In the Netherlands, there seems to be this idea that self-isolating and following precautions and corona regulations is an individual choice. This isn’t such a surprise, when you look at the Netherlands and see how hyper-individualised everything is, but when it comes to responding to a pandemic, it is not such a successful perspective. And you can see that by the statistics: the number of corona deaths per capita is higher in the Netherlands than in the US (when I last checked, a few weeks ago). A pandemic, and infectious diseases in general, are by their very nature a communal thing, so an individually driven response to that is not only inadequate, but is very frustrating when you are highly vulnerable to the virus.
Choosing to ignore corona regulations is not an individual choice
Choosing to ignore the science which tell us the way in which corona spreads, and choosing to ignore corona regulations by holding events, going to parties, etc., is not an individual choice. And this is something that many people fail to realise. There is this assumption that, if you choose to take the risk, it will only affect you – and only if you get sick. But in the case of a pandemic and a highly infectious disease, this sort of thinking kills. Despite that it is frustratingly common in the Netherlands.
Sadly, people I know recently announced their intention to run a local, in-person event, at a time when huge numbers of people in Amsterdam are infected by corona. This seems highly irresponsible and – although I am not usually a stickler for rules – goes against the city’s corona regulations. I found myself deeply and personally hurt by this decision and betrayed by their surprising lack of empathy. To give them the benefit of the doubt, I think this probably comes from non-disabled privilege, and ignorance about disability issues – in particular pertaining to coronavirus, which has had a huge, negative and very traumatic effect on the disabled community – and received very little media attention.
I decided to try and turn this hurt into an educational moment and explicitly break down the ways in which holding an event like this would be so detrimental to me personally and to so many other people in the ‘vulnerable’ community, given how easily and unintentionally it could become a super-spreader event. It feels like there is a lot of pressure to “lighten up” about corona and be less stringent, which is an additional unnecessary pressure during a time when extra support would be needed.
I’m not self-isolating out of choice
Something that my partner and I have been made to feel since lockdown was loosened in April or May (I forget which!) is that we are making the choice to self-isolate because we are paranoid and over-cautious. It is seen that we are buying into paranoia and governmental repression and choosing to act on it. In fact it is suggested that we should stick a finger to the government and carry on meeting people physically because this is the only way to stay empowered and keep our political rights. Of course I wish the only reason we are self-isolating is to be law abiding, because then I could get back out, hug everyone and live it up, or maybe even – very radically – fly home to visit my family!
I didn’t really expect that I would need to write this, but here goes. I have an auto-immune disorder and an illness which is triggered by infections. I am in a lot of danger if I get Covid-19. Hopefully, I wouldn’t die but, even if I didn’t, there is a very high chance that I would become considerably sicker than I am now. Whilst, to a non-disabled person, I probably seem like I am pretty unwell already, my ME could make me a lot sicker. And getting Covid is a really quick way to accelerate this. My partner self-isolates, not because I force him too (as some of his friends have suggested to him), but because he loves me and does not want me to die either. Strangely enough, it would upset him quite a bit! For some reason people seem to forget this.
Given how high the infection and death rates are, in the Netherlands, there is a surprising amount of pressure to “doe normaal” – acting like everything is okay. This is very difficult to navigate when you know that it is unsafe for you to do so, and when you are only too aware of how fallible your body is, and of the fact that you can’t get a doctor to fix every illness you have, especially with a new illness. It makes for some very uncomfortable social situations and has involved losing contact with certain friends who are unwilling to meet in ways that are more corona-safe.
The more people infected the higher the chance of catching Corona
I am chronically ill and therefore need to visit certain doctors regularly. I visit my GP fairly regularly, go to therapy once a fortnight, and visit either my osteopath or my physiotherapist once a week. At the moment, I have had to stop attending any appointments in hospitals because, in the Netherlands, they have asked nurses to work whilst they have corona symptoms, due to staff shortages. Similarly, several hospitals have not separated corona patients from the rest of the hospital (there have been instances of non-corona patients being allowed to use lifts alongside corona patients).
I also need to buy groceries because, like many chronically ill people, I do not have the money to pay for my groceries to be delivered, since the minimum spend is more than I can afford. I also use public transport to get to my medical appointments because I cannot afford a taxi or a car. This means I cannot really avoid seeing other people and, whilst I do my best to limit my exposure to the virus, I cannot really avoid interacting with at least some people at that point. If I stop my different therapies, as I did during the first lockdown, I risk suffering another relapse.
