Doing activism my way

I wrote this for (the now defunct) Feminist Writers Festival blog, back in 2018, as I was writing my memoir, Say Hello. I was incredibly scared to publish this piece even, with words mulling in my head for months, after I lost a lot of friends in one go, one reason was that I wasn’t “doing” disability activism right, and there was some petty criticism about the title of my memoir. I worried this piece would result in more angst, fearing that angst would compound when Say Hello was released in January 2019. The piece didn’t create too many waves (that I know of). I had a great editor in Giselle Au-NhienNguyen, who helped me shape this from anxious word vomit to something stronger. I felt proud to have written bravely, thanks to the guidance of Giselle, and also my writing agents and Say Hello publishing team supporting me on the other project I had going.

Things have changed a little bit since I wrote this piece, and since I wrote Say Hello – the response to book has been amazing. People bought it, they read it, they talked about it, they studied it, and it helped so many. But it has been hard. Friendships have ended, friends whom I wrote about in the book. The huge expectations of me (compared to white disabled men, say), as well as lateral violence and online bullying in various forms, has increased significantly. But the love and the support has outshone the hate. It’s been pretty amazing. And if it’s helped one person feel less alone and come to find disability pride, I’ve done my job.

Would I have done a few things differently writing and promoting Say Hello? For sure. I think my biggest regret was not picking up the typos in my final proof read, and then spotting them as I narrated the audiobook, AFTER the paperback went to print! I also would have read more widely before I wrote it – seeking out works by disabled writers, especially disabled writers of colour. There’s some other changes I’d make, in hindsight.

Anyway, I never published this piece here. It’s an article about how scared and sad I was while writing my memoir. Maybe some of you who have written memoirs, or who have a public profile, can relate.

Say Hello: Doing Disability Activism My Own Way

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 therare, 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.

There has been silence from people I thought were friends. There have been suggestions about what I need to include in my book – well-meaning guidance, I suspect, but this book is about my own experiences. There have been whisperings that I am not doing activism ‘right’ through writing this book. I’ve been called too mainstream. The title evokes inspiration porn; it’s self-promotion and brand-building. There’s been criticism of me making money. There are complaints that there aren’t enough #ownvoices in disability literature, but since I’ve been given a book deal, there have been complaints about that.  

I’ve realised that it’s frowned upon if disabled people have individual success – it must be collective. 

There have been the usual challenges in writing this memoir: I worry about upsetting people I know with what I write about them. I’ve caught a glimpse of ugly sides of myself in the mirror, and 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 strive to do better in the future.

But criticisms from within my own community have been the biggest causes of self-doubt, and seen my concerns groweven 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. A month out from the second draft due-date, I’ve been self-censoring because my greatest fear is letting the disability community down. 

As well as being a part of various disability and illness communities, I’ve written for the mainstream for years, through the media and my blog – how can I change perceptions by writing solely in a closed space? The title is inviting people to communicate with me, rather than looking away. While my book is about me, I always try to amplify other voices that are less heard. Yes, I’m being paid to write it, but it works out to be a very modest wage over almost two years. Also, isn’t being paid what activists – including me – have fought for? Finally, I see my individual success having an impact on collective communities. 

Many disability activists are burnt out because of the expectations around how they should do activism. Tone policing and purity politics are scare tactics which distractfrom actually getting the work done.

I admit to have been guilty of criticising others in the same way in the past, and regret telling activists how I think they should do their work. I recognise now that just as disability is diverse, so is the scope of what activism can look like.

When I voiced my sadness recently, a friend told me they received great advice from a university lecturer – to have one foot in the margins and one foot in the mainstream, in order to create change. This is how I want to do activism. 

Say Hello will be the book I needed to read when I was younger. I didn’t have any role models with my conditionuntil I searched the internet in my teens. There were no memoirs on ichthyosis – only medical textbooks with people’s faces blacked out. 

I didn’t identify as disabled until my mid-twenties, when I realised I experienced the same barriers as other disabled people. Perhaps if I had read about disabled people’s firsthand experiences when I was younger, I might have realised my own identity, and received a much-neededconfidence boost, much sooner. 

My book is at once personal and political, from my own heart and experiences. As well as telling my story, it offersreaders advice on how to interact with someone who looks different. It includes disability politics and feminism, and messages to people with ichthyosis and their parents. It is not only for disabled readers – I hope people who are keen to learn more about disability politics and pride will get something out of it, too. 

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. 

It’s for the people like my long-ago self, who yearned to see their truths represented in someone else’s life story – to know that they aren’t alone.

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. I want to see my book on the shelves next to many other disabled people’s. There’s room for all of us. 

Has this post helped you? Will you use it in your work? Please consider buying me a drink – thanks!