We lost Ondine Sherwood this week, co-founder of Long Covid SOS, but more importantly the captain of our lifeboat. The logo of our patient-led campaign group is a life preserver. But to most of us, it felt like Ondine was on the lifeboat throwing them to us.
It's been five years since many of us first got sick. And today is Long Covid Awareness Day.
I've learned so much about disability since becoming disabled by a mass-disabling event and by this society. In so many ways, disabled people are damned-if-we-do, damned-if-we-don't. Survival, or existence, is damnation by a deeply ableist society.
The disabled double-bind is arising strongly in many areas of life at the moment, and getting my pressure up with every email digest sent by Disabled People Against the Cuts and every article published by the essential Disability News Service.
This post is largely UK-focused, but I can see these trends emerging in “wealthy” (but unequal) countries across the globe. My spoons will only permit me to look into three areas: access to the safety net, euthanasia legislation, and what I'll call “communitarian salvation from fascism”.
While I like recovery stories, I rather dislike stories that claim “this is what cured me”. I don't believe that we often know what causes people with Long Covid or ME-CFS to recover.
However, I feel like there is a dearth of information out there for people struggling with these conditions about effective treatments. The NHS' own clinical guidelines have not been updated since 2021. So here I'm sharing interventions that help me, that have some sort of scientific basis. Some of them it's early days, and not enough resources have been invested in further research. So this comes with that caveat. Everything here has some, but probably not enough, scientific basis. Everything here is also quite low-risk in terms of side effects, with the exception of HRT.
Moreover, nothing here is super expensive on its own. Although cumulatively, it makes it quite expensive to be ill on a monthly basis especially considering my income has plummeted.
After a couple of years hanging back, to protect my own health, I've decided I need to get more involved in campaigning for prevention, recognition and research on Long Covid with the all-volunteer organisation Long Covid SOS.
Even though we don't have any concrete signs it will happen, I still believe the new Labour government can do better. Which is why I wrote this op-ed recently for the BMJ about better collection of data on Covid prevalence.
I did a double-take when I saw the 50th anniversary of 25 de abril, the day of Portugal's Carnation Revolution is coming up.
I was living in Lisbon during the 30th anniversary. And I'm sad to say that this blog post, that I wrote then as a Fulbright independent researcher, is still really valid. But the sense of societal amnesia is more acute, as a new centre-right government will enter Parliament along side a far-right party called Chega (Enough) that is very openly nostalgic for the values of Salazar.
So I last wrote about “crip futurism” but it struck me that so much about our future will be rediscovering our past. So often I hear white western futurists, or sometimes academics, theorising in very complex language about stuff that indigenous people have known for thousands of years.
One of the parts of The Dawn of Everything by the Davids (Graeber and Wengrow) that stuck with me personally was learning that in the first tens of thousands of years of human “civilisation”, disabled people were not invariably cast aside, treated as discards as our ableist society might lead us to imagine.
I'm newly and invisibly disabled. I'm still learning so much about my internalised ableism, and the ableist world I inhabit here and now. But what's been troubling me most recently is the overwhelmingly ableist visions of the future, especially among progressive communities.
I've had a couple of personal experiences which affected me deeply.
I went to continental Europe for the first time since February 2020 last week. With my illness and disability following the first wave of Covid, travel has become a lot harder for me, and I'd focused on visiting family in the US and seeing friends on trips much closer to home.
A work trip compelled me to go to the Netherlands, where I also got the chance to catch up with friends. From the moment I hit the Eurostar terminal, jam-packed full of loud, squirmy, able-bodied travellers at 7am, I started to get the feels about going “to Europe”.
Last summer, in my small back garden in Nottingham, a smallish city in the middle of England, I found myself simultaneously reading about two rebellions – the outbreak of luddism in this city in 1811, and the Uprising of the Malês, in Bahia about 25 years later.
I'd been made obsolete by Covid, after two years of struggling with pain and crushing fatigue, I stopped working. I am unsure why these two rebellions became the object of my slow, convalescent focus.
So I attended my first work(-adjacent) event of any description since getting sick with Covid in 2020 and not recovering. I felt a bit like an academia-crasher, as I'd spotted “Ecologies of Labour” at Nottingham Trent (around the corner) and I thought it sounded really engaging. As it's adjacent to my field of work, I felt justified in attending.
But when I arrived I realised it was more like a quite intimate workshop, not in a lecture hall. (I think I hadn't understood the academic codes correctly.) I was a little intimidated, as I already feel very conspicuous being the only one with a mask. But I stuck with it.