The struggle as a disability activist while writing my memoir

 

I wrote this for the Feminist Writers Festival, on the struggles I’m having writing my own book as a disability activist. It’s not just the enormous amount of work that is difficult, but the purity politics. It was a difficult piece to write because this has been a difficult time.

 

Book writing is hard.

Last year after getting an agent, and sending out some book proposals, I got a book deal with HarperCollins. I’m being paid to write a memoir which will be on actual book shelves and in ereaders! A dream come true! Many writers and readers see the pinnacle of success as a writer as getting a book deal – and I did too (my Gorman purchase history showed just how much I celebrated this book deal!). I was so excited.

I have been writing for a long time – almost 10 years in a professional sense. I write for the media and write speeches. I’ve written for government communications and have taught people writing. And I’ve blogged on and off since 2001. I thought my previous writing experience would prepare me well for writing a book. My blog and media genre is memoir. I mostly write about my own experiences on disability and appearance diversity. Easy, right?! But I can confirm that writing a book is not just like writing a series of blog posts or op-ed pieces. It’s the hardest thing I’ve written.

It’s long. My first draft was 85,544 words. Eight times my Masters thesis. When I got to 50,000 words I cried. It got boring writing about myself and reading these words over and over. And I found it hard to develop a story arc throughout the length of the book. Fortunately I have amazing editors.

Writing a memoir has meant I’ve caught a glimpse of ugly sides of myself in the mirror. Delving  into my history, I’ve found things I don’t like about myself, or that I could have done better. Putting words on a page helps me come to terms with those things and I can strive to do better.

I have put book writing before most things in life – while juggling  a part time job, freelance work, my health and relationships. As I get closer to deadline, I’m setting more boundaries than ever. Do I want to go out to the theatre? Got to write the book. Have I got time to write an article or do an interview? “The book comes first –  can I wait til it’s released?”, has been my standard email reply. And just this week, when I found myself snowed under with work, and sore, I felt bad for having a break because I have to write this book.

My excitement has faded a little. And it’s not due to the hours and hours of hard work. It’s the reactions I’ve received about writing a book. There have been a few comments along the “you’re not old enough to write a memoir” – which is funny because prior to getting a book deal, I wasn’t considered a real writer to some because I hadn’t yet written a book – the majority of my writing has been online. There has  been some silence from people who I thought were friends. There have been some suggestions about what I need to include in my book – well meaning guidance, I suspect, but this book is my memoir, about  my own experiences. And there’s been some whisperings that I am not doing activism right through writing this book.

There are complaints that there aren’t enough #ownvoices in disability literature, but since I’ve been given a book deal, there’s complaints about that.  

My book hasn’t even been written and there are so many opinions! And those critics will only get louder when my memoir goes on sale.

My self doubt is growing louder. I’ve called my publisher and agent, worried I can’t do this. I’ve woken my partner screaming from a nightmare that my book has set disability rights behind.

Since I decided to write my memoir, I agonised over the fear that I might let down my own people in the disability community.  I realise I’m writing from my own perspective but I also hold a position where people look to me for advice and knowledge through being in the media. I never claim to speak for every disabled person and always want to amplify other voices.

I also worry that I’ll write about someone I know and upset them. Should picking at old wounds be done off the page?

All of these fears have meant I’ve forgotten the many, many people I’ve actually helped through my writing.

My memoir is for the young people with Ichthyosis, for the parent who worried about the future of her child, for the woman a few years older than me who worried about wearing a summer dress until she saw my outfit photo.

This will be the book I needed to read when I was younger. It might not be for everyone, but it will be from my own heart and experiences.

The tone policing and purity politics involved in activism means that there’s so many distractions from actually doing the work. It’s scare tactics. There’s not one way to do activism, nor is there one type of disability memoir. I want to see my book on the shelves next to many other disabled people’s. There’s room for all of us.

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Edit: the FWF website has been decommissioned. The below link no longer works.

Read it here.

“Around a year ago, I got a book deal to write a memoir. Due out early next year, Say Hello will tell my story of life with the rare, severe skin condition ichthyosis. Writing this book has been the hardest thing I’ve ever done, but not just because of the length or the subject matter. It’s because in the process of writing this book, my disability activism has been questioned….

“I could either be stifled by fear and do nothing at all to create change, or do activism my own way, and create something I needed when I was younger.”

Thanks to the Feminist Writers Festival for having me. Attend the Victorian events on 25 – 27 May.

More writing like this will be in my memoir Say Hello, out in early 2019. Sign up to my mailing list for updates. 

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Image: woman with red face, short dark curly hair and bright dress, smiling. Above the photo is text in the form of a red and blue logo that reads “Feminist Writers Festival” and a heading and byline that reads “SAY HELLO: DOING DISABILITY ACTIVISM MY OWN WAY
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By Carly Findlay”.