Some of the counterpanes are pink, and some of them are blue.—Ian Dury, ‘Hey, hey, take me away’ (1980)
My autopathography, in 800 words. I was born in Glasgow at the start of the ’60s, at home in the kitchen of our Cowcaddens apartment, in fact. As a wee boy in Scotland, I was in hospital for muscle-stretching treatment on my lower limbs, including a period in a residential children’s hospital outside Glasgow called Mearnskirk. This was because I had poor balance and seemed to walk permanently on my toes. Here I stayed in the polio ward, where my bed was at the far end near the windows, past the other wee boys lying in their iron lungs to aid breathing. My mother used to drive out and see me every day. My father actually bought me a present, and I’m told it was the first time he’d done that unprompted. I saw Celtic winning the 1967 European Cup on television in there. I remember I was put in full leg plaster casts for months at home too in the hope that my muscles would stretch and I would be able to walk normally. An experimental surgical intervention was suggested but my mum said no. The Cowcaddens was mostly demolished in the 1960s slum clearances (well, and to make way for an urban motorway. Community clearances) and we were moved to a council flat in one of the new tower blocks in Maryhill. Most of our wider family were displaced to one of the new council schemes on the edge of the city, Easterhouse.
Having our entire city centre community shattered, we took the hint, and joined the Scottish diaspora by moving to England. We lived in caravans and railway cottages in Norfolk (if that sounds idyllic, it wasn’t, but it was poverty). At aged 13-14, I had follow-up tests at Addenbrooke’s in Cambridge and the Jenny Lind Children’s Hospital in Norwich. I strongly remember being forbidden to wear platform shoes (this was the early 1970s. Crushed). Curiously, I was never really definitively diagnosed at age 6-7 or at 13-14. (In the 2000s my Aberdonian consultant Prof Mitchell was most puzzled that I’d never been given nerve conduction tests as a child or youth in Scotland or England. In 2020 the team of my consultant Prof Reilly at the National Hospital for Neurology finally located those old medical records and it turns out I had undergone nerve conduction tests as a youngster.) A few years later, as a punk rocker, it was actually quite an asset to have an unusual gait.
Then I was 40, tripping up a lot (every day), finding myself having real difficulties doing my wriggling children’s buttons up. My handwriting—never an asset or thing of beauty—seemed less legible to my students, though I could usually still read it. Chatting to one of them after a class, a quite disabled guy in his 30s (something neurological and terminal, he told us calmly), I was completely floored by him asking me what I had. I really panicked after that seminar, and couldn’t get out of my mind the look of puzzlement on his face. A while later I actually realised my lower limbs didn’t seem to be doing what I expected any longer, nor could I even lift my feet. I saw my GP, who examined the palms of my hands and fingers as well, and asked how long they had been like that. I actually did reply ‘Like what?’ in an absurd confirmation of the masculine lack of self-knowledge of one’s own body; I saw the blood rise up his neck and face.
Off to the neuromuscular consultant, and a set of nerve conduction and other tests. Anyway, muscular dystrophy it used to be categorised as. Charcot-Marie-Tooth Disease is my condition’s exotic and historic name (yes, that Charcot). Hereditary motor and sensory neuropathy (attenuated muscularity of lower legs and hands/forearms); I’m a classic case. It’s an incurable progressive muscle-wasting condition, which I tend not often to describe it as, since that is usually a bit of a downer in conversation. But let’s not overstate it: there are worse and nastier conditions in the neurosphere, and mine, my CMT, isn’t life-threatening. Something like 23,000 people in the UK have it. At aged 60 I have been definitely diagnosed with CMT Type 1a. Certainty of balance, the ability to stand, walking unaided, physical strength, all are diminished.
Around the time of my diagnosis—it’s fair to say, yes, that was a bit of a personal crisis period—I was at Glastonbury Festival in June 2000, publicising my latest book. I noticed that Ian Dury & the Blockheads were due to play, and went off to see them. I’d seen that very band many times in the past, including in 1977 on the Stiffs package tour, with Wreckless Eric and Elvis Costello, and when Wilko Johnson became a Blockhead in 1981 too. I didn’t realise why I wanted to renew the acquaintance, beyond that I thought it might be fun. Alas Dury wasn’t able to play at Glastonbury that day, being too ill with cancer.
But he was in my head again, that ‘raspberry ripple’, that ‘flaw of the jungle’, and just when I needed him. How very considerate. I began to think about the disabled body in pop and rock, and read around on it. Fortunately there wasn’t at that time that much to read—an excellent situation for a writer looking for a topic or a diversion, seeking some ‘knowledge of selfhood and body-truth’, as Petra Kuppers has nicely put it…. The journey to that knowledge for me started in the Glasgow polio ward in the 1960s and the punk rock scene of the 1970s. From it has come quite a lot of work on polio and pop, an AHRC research project called ‘Spasticus’ (after the Dury song, of course), a book called Shakin’ All Over, focused pieces of writing on punk and disability, on jazz and disability. Applied deconstruction, someone said.