By making the decision not to isolate where they can (obviously if people have to work that is not a choice either and I would never stigmatise people for having to go to work) people are risking the infection rate going up, and that means more people will be infected. This means I am more likely to come into contact with someone who has corona virus and am therefore more likely to get it. The more people with corona, the higher the chance that I get it. And whilst the infection rate is so high, holding an indoor event creates a high-risk environment for spreading corona. Pretty logical, but shows why the decision to unnecessary risk getting corona as an individual still effects those around you, and particularly those at higher risk.
Hospitals are filling up
In the Netherlands, hospitals have been rapidly reaching capacity and they have already begun sending patients to Germany, over the last couple of weeks. Many emergency rooms are full, and people are left waiting in corridors for hours. In certain areas intensive care units are also filling up. This means that hospitals will likely start having to make very tricky decisions about which patients to prioritise to. Sadly, and also very unfairly, in the Netherlands, people with disabilities are far less likely to be given treatment above non-disabled people. So, whether I get corona, or have some other emergency need, which is very possible given the fact I have a chronic illness, I am less likely to get the treatment I need.
As much as this sounds like an ethical philosophy discussion, in many countries, this is the current reality. Which, particularly given the circumstances, seems very unfair. If I need intensive care, and person x (who attended an event during corona) needs intensive care, I will be the one who is denied), despite the fact I have been the more responsible person, in the face of the pandemic. Not to mention the fact that in the Netherlands a huge number of those who have died have been living in care facilities of different types, and have had huge access issues in getting intensive care for corona. The Netherlands has very effectively sign-posted many of the most vulnerable with corona away from hospital before they even get there at first.
The effect of the word ‘vulnerable’
In reality, whilst I am more vulnerable than many, using the term vulnerable to describe people with pre-existing conditions that make them more susceptible to corona, is dangerous. It does two major things.
Firstly, it makes it seem as if people without pre-existing conditions, and people who are not disabled, are not at risk from the corona virus, which we know is not true. Many previously healthy people have died or been permanently disabled by corona. I think this distinction makes less at-risk people almost forget their personal risk or at least decide that they don’t mind risking being infected.
Secondly, calling disabled and elderly people ‘vulnerable’ suggests it is their issue if they are affected by the illness. What I mean by this is that it removes communal or individual responsibility towards the more vulnerable, by suggesting that, rather than corona being a dangerous disease, their weakness and frailty are to blame – which again is not true. The idea that this group would die from ‘normal flu’ anyway (something that has been said a lot) somehow excuses people – because if we don’t care about them when they contract normal flu, why should we care about them with corona virus. It perpetuates the idea that they would probably die anyway, which is far from true.
This ‘vulnerable’ branding of the elderly and disabled perpetuates a lack of communal responsibility. This allows people to make individualised choices without having to engage intellectually or emotionally with the direct and potentially devastating effects of their decisions on others.
We need a more communal approach
In order to contain the coronavirus effectively, we really need to have an understanding of health as a social and communal issue. This means that every individual needs to realise that the choices they make, whether they like it or not, will affect the vulnerable people around them – at the moment, the disabled and elderly. We need to get rid of the idea that following corona regulations is an individual choice. But people also need to realise that their decisions will ultimately impact on them because there are far more people at a high risk from corona than is talked about. So, chances are, their lack of awareness or understanding about the communal nature of infectious illness, could end up really harming, if not killing someone they care about.
Claiming to care about a disabled, elderly or otherwise vulnerable person or the group as a whole, yet then ignoring corona precautions, holding unnecessary in person events etc, are somewhat antithetical. The disabled/more vulnerable communities see the way in which you act now and we are hurt by it. And whilst many of us try to forgive and give people the benefit of the doubt it is tiring and it is not easy watching people you thought cared act in ways that put your life in danger.
And, if governments and the general population are still pursuing the idea of herd immunity, as they seem hell-bent on doing in the Netherlands, then the coronavirus pandemic is set to last a lot longer yet. In this way it will kill and disable a much larger number of people. Please be careful and aware of what you are doing at the moment, your choice affects me and my choice affects you.
