Do any other disabled people feel the same way about lockdown as my daughter?
The 'letter' below was written by my daughter, explaining that she feels that lockdown is terribly unfair on disabled people who are not vulnerable to Covid, as nobody would do one tenth for them as they are being asked to do for the wider community.
I’m writing to draw your attention to an issue regarding disability and lockdown, which doesn’t seem to be part of the debate, and which I think is significant.
That is, if what is considered ‘reasonable adjustment’ for people with disabilities under ordinary circumstances is compared with the complete suspension of normal freedom in order to assist those vulnerable to COVID-19, an extreme lack of parity emerges.
COVID-19 is a real and serious problem, but what is being required of someone like myself goes way beyond anything others are required to do when I am the one in need and they are the one losing some freedom or having to go to some trouble. I am used to accepting that it is only fair to ask so much of others, but that acceptance ought to go both ways, and it does not seem to.
What I mean is this. I am personally at no more risk from COVID-19 than from flu (i.e. negligible risk of any sort). As someone living alone and unable to work (Ehlers-Danlos Syndrome plus some of the co-morbidities), I have been deprived of almost all meaningful activities, most of my medical care, and most of my freedom by lockdown. This has put me in a state of life-threatening clinical depression, which is getting worse the longer the situation goes on. Things like bubbles and exceptions for carers, though helpful, are not sufficient. The policy of lockdown, which is doing me so much damage, is considered by legislators to be justified on the grounds that it is put in place in order to help and protect those who are at significant risk of dying if they get the disease – so people at high risk won’t catch COVID, and so they will all have access to intensive medical treatment if they need it.
However, I have spent my life needing and asking for adjustments to live and function. People are by law obliged to make reasonable adjustments. These are comparatively minor things like wheelchair ramps, large print, and allowing admission of guide dogs. In practice, these things often don’t happen, and they are frequently massively resented.
Imagine the response if a person with a disability – perhaps someone with anaphylaxis problems or someone severely immune-compromised – said, “I’m entitled to reasonable adjustments – you’ll have to spend 13+ weeks alone at home, and work entirely from home for a year, in order not to put my life at risk.”
They would be lucky if they were merely laughed at and not condemned as irredeemably selfish. What was being asked of the other person, the restriction on their freedom, would be considered completely unreasonable.
Yet this is exactly what has been done by lockdown, in order to protect a different group of vulnerable people.
If preventing risk to life was usually considered more important than anything else, peanuts and other severe allergens would not be legal. Nor would a lot of other things.
When it is us, “the disabled,” who ask for things, other people’s freedom and right not to have demands made of them is very quickly more important, irrespective of the level of our need.
On the other hand, when it is the people who are vulnerable to COVID-19 who are seen to need something, their vulnerabilities matter more, and any freedom can be taken from others for their sake, even to the extent of placing us in a life-threatening condition of health.
This is not fair, and it is extremely dehumanising. What is a reasonable adjustment for disability under normal circumstances, is a reasonable adjustment for COVID-19, and vice versa. People who are not prepared so much as to let me bring a suitable chair, and get annoyed with me for sitting on the floor, should not now be requiring of me that I give up everything important because they are in need. My choosing to do it might be highly commendable, but it is extremely unjust that it should be demanded.
Moreover, I have had quite a few medical professionals make it quite clear to me that I am not considered worth the medical resources I am taking up – medical resources I have seriously needed are simply not there, and that is considered fine – and yet, when it is a different group of people who need medical resources, policies are actively followed which are known to damage the health of people like myself, in order to make sure they get them. Again, this is not fair.
Are there other people who feel these things are a significant injustice, particularly the issues surrounding what constitutes ‘reasonable adjustment’? Might this be something you would be willing to take up and try to make part of the discussion?