‘A book that must be published’

By Penny Pepper

A small council flat in Leytonstone, nestled on an estate within the posh Victorian town houses; my first London home.

It’s 1985 and I’m learning with my best friend Kate the exhausting realities for two wheelchair-users living without any genuine social care. Our fast beloved home help Sandra – sent directly from the local social services – supports the two of us for a meagre six hours a week. But we’re young and so what if we have to choose a hair wash over the preparation of a hot lunch?

My memoir, First in the World Somewhere, starts in the 1980s and finishes at the end of 1999, weaving through those years in which the disability experience shifted significantly to include the development of independent living and a culture of disability civil rights. The UK’s disability arts scene also exploded during this era, perhaps as a retaliation to the ignorance shown by Thatcher and her ideology: “I believe that most of us get a special satisfaction from helping them [disabled people]…We are grateful for their example.”

It was a time before the Disability Discrimination Act and independence as we now understand it.

Yet who was I? An oddly shy punky rebel, a country girl stuck in a sprawling council estate in the Chalfonts, determined to find my way to London, against unimaginable prejudice and resistance – from social workers, doctors and even some of my family. It was rarely done and the options for someone with my level of impairment were usually the care institution, or my mother and myself chained in that inevitable carer and cared-for role.

But from an incredible friendship with Kate, forged on a hospital ward, we set out to free ourselves. Mutually supportive of each other’s work as writers, Kate also encouraged me as a singer/songwriter. Via a pleading letter from us both, Ken Livingstone helped make our move to London a reality, and I began to thrive – at least creatively.

The memoir starts in the early years of my life in London – falling in love with my music manager, making a seven inch single, defiantly called Live Your Life. A first-generation punk crip who skirted through new romantic pop into a music junkie indie kid, lurking with many in the north London music scene, including Alan McGee of Creation Records.

I made connections to protean organisations including Arts Line and the late, lamented London Disability Arts Forum. Despite negligible support, I fought the daily grind, in part through finding a supportive boyfriend; sadly the never-ending strain of survival wore Kate down and she left our shared home after 18 months, and a frightening dose of pneumonia. For me, with fragile mental health since my teenage years, the effect was extreme mental distress, exacerbated by constant misdiagnosis and psychiatrists telling me I would always be suicidal because, after all, I was so horribly disabled – what did I expect?

To my own surprise, I got married. I made an album. I joined every rights-based disability organisation that I discovered, connecting with like-minded people. Throughout it all, I wrote and I wrote; endless poems for fanzines, the first user-led sexuality guide for young disabled people and short stories for Disability Arts in London Magazine.

First in the World Somewhere will be published by Unbound, who signed me because they believe this story has not been told this way before, and because they believe in it as a quality piece of writing. Many, including John Pring (editor of DNS), believe it is a book that “must be published”, and I hope many readers will agree and help me on the journey to make this happen.

Unbound is an award-winning, traditional publisher, whose lists include bestsellers and Booker longlisters. Their unique model involves crowdfunding initial production and then working with Penguin Random House on distribution into the shops. 

If you go to my Unbound page you can see the level of crowdfunding rewards, from e-book all the way up to patron. There’s a synopsis and an excerpt from the opening chapter. Any level of pledge is greatly appreciated along with sharing. Pledges have to be made by 31 January, but any event or reward booked can be arranged at mutual convenience. As you will see, I can be booked for a talk and small/large book club. I can be flexible in what these events are and can include Q&As, signings, short workshops etc. I’m willing to travel within the UK with appropriate notice.

First in the World Somewhere is the story of a hidden class of young disabled people developing their own answers and frameworks to understand their place in an unaccepting world – one that to some extent still exists. A world which decries you a charity case, a medical specimen, a brave Paralympic super-human; and these days, a skiver. And if nothing else, what we fought for during the years of my memoir is now under grotesque threat through government cuts. The closure of the Independent Living Fund, which revolutionised my life; the backward steps of the work capability assessments, the dismantling of disability living allowance and the arrogant theft of our ideas of personalisation. Plainly, while I am an old campaigner, it seems I cannot be put to pasture just yet.

It’s rare we are portrayed as simply human, flawed, contrary and three-dimensional – but I intend to change that and start the process of writing the missing fragment of the human story.

Photograph: Penny Pepper, by Elixabete Lopez