Why a memoir

I wanted to avoid the sterility of the academic form, and the unmanageable language of textbooks. The introduce-state-tell- re-state-conclude forms that rob our conversations of their appealing and seductive qualities. I did not want to explain where my story was going, what I wanted you to hear, or what you would learn. I wanted to make you gasp, sigh and snigger. I wanted to sit over a slow lunch wine in hand, and say “come with me on the journey, we’ll have fun!”

 I could have penned a novel, airbrushing the messy bits, and emphasising the lyricism of life. However, I guessed many would dismiss such a storytelling as imaginary. They would dismiss the rough edges as fanciful, the extraordinary situations as invented and the quirky circumstances as unbelievable. I'm sure what I have survived has happened to many, I dare to hope that it is not a common experience. It had to be a memoir, because believe me or not, i wanted you to know everyone was true. That's why it couldn't be tidied or made pretty. Adding fitness, to my mind, would render the tale lifeless. That's not to say I didn't want it to be legible and easy to read, but I wanted to hear myself stutter and breathe - however unsteadily - as I read.

Anita Rani talks about making the individual experience relatable, by penning universal themes. I too wanted to start with childhood, before discussing disability. Because disability is often viewed as exeptional not relatable, so alternative that characters are no longer seen as human. As she says about her own protagonist’s experience of discrimination: ‘she just never gets the promotions. And she's just baffled by how these really average white men keep getting promotions over her and how the confidence to just walk around like they own the planet. And she's just feels like she's hit a bit of a brick wall.’

I wanted the reader beside me in real time, before I shared my learning.

A story can be told in many ways, but I was clear about how to frame the tale. The arc, the development, was intended to be chaotic. Life is! I sat down to put the words down I knew there were things I wanted to say about the reality of being a Disabled woman. At the same time I wanted to avoid expectations, the gross invasions of privacy. An entrenched belief that people have a right to know in order to judge choices. Therefore, I wanted to find a way of talking about the past that explained the present, rather than forgave it. A raw narrative that exposed truth, while making sure that I could protect the softer centre of my privacy. Some decisions were made to make the dismissed more visible.

Although I want my story to read as a novel, by providing enough interest to keep readers awake. I was keen to tell of my path from victim to survivor.  I wanted to avoid the triumph over tragedy, people are neither saints nor sinners, and I didn't want to have to justify my position on such a continuum. I’ve done bad things and good ones, and some of my decisions have been easier to live with than others.

I feel people think they have a right to question disabled individuals about their lives. Often asking highly personal questions about condition and diagnosis. This seems odd to me. Therefore, I chose not explain my impairments at length. The public's thirst for ‘what’s wrong with you’ is triggering. I have the right, I think to keep private things to myself. I wanted my story to have boundaries, clearly avoiding what some people have been asked to disclose.

I decided not to describe acts of violence, individual attacks, or nature of abuse graphically. I cannot know the feelings of the perpetrators. And reliving the worst events would provide gratuitous satisfaction for those who enjoy voyeurism. I chose instead to share my reaction to negative events and difficult circumstances. 

I wanted to write about cultural issues and institutional discrimination, with the aim to articulate their societal impact.  I have drawn on professional wisdom, 30 years of work in disability equality helped me adopt this specifically informed gaze.

I did not want to ignore research and theory. Once an academic always an academic. However, I wanted to try to use this knowledge without the language of textbooks and their jargon, awkward phrasing and academic terminology. If I didn't succeed it would not be for lack of trying.

While I aimed for my story to captivate readers like a novel, keeping them engaged till the end, my primary goal was to narrate my journey from victim to survivor. I steered away from framing it as a triumph over tragedy, recognizing that people are complex beings, neither entirely virtuous nor entirely flawed. I didn't want to justify my position on this spectrum. I've made both good and bad decisions, and some have been easier to live with than others.

I've often observed a sense of entitlement among people to probe disabled individuals about their lives, delving into highly personal matters like their medical conditions  - aiming to decide if their are entitled to rights. I found this intrusive and chose not to delve into the specifics of my impairments until far later in the story. The public's curiosity is invasive, setting as internalised oppression, and I believe I have the right to maintain privacy. I set boundaries for my story, avoiding divulging details that others may have chosen to share.

I made a conscious decision not to depict acts of violence or abuse graphically. I wouldn't presume to understand the emotions of the perpetrators, and I didn't want to provide gratification to those who indulge in voyeurism. Instead, I focused on sharing my responses to challenging circumstances.

My narrative delves into cultural issues and institutional discrimination, aiming to shed light on their broader societal implications. Drawing from my 30 years of experience in disability equality work, I wanted to share a professionally informed perspective my pages. After encouragement, I enjoyed this opportunity more than I expected.

While I didn't disregard research and theory, my approach was to present them without the dry language and academic terminologies. Instead I endeavoured to integrate this knowledge seamlessly into my storytelling, striving for accessibility without sacrificing depth. If I fell short, it wasn't for lack of effort, but rather the challenge of translating academic insights into engaging prose.

Survival! A memoir - 📘