A unique memoir from the mid 1980s to 1999.
In 1985 Thatcher’s UK is a battle zone. The miners are on strike and Broadwater Farm is ablaze. I’m obsessed with: writing and The Smiths. I dream of moving to London.
I’m a shy punk mutineer with a passion for words and music, craving freedom from a poor Chiltern Hills council estate. I don’t have what others take for granted. I am disabled. Yet I do have raw, burgeoning talent to fight the demons of indifference, discrimination and out-right bigotry.
I write as if my life depends on it – and sometimes it does. I send a letter to Morrissey and he replies: ‘ You write beautifully, a priceless gift’. Later there is more from him. I write to Ken Livingstone at the GLC and he tells me how to get a wheelchair accessible flat. After a four-year battle, I am moving to a small flat in Leytonstone with my best friend Kate, our wheelchairs in the boot.
Dressed to shock, in micro-mini leather bondage skirts, fishnets and with hair extensions, I’m naïve but knowing, and willful to a fault. There’s parties, there’s sex, there’s music. I write and sing obsessively. I fall in love with my band manager Freddie, friend of Alan McGee, of Creation Records. Freddie pitches my demos to record companies Rough Trade, Glass, Coldharbour. Record executives like my work, my look – but ‘the wheelchair’ is anathema.
I relish my connections with the North London music scene; with Gary Ramon of Colour Tapes and Acme Records; Tim Gane of cult band StereoLab records my first demo tape. The single, Live your Life, is reviewed in the NME, played on the radio and heard by iconic musician Robert Wyatt who gets in touch and supports my work.
My 90s album, Spiral Sky, (now a collectable rarity) is No 1 in Greece for a week.
I join the radical beginnings of the disability rights movement, and am a key activist to the present day - still fighting Thatcher’s legacy. I find a job in publishing, write a sex guide, get married, get divorced, and as the new millennium approaches, I get on TV, sometimes naked.
I write; a novel, some memoir, some poetry, a few plays, endless short stories. Often faced with prejudice, I fail. I suffer, I survive and I sometimes succeed. My disability is never denied - it is part of me - and it is inequality that I fight in all that I do, with blood, heart and a sharpening wit.
Through the years, there’s an overload of adventure, despair and joy. Dancing through a bawdy single life in 1998, I’m working on a short story collection, Cripples Fucking, to be published by Creation. I meet the eccentric archaeologist Gabriel Pepper; we marry in 1999 in matching purple robes - and it is here that the first volume of my memoirs ends.
Journal: August 23rd 1985
My last day at home. So to bed, and my last night in this prison, this hell. A new home – friends, love, sex, literature, art!
I sit in the car, squashed against the window with suitcases and cardboard boxes shoved against me. The car smells of cigarettes and dog vomit.
Jake careens along the A40 and swears at everyone. The old shitty fuckers, the fuckers with dogs, the dickheads without dogs, the fucking bitches pushing babies, the sluts dragging stupid trolleys. There are fucking bastard pakis, chinkies and nignogs.
His short slate hair falls in a wedge onto his veined forehead as his hands grip the wheel like he’s strangling it. I grasp the luggage, which surrounds me, and stay silent.
But I am happy. I have Morrissey’s letter. To me. In his strange block writing. It’s actually a postcard, with him and Sandie Shaw on the front and it’s quite difficult to keep it in the left cup of my bra. But I have to, or I might die.
I dream of his fingers touching it as he wrote his personal message, his essence now on my skin.
Under the other bra cup is a soggy piece of paper with a song lyric on it. Nick Drake’s Northern Sky. This is from Freddie, a sort of love-letter. My boyfriend, my manager with fabulous contacts, a strange male creature with fast hands and convincing words. He wants to make me famous because I write – songs, poems, novels.
When I think about Freddie excitement rises in my stomach.
We hit the fly-over at Paddington and it feels like a take off. The roads are different and confusing. The buildings change into a clash of style and height. Everything crowds together. There are no cows; there is no green with the timid willow trees. This is London. Many floors, history marked in the colour and dirt of its bricks. A smell I don’t know, fumes and people.
This is the London I’ve dreamt of for four long years.
After today, my home. A grown up home. Not with mum, or brother Ant, or the hate-puffed Jake.
But mine with my best friend Kate.
I’m 19, in hospital and on my bed, waiting for the dreaded Dr A. She bellows like a rutting bull, looks like Brezhnev in a dress and scares the shit out of everyone. Including the staff, who are more nervous than we are and jump around like nervous squaddies whenever she marches into the ward.
