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.
Thank you for writing this article. Very good and you are SO right.
Whilst you raise some good points, I don’t feel that all your conclusions are entirely fair.
No, it is not suprising that more poeple that have died are elderly, have other health problems, are disabled or obese (what is surprising is that more people from ethnic minorities have died, the reasons for which are still not entirely clear). This does not mean that people don’t care or ‘that they were expected to die anyway’, it is a result of the virus. It was known fairly early on that whilst these people were not necessarily more likely to contract Covid, they were far more vulnerable to serious illness and death if they were infected – despite the best efforts of health professionals. This was because their immune systems were weaker or had other vulnerabilities which were exacerbated by the virus – their lives were much harder to save, not because people didn’t try, but because there is no magic cure for Covid. Hence the need to try and prevent infection through shielding and social distancing, I know this has been hard for those who have had to stay at home, but I for one, continued to shop in person to allow delivery slots to go to those who needed them more.
Particularly in the early months, there was limited knowledge about how Covid attacked a wide range of the body’s systems and also limited treatment options available, but that does not suggest that hospital staff did not try and save the lives of disabled people. The whole point of trying to prevent the NHS from being overwhelmed was, to not get to that stage where people were being turned away from hospitals or staff having to decide who did or not get treatment.
But yes, the supply of health care in not an infinite resource, and as you have pointed out previously, decisions are made, sometimes seemly arbitrarily, about what treatments, conditions, research etc get funded. Sadly, it goes back to numbers, money and taxes, the economy, public persception, charitable giving etc. I don’t know what the answer is. One of the reasons we have got a vaccine so quickly, is that money and resources were thrown at it plus a guarenteed market. And yes, many less urgent treatments have been delayed with potential consequences in the future. I suppose you could argue that the ‘dying now’ have been prioritised over the ‘not yet dying’.
I agree the use of DNR orders was shocking, as was the lack of thinking and protection given to care home residents, this dispite the horror stories coming out of homes in Spain and France. This is definitely something that needs to be investigated.
The vaccine in the UK is being administered at a tremendous pace and those with health issues are amongst those being prioritised, maybe not as soon as they would like, but they are being prioritised and age is the single biggest factor in determining likelihood of death from Covid. It is important that care workers are also vaccinated as that helps to protect those they care for. A friend’s mother who died of Covid was most likely infected by a carer and as the family was not told that the carer had tested positive, treatment was not sort as soon as it might have been for their mother.
Yes, arguments rage as to how much the economy should be opened up and how quickly, but not so healthy people can go out and have a good time! I’m not an economist but there are also factors of unemployment looming and increased poverty, which also take their toll on health. And whilst a hairdresser or pub managers job may seem less impoortant than a teacher or a doctor or a food producer, it is still their source of income for themselves and their families. If people are earning less and businesses staying closed, there are less taxes being raised and so less money for medical teatment etc.
Sadly, a situation of Covid zero is unlikely to be reached any time soon. Whilst some countries may offer a vaccine to their entire adult population during 2021, many poorer countries are not expected to achieve this until 2023 or 2024 (causing much hardship and amongst other things, a huge loss of education, many older girls in these countries will not return to complete their education). In the meantime, more varients may arise making control harder.
This is in danger of being as long as your blog, but it is a massive topic, I just wanted to put a slightly different point of view.
Hi Ruth,
Sorry for the slow reply I’ve been having quite a sick week!
I think you are right that people did not want disabled people to die – and I 100% agree that it the vast majority of cases medical staff will have done their utmost to keep as many people as well as possible. I think the issue is that medical staff do not really have much control over what the rest of the country is doing – if they did I am sure things would have gone very differently.
Sadly it is unsurprising that people with weaker immune systems (so the elderly and people with certain disabilities) are more at risk from the virus, just like they are with every illness, so of course it is more likely they would die. The issue is that we are not talking a few deaths we are talking tens of thousands. We knew that these people are more vulnerable but still government policy has not been to protect these people in the way that they should have been protected – many have been forced back into dangerous working circumstances, not given the access to online shopping, or support in a lot of ways. And that is because saving lives was not the top priority of the government. If it was we could be in the same situation as many countries right now: Australia, New Zealand, Taiwan, Japan – all of which have had fairly minimal deaths, because their goal was covid-zero. Obviously hindsight makes things a lot easier, and we can’t change what has happened, but the fact is that there were a huge number of epidemiologists begging for the UK and the Netherlands to take corona seriously and focus on saving lives, but they did not.
There are so many examples of government interventions that were done in ways which treated the spread of corona as unimportant. For instance the eat out to help out government scheme. It could have been great because it was helping small business owners who have obviously suffered a lot during the pandemic. But there was no need for this only to be for people eating out and not ordering takeaways. This was to coax people back out and had the very obvious side effect of spreading corona – but this was seen as less important that getting people back outside and making the virus seem less scary. They could have helped small business out in the same way by covering food delivery, whilst aiming to contain the virus.
I think the issue is that underlying the decisions made by the government is the idea that the economy is more important than people’s health – because they have high stakes in the economy. And that means that disabled people are collateral damage for their decisions. And the ethos that the government and the media create is the ethos that the majority of people will follow. And in this case it was not to care about those who are most vulnerable.
In regards to vaccinations I will admit that the UK is doing a lot better than a lot of other places. I am personally slightly bitter on this one because despite doctors agreeing that I am higher at risk from corona I am still mid fight to be included in the prioritizations. But comparing the UK and the Netherlands in this regard and the UK is doing an amazing job. In the Netherlands vulnerable people under the age of 65 don’t expect to be vaccinated until at least the end of May, meanwhile a lot of hospital management, who work from home at the moment, have been fully vaccinated. But even in the UK many people have been left off the list, including a few people I’ve talked to whose family act as their carers and have been vaccinated, but who themselves have not – a bit of a bonkers sitaution.
Anyway, this is getting very long so I’ll end here. This is such a multifaceted issue, and everyone has been effected by the corona virus. I think we will be analyzing responses for years to come because there are so many different groups effected in completely different and contradictory ways. However I do feel like some aspects, such as the effect on disabled people, has not been acknowledged or discussed enough. And I personally wish I lived in New Zealand right now… but don’t we all?!