After a dream a couple of weeks back, I was inspired to buy a new copy of Timothy Mo's The Redundancy of Courage. Published in 1991, the novel is a fictionalised account of the 7th December 1975 Indonesian invasion of Timor-Leste, a small territory that had just declared independence from its coloniser Portugal less than a week before. (This after getting the green light from Henry Kissinger, who believed that southeast Asia didn't need a “Cuba”.)
I hadn't realised it was the fiftieth anniversary of the violent day around the time my dreams encouraged me to seek out the novel. I'd just remembered how deftly he had created this distant world for the reader, and invoked the sense of dissociation that occurs with the fog of war descends on a city.
After re-reading the powerful first chapter, which ends with the true-to-life Indonesian special forces mass murder of political prisoners on the capital city's docks, I stopped.
I needed to understand how Mo was able to conjure these scenes.
The new year is a strange time for disabled or chronically ill people. I'm definitely not the first to observe that “crip time” is non-linear, and we experience such a dissonance with the calendar cycles. We also have to listen to able-bodied people make frivolous, and serious, resolutions that only they can make. If we wanted to participate, we could make resolutions about our inner lives, but even those feel fraught with difficulty and risk.
If anything, at this time I realise I need to focus on the cyclic and more-than-human timescales that we can observe in the natural world.
This year, I wrote about a particular kind of tree, that reminds us that what could appear to be an end can in fact be a new beginning.
In work, we're taking on some thorny issues related to our global operations, that any small business or organisation might face. But they triggered a memory of this unsigned “Dear John” letter I wrote when I left the global development sector over a decade ago. Reading it again today, it doesn't feel that dated. As it can only be read via the Internet Archive, I thought I'd republish here, now with my name attached.
I was really shocked to lose Nino, a friend I've watched grow for decades and keep his youthful spirit. Together with a mutual friend, Sophia, we wrote an obituary for The Guardian. While we were grateful to memorialise him in this way, it didn't quite make it through the editorial process intact. Here's the original we wrote together.
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.
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.