I’m in for tests and physio. I wait, jittery, keen to get it over with.
I want to put on my cassette player and listen to The Specials but I know I can’t.
Dr A laughs. The curtains shake as the deep sound blasts down the corridor. I stretch my legs out as straight as they will go and wonder whether I should have worn my miniskirt after all. I’ll be told off if she detects things are worse, and if I need a longer stay in the hospital. But I don’t mind too much because hospital is peaceful compared to home.
She’s here, large and loud at my bed, her deep red hair puffed up.
The white-coats herd behind her, a lot of nervous shuffling. There are the junior doctors, the Sister, the senior physiotherapist, students, researchers – we are all very interesting cases. My mouth turns dry and I don’t know where to look.
Dr A has eyes that bore into you like lasers.
‘Hello young lady, here you are again!’
I say nothing and know she expects nothing.
Her lasers switch down and bore into a page of my medical notes.
‘Bloods?’ she barks at Dr. Greenberg. He is red-faced, his thick-rimmed black glasses steaming up.
‘Raised ESR,’ he mumbles, waving a pen over an invisible pad.
‘And what are you up to these days, Penny?’ She says my name with a hint of menace and I know this time she is expecting an answer.
‘Writing.’ The word falls from my lips like an apology.
Dr A stares. There is silence. It goes on. And on. I’m frozen but hot all over.
‘Well young lady,’ she says, addressing her minions, ‘I look at the world today and I don’t think a writing career is realistic for someone like you.’
She nods her head. They nod their heads. Some murmur noises of agreement.
‘I think we’ll follow the usual programme,’ she continues, now in a conspiratorial tone to Dr Greenberg. ‘She’s a classic case and she usually responds well. Oh, set up another visit with Dr Gillette in Psychiatry.
‘We need some sensible plans for your future, don’t we, young Penelope? Get you toughened up a bit!’ She flicks the lasers back on me and smiles like a famished bear. ‘And work hard on those knees. You can’t hide the fixed flexion from me!’
The underlings manage a bout of chortling as Dr A marches on to the next bed.
My eyes blink with tears as I contemplate seeing Dr Gillette.
I suddenly don’t know what I want. To stay here or to go home? Either seems a dead-end, and since my episode with the pills in April I see the shrink at everyone’s whim but never by my choice because I want to.
I toy with my cassette-player to relax into music as soon as I dare, and almost miss a sudden visitor.
She has chestnutty-brown hair to her shoulders, and wheels alongside my bed, her legs out on a board. One is in a splint. Around her neck is a serious looking white neck-brace.
I notice most of all that she has amazing eye make-up.
‘Are you a writer?’ she asks. ‘I’m a writer too. I heard Dr A blaring about it. What do you write?’
‘Anything. Everything.’ I say, amazed. ‘It’s all I’ve ever wanted to do.’
‘Me too. I’m Kate by the way, and you’re Penny, I know.’
‘What do you write?’ I wriggle myself to the edge of the bed to get into my own wheelchair.
‘Mostly poetry. But I’ll try anything. Before I forget, I must tell you, I love that skirt. You’re pretty brave wearing it in here.’
I giggle. Kate giggles.
‘When did yours start by the way? I was eight.’
I know what she’s talking about and am pleased the dreary subject will be out of the way quickly. We are in a specialist hospital treating kids with arthritis, we’re rarities, they tell us – and as inmates we have to ask each other the crucial question.
‘I was almost three,’ I say. ‘Don’t remember much about it, other than being taught to say “childhood rhoomertoid-arthur-ritus” like a parrot when I was very young.’
Kate laughs. ‘Oh god, it’s shit, isn’t it? I mean, who cares after all?’
‘I know,’ I say. ‘Exactly how I feel.’
Within ten minutes we’re at the dining table, reading each other’s work and talking like long-time friends
A two year journey. Many moments of thinking I'd fail. Of believing this was too much and beyond my best efforts.
Who on earth would want to read about some shy little brat from an arse end council estate in the Chalfonts? The timid crip girl who used words to survive Thatcher, prejudice and retaliate against a life not worth living? Who got punked. Who got a best friend. Who got to London. Who…
I hate apricots – who knew that?
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Hello my dear supporters
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Hello friends and supporters
The sun is shining again as I write this, it actually looks and feels like spring. Hurrah for that.
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Happy holidays everyone and huge thanks to new and previous pledgers.
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These people are helping to fund First in the World Somewhere.