicitly, it really is.
Active eugenic policies
Now that we have discussed the underlying eugenicist ideas informing our approach to the coronavirus, let’s talk about some very specific and active instances and policies that are needlessly killing disabled people, and there are many in both the Netherlands and the UK.
Do Not Resuscitate (DNR) orders
Throughout the pandemic, a large number of disabled people have been forced to sign DNRs, and most recently, it has come out that a lot of people with learning disabilities have been given DNRs, not on the basis of being too frail to benefit from resuscitation (as would be the normal reason), but on the basis of their disability alone.
Mencap, a UK charity has been campaigning against this, throughout the pandemic, but it still seems to be happening (although less regularly now), and some people have had DNRs put on their medical records in the past, not realised, and therefore not been able to change it. As yet, the numbers of people affected by this are unknown, but there is a report soon to be published, which will hopefully establish more clearly what has been happening.
This is maybe the clearest example of eugenics: a group of people have had their lives labelled as less valuable, meaning they have literally been told they will not be saved should they be hospitalised with the virus, because resources are better saved for more ‘useful’ people.
Vaccine priority
I realise this post is getting long, so I will keep the rest of it short. But vaccine priority is another area where eugenics is at play. Despite the knowledge that disabled people are most at risk from the pandemic, many disabled people, including myself, are not being given priority with vaccinations. Whilst some have been included as a priority, and in the UK have at least been vaccinated (in the Netherlands not), there is a huge list of disabilities not considered to be a priority, including a lot of learning disabilities.
It seems that, whilst we are locking up disabled people so that normal life can continue, then the elderly and disabled are the only people vulnerable to corona, but when it gets to distributing vaccines, suddenly a lot more people are vulnerable!
Once more we can see that – despite the appearance, in the UK at least, that all the elderly and vulnerable people are being vaccinated first, and indeed, many thousands have been – the choice has not been taken to actively save disabled lives, but rather to focus on speeding up a return to normality for non-disabled people – and to limit hospital numbers. So whilst, for instance, all carers are eligible for their vaccines, not all the people for whom they are caring (who are far more at risk, should they go out), are eligible – which is frankly bizarre.
All of this to say that, in a pandemic which has taken such a huge toll on the disabled, not prioritising those most at risk for the vaccine, is a huge sign that disabled lives do not matter and are not worth protecting.
What now?
Why am I writing this? Of course, the pandemic has been difficult for almost everybody, but as part of the disabled community, it has been very difficult hearing things like, ‘we are all in this together’, when, at every turn, disabled lives have been recklessly sacrificed – by our governments, our acquaintances, and even some of those we considered our friends. And the death toll just illustrates our experiences. We have been shown, very clearly, that our lives are worth less – and yet other people just don’t seem to see this.
I am writing this to explain to those who have not considered these issues in depth, and because I have seen very little written around the topic, except by other disabled content creators (whose pitches to get this narrative into mainstream media have been repeatedly turned down). I am writing this because it needs to be said and it needs to be recognised for what it is.
