I was reading an article today about a book called "American Dirt". This book had been chosen as Oprah Winfrey’s Book Club Pick. It had attracted celebrity endorsements and was been promoted as "The book of 2020".
However according to the article, the book and publicity tour has been cancelled after very vocal critics argued that it wasn't the author’s story to tell and that the characters were not indicative of their culture.
This happens every day in my community, the Autistic community, where story telling relegates Authentic Autistic narrative to the background.
The rise of the "Autism Mom", "Mummy blogger" and "Celebrity Autism Parent" has seen a frenzy of parents selling out their kids through humiliating stories and through videos of meltdowns posted for the whole world to see, ostensibly for "Awareness". Charities are being created and directed by Neurotypical parents without any lived experience, while so many Autistic led, and operated charities go without funding. Being the author of our own story is so important to us that many of us give up hundreds of hours of our own time. All so our story is heard, and not a pirated copy as told through the filter of Neurotypicality. These stories are a bit like playing "the whisper game", where the message gets more filtered and takes on a life of its own as it's passed from person to person. The story cannot be authentic without the lived experience of the narrator. Every day our community is bombarded with damaging messages such as "Autism is an epidemic". An epidemic is something spread from person to person, extending its reach and affecting a large number of people in a locality at the same time. Autism is not an epidemic, it is not spread, it is not seasonal, and it does not need to be treated or cured. It is a neurodevelopmental disability that comes with challenges and strengths. It is not all rainbows and unicorns, and we aren't superheroes - but neither are we a puzzle.
We are a vibrant and diverse community and we will continue our narrative until it is heard over the storytelling.