If you’re here because of my recent interview for theMSGuide.com, hello and welcome. I’m a novelist—this website and blog is mostly about my life and work: I talk about books, book research, cats, SARS-CoV-2, queer issues and disability issues. MS is often peripheral to my interests. Obviously, feel free to fossick about in my essays and blog posts, but if you’d rather just focus on MS then here’s a short resume of me, my interests in and thoughts on MS and disability.
I have MS. I was diagnosed in 1993. I started using a cane in 1999, elbow crutches in 2004, and a manual wheelchair with power assist in 2016. I was one of the first people with MS on beta interferon but switched to Copaxone after bad reactions. I’ve always been a researcher, and in 1999 I came *this* close to persuading my neurologist to give me complete immune system reboot via ablation with cyclophosphamide or something similar. In the end he chickened out. Even today I am still sometimes angry about that. I then tried mitoxantrone which was amazing at first (almost like a miracle cure), then terrible (really bad rebound effect, plus I needed marrow-expanding rescue shots—and let me tell you, that shit hurts) and now, of course, means I have to have annual echocardiograms to look for heart failure and alert to the signs of leukaemia. I’m fine so far. After mitoxantrone I moved on to a variety of other immunomodulatory drugs until Tecfidera utterly crippled me for almost a year with the kind of pain that will drive people to kill themselves. Fortunately my wife is smart and realised it was the drugs causing the pain, not MS. I stopped the drugs and within 24 hours I stopped all the opioids. A week later I had my life back—and that is the closest I’ve ever come to a medical miracle. My only meds now are dalfampridine (a potassium channel blocker—and yes it makes a difference) low-dose naltrexone (ditto) and the occasional pregabalin (GABA analogue, that is, a nerve pain reducer) when an old ulnar nerve injury acts up.
In terms of activism and social justice around MS and disability I joined the the Multiple Sclerosis Association in 2002 as a volunteer and was soon spending 20 hours a week organising things like publicity, marketing, and yoga classes. I joined the board in 2004—and resigned in 2005 when I finally realised the organisation was more interested in perpetuating itself (paying staff—none of whom had MS—and fattening their pension plans) than actually working for people with MS. It left a bad taste in my mouth.
I started writing about disability and MS with posts such as “Lame is So Gay,” and “Coming Out as a Cripple.” I’ve offered my thoughts on MS beginning with faulty lipid metabolism, I write essays and Op-Eds, give lectures, and spent some time pointing out the awful imbalance in crip representation in books and film. I’ve given talks to organisations about disability access and inclusion, consulted on a Hollywood tentpole film in development about a disabled protagonist, and advised individual authors on disability representation.
In 2016 I founded #CripLit and with Alice Wong co-hosted a series of Twitter chats for disabled writers and editors. In 2017 I started collecting a list of books that pass the Fries Test—and the numbers were, frankly, so disheartening that I no longer bother. Though having said that, in the last four years there’s been an absolute explosion in CripLit and if I had to guess I could quadruple that list overnight. Having said that, even if I could multiply the list by a hundred, representation statistics would still be woeful: there would still be 1,250,000 disabled voices missing.
In 2018 I wrote my one and only novel about disability—So Lucky, a short thriller about a woman diagnosed with MS. It won the Washington State Book Award and got good reader reviews—and some appallingly ignorant reviews from nondisabled critics. Ableism is alive and well in all parts of the literary ecosystem.
There’s more to tell of my MS and disability journey, but for now here’s a list of some things I’ve written you might find relevant.
- Lame is So Gay: A Rant — A not-safe-for-work manifesto
- Huge News: Multiple Sclerosis is a Metabolic Disorder — Some research from ten years ago that will one day lead to drugs (currently in development) that could very well change the MS equation
- Flying Internationally With A Wheelchair — Travelling while a crip
- Coming Out As A Cripple — Talking about the social model of disability, disability culture, and finding community
- The Fries Test for Disabled Characters in Fiction — It’s a low bar and still so few books pass it
- Things Disabled People Do — Another bit of a rant this time for Disability Pride Month
- New Car: An Accessible Minivan — All the minutiae you could possibly want about the working of a specially adapted Honda minivan
- Rewriting The Old Disability Script — An Op-Ed I wrote for the New York Times on ableism, internalised ableism, and critical bias in publishing
- Neither Dying Nor Being Cured — The Ethel Louise Armstrong Lecture on disability culture and ableism
- My Health — A personal post about the physical, mental, and emotional cost of Tecfidera
- So Lucky — My award-winning novel about a woman with MS. See also my two-years-later retrospective post about the publishing experience
- Kitties! — Because honestly no blog is complete without photos, videos, and stories of two ferociraptor tabbies named Charlie and George, particularly this piece about their evolving disability consciousness.
One thought on “My MS resume”
Thank you for sharing all of this.
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