Due South: An Exciting Development with a Twist

Audio Version on Substack Mobile App

Hey everyone, it’s Claire here, general renegade steering the ship of Long Covid Advocacy. This is a bit more of a personal post - exciting but with a twist. Like Benton Fraser, in Due South (one for the Gen X’ers), we are having a temporary directional change with a new sister project, @cripademia and a book!

It’s evident since we’ve reached five years that Covid breached our lives that we need different ways to break out of our echo chamber. It feels like the initial momentum and opportunity for change and meeting the needs of the community have plateaued. Not everywhere and not all at once, but it’s there.

This is due to no fault of the community, as I know it’s one of the best, most dedicated counter-publics on the net. It’s actually due to the fault of those in power not listening or acting to protect its citizens. We’re moving into the long game, and this takes re-strategising.

The Exciting Part

Now, what most of you don’t know is that whilst on advocacy breaks for the last few years, I’ve been writing a novel inspired by, you guessed it, “the greatest medical scandal of the 21st century.” (Monbiot). It’s taken a while, as Long Covid and ME are pretty brutal bedfellows.

So this is the exciting part. A way to stimulate the empathy buds through fiction. It’s dark, it’s academic, and it’s a scandal - what better fuel for a literary thriller?

As part of this enterprise, there is a new direction with a sister project to support this book, to keep you informed, and be involved - @cripademia on Instagram.

With a personal rating of 2.7 on the disability scale FUNCAP, much of life is out of reach for me, including reading print books. But what has saved me through many interminable hours in the darkness is audiobooks. Many, many audiobooks! I’ve always been on the swampy side of the swamp with the bookworms. So, this project is a way to share and explore this important dimension for me and to connect more personally with the community.

There is a soft underbelly of @cripademia though, a way to advocate more gently, as there is a focus on disability, sick lit in fact. From Virginia Woolf to Rebecca Yarros, there’s always been disability and illness representation. BUT what hasn’t been done well is a fictional heist of the ME scandal - and we know who held up an entire generation!

The Twist

The twist is that during this summer break I realised it needed a serious revision, including a different time zone - eek. Now I’m out of the fury that descends when a story knocks on your door and demands to be told. (And I am grateful this is the form it took as it didn’t require much conscious effort and flew down on the page.) I need to spend a few months honing its shape and strengthening its bones.

This is good news as it will be better. But it does mean I’ll need to take a semi-hiatus from Long Covid Advocacy for a month, possibly two.

But no need to panic because with help we shall:

• Still be on social media

• Continue the Pedantic Zebra Book Club (updated every 2 weeks)

• Open up our blog to guest writers

• Continue with behind the scenes meetings and bits and bobs

It’s just things might be a bit quieter, and I want our community to be informed. Things aren’t petering out. I’m redirecting the flow for a short while.

I Need You

To make this book as good as it can be and to ensure accurate representation, I need your input. I’ve been dreaming about how I could bring the community with me and include you in the story (and all the best fiction is a lie that tells the truth).

One answer is to collate and ask about your experiences of ME and Long Covid with the medical profession. To enable a low-impact way of doing this, I will be putting Google Forms on social media throughout the next few months, asking for your experiences and insight.

What is Cripademia?

Cripademia, as a concept, reclaims knowledge from a disability perspective. Literary dark academia is the perfect genre to explore crip culture and sickness. It delves into mortality, obsession, hubris, isolation, the body’s betrayal, and the cult of the institution. What better vehicle to investigate what happened within psychiatry and the rise of the mind-body agenda for ME and the shocking impact it had.

The novel is enabling a way to look into the language and how the medical profession allowed itself to be convinced of a new branding of hysteria. It will include medical history and what happens when you take this logic of mind over matter to its extreme.

Cripademia is the launchpad to do this in a different space, one that intersects with the literary world.

Street Team

I hope I have been able to be a cheerleader for you at Long Covid Advocacy, although possibly more all in black with a pair of nunchuks hidden in the pom-poms, as I am fiercely protective of the community.

What I would ask is that as I start to form a street team to build momentum for the novel, would you join me? Buffy had her crew and I’ll need mine. This would be a community of allies happy to buoy this project along. To be honest, I’ve been a bit nervous about launching this more publicly into the world - so your grassroots support would mean the world. It’s also only fair that, in the words of ME advocate Vlad Vexler, this “beautiful community” knows about the developments first.

Numbers do matter, and as I move towards the, come on agents and publishers, dare you engage with a take like this, your engagement with @cripademia would be deeply appreciated.

I will be releasing updates on the work in progress (WIP) and general bookstagram, dark academia vibes. If you love books but need a condensed, nugget approach, this might be for you too.

Do come in whatever cheerleader garb suits you for the ride!

The Empathy Bridge

I’m really grateful I can still write. It’s much easier than the spoken word for me and yet full of contradictions. I haven’t been able to read a print book since I had Covid, but I have written one. This is a reason why I think our illness is so misunderstood; it presents so differently, especially in how we can deal with the sensory world. If people think you can do one thing, they assume you can do another, without seeing the payback, the adaptations, and the horror.

I have hope, though, that fiction is a way to bridge this gap, in a different form. There is a particular type of empathy and connection that happens in the close relationship of narrative between character and reader.

In fact, it has been speculated that with the introduction of the novel, there was an expansion of the moral imagination. This can be seen in the theory of Martha Nussbaum, who argued that the novel cultivates the narrative imagination in Poetic Justice - essentially, the ability to walk in another’s shoes.

ME and Long Covid are areas where human rights have been forgotten. Lynn Hunt in Inventing Human Rights (2007) traces the rise of the 18th century novel as a factor underpinning the idea of universal human rights, as it was crucial in allowing people to ‘feel’ the suffering of others. Maybe fiction is part of reclaiming those rights?

That’s ultimately my aim with this project is to bridge the empathy gap, so people can gain an understanding, an Aha moment. It might be a fool’s errand, but sometimes it takes a fool to jump into the void and succeed.

It’s been deeply cathartic, kind of traumatic at times, but it’s given me the opportunity to exorcise some of the experiences my family has had with the medical profession and advocacy.

It might well be a battle to get it published, as mainstream books about ME and Long Covid tend to lean heavily on the lifestyle recovery trope, yes, think Miranda’s I Haven’t Been Entirely Honest With You and Kate Weinberg’s There’s Nothing Wrong with Her, but I’m determined to give it my best shot.

So, look out, publishing! Dare you take on a cracking story of scandal, malice, and hysteria that challenges the very bedrock of medical practice?

More to be revealed soon…

What you can do!

• Follow @cripademia on IG

• We have some articles already, but do pitch us at hello@longcovidadvoc Requirements: Long Covid/ME-based, 1000-word limit, the rest is the limits of your imagination!

• Look out for Google Forms on social media to submit your experiences

• Send some positive vibes!