There is a narrative the abled world expects about illness and disability. Our stories are supposed to have a satisfying arc of linear progress and struggle against the odds, using our willpower to command our stubborn bodies or minds, and end with a triumphant outcome where we “overcome” our illness / the thing that makes us different, and end up either restored to our previous health or at least able to do things in a way that is indistinguishable from the way abled people do things, and without requiring any accommodations1 . Then the abled world can move on from having to worry about us, or to make any changes to how things are done to accommodate our needs - after all, we have proven we don’t need things to change because our willpower and tenacity is enough! Who needs wheelchair accessible buildings when we have a positive attitude2?
Because of that I’m hesitant to talk about how my recovery is going, as I don’t want to feed that narrative. However I know my lovely friends want to know how I am doing. SO.
I can walk more than I could, I can sit up more than I could, and I can drive more than I could. I still can’t do nearly as much of those things as I used to be able to before getting ill, but it’s enough that I can do some fun things if I plan carefully. I still need lots of rest after doing anything vaguely vertical - I am told people with POTS expend around 3x more energy being upright than the average healthy person, and it certainly feels like that.
I have loads of weird food allergies still, and basically can’t eat or drink anything fun. I also have a buffet of random new symptoms than come and go, or come and don’t go. To name but a few, I have new gastrointestinal issues that showed up one day about a year ago and never left, and the skin of my left hand now weirdly develops hives when it comes into contact with water. (why??!!??) My periods are SUPER weird now, and these days I really easily injure (and have to rehab) tendons and muscles, mostly in my wrists and forearms. Thankfully my physio is great and all the stuff I’ve injured so far has been fixable, but I do a lot of physio exercises to maintain my complicated body.
I’ve gone back to work a few hours per week, 100% remotely, which I’m really enjoying, but I miss hanging out with sticky toddlers and spending lots of time with my families, which I am not well enough to do (and it’s too much risk of infection for me). I am lucky (children and families in need of support, not so much) that there is an unprecedented shortage of social workers, so I was able to basically name my terms. This isn’t normally an option for disabled social workers, and it’s a profession notoriously short of decent part time and flexible options, but thankfully an old colleague of mine who knows the quality of my practice was happy to take me on.
I may not ever be completely well again, and that is OK. Although managing my body’s needs can be a bit of a wild ride, the thing that lowers my quality of life the most is the world outside my house being inaccessible to me. When I was using a wheelchair and a recumbent trike to get around due to difficulty walking, I couldn’t get into the polling station because there weren’t proper ramps. I couldn’t navigate pavements because people parked on them. I couldn’t cross the road safely because people parked across dropped kerbs. These days although I am physically able to do lots of the things that I enjoy - see a band, go out for a meal, go to the cinema - I can’t do those things in practice because of lack of will from the majority of the public to make those places safe for immunocompromised people like me.
As we saw with the precautions that some of the most powerful people in the world took at Davos recently, Covid is still here and still dangerous and unpredictable. The only way you can assume that you will not ever have a negative outcome from having Covid - perhaps on your fourth, fifth, sixth infection, regardless of whether you have passed through a bout unscathed already - is if you think you have done something differently or better (or you are inherently different or better) than those of us who have had bad effects from it. Improving ventilation, masking in indoor spaces - and before anyone whinges, people manage this in e.g. Japan all the time - and regular testing, would mean I and people like me could safely be part of public life again. However it is clear that the majority of society has decided that my needs and the needs of people in my situation are not as important as the feeling of not thinking about Covid any more.
I understand why at this stage in the pandemic people have chosen denial. Lockdown was traumatic for a lot of people, and knowing that the people who were supposed to be in charge of protecting us were making inconsistent rules mostly designed to protect their rich mates was frightening and stressful. Being afraid of dying or of your loved ones dying is traumatic. Grieving the death of a loved one is unbearable. Having your day to day life disrupted and your coping mechanisms taken away is hard. I understand that thinking about taking precautions against Covid triggers this trauma. But think about how we are living, those of us who are still living that experience. We are still in lockdown, except the government has stopped counting Covid cases. A vaccine that doesn’t prevent transmission or Long Covid is considered adequate because it mostly prevents people of Tory voting demographic from dying.
Most people (because they want to, because it’s more convenient than disrupting their lives, because it’s preferable to triggering the trauma they have from the early pandemic, because even if people want to take precautions, how do you do that with children in school bringing it home every few months?) have bought into a collective fiction that there is nothing more that can be done about Covid than we are doing now, and that Covid is endemic and therefore nothing to worry about. (Malaria is endemic in some parts of the world, so is tuberculosis. Smallpox was endemic.) This fiction excludes people like me but forgetting about us is part of this fiction.
Please don’t say you’re sorry about how I’m doing. My illness is part of me and I accept myself and how my body works without reservations. It is perfectly possible to live an awesome life as a sick and/or disabled person, if you have the right resources and accessibility. If you are sorry about how my illness affects my life, then help make the world safer for me to navigate so I can go out and have some fun.
a common way this is presented is in people, mostly men, who have injuries from being soldiers in war, and who do feats of strength and endurance etc “despite” their injuries. When of course there are many day to day changes to those people’s lives that are not shown when they are climbing Kilimanjaro on no legs or whatever - e.g. stump pain, constant prosthetic adjustments, having to give your stump(s) a break and use a wheelchair for a few days, phantom pain, invisible injuries from head trauma or PTSD, etc etc.
I think it’s totally understandable for people who were previously very physically strong and active to want to be part of this narrative about how they still have value and are “normal” and don’t need accommodations. But I think that’s internalised ableism.
Also I think it’s sad that it’s so often men, who have killed in the name of British imperialism, who are held up as worthy disabled people, when the majority of chronically ill people are women, who are still ill precisely because their diseases have been neglected by medical science because they are women. (Who also haven’t killed anyone.)
https://www.ted.com/talks/stella_young_i_m_not_your_inspiration_thank_you_very_much?language=en