Edited by writer and appearance advocate, Carly Findlay, 'Growing Up Disabled in Australia' is a rich collection of writing from those negotiating disability in their lives – a group whose voices are not heard often enough:
‘My body and its place in the world seemed quite normal to me.’
‘I didn’t grow up disabled, I grew up with a problem. A problem those around me wanted to fix.’
‘We have all felt that uncanny sensation that someone is watching us.’
‘The diagnosis helped but it didn’t fix everything.’
‘Don’t fear the labels.’
One in five Australians has a disability. And disability presents itself in many ways. Yet disabled people are still underrepresented in the media and in literature. Growing Up Disabled in Australia is the fifth book in the highly acclaimed, bestselling Growing Up series. It includes interviews with prominent Australians such as Senator Jordon Steele-John and Paralympian Isis Holt, poetry and graphic art, as well as more than 40 original pieces by writers with a disability or chronic illness.
Contributors include one of our very own MS Australia national advocates, Astrid Edwards. Astrid lives with MS, and is a writer, teacher, podcaster and director.
We are very excited to be able to share an extract from Astrid's chapter.
Who Counts as Disabled Anyway?
Astrid EdwardsLet me give you the short list of what can go wrong with my body. In 2013, in Melbourne, I lost feeling in most of my body, from the soles of my feet to just below my breasts.In 2014, in Berlin, I almost drowned in a hot bath when my body, no longer able to regulate temperature, shut down. I remember stumbling out of the bath and nothing more until I woke up on the couch. My partner had spent hours wetting towels, cooling them in the fridge and covering me with them, trying to wake me up and wondering whether to call a German ambulance.In 2015, in Sydney, I had a tonic seizure, a brief but intense fit in which the muscles suddenly stiffen. I woke up beneath my niece’s high chair to see her peering down at me with a quizzical expression. I often wonder if she thought it was a game, and if she will remember it when she is older.In 2016, in an airport, I found myself unable to remember how to get to the gate for my flight. I sat, ticket in hand, and waited for my brain to start working again. I missed my flight. I was too scared to ask for help, because cognitive disfunction (or cog fog, as I like to think of it) can look like intoxication. I didn’t want to be mistaken as drunk – a conclusion commonly drawn about people with my disease when they are experiencing this intense brain fog.In 2017, there were days I didn’t leave home. My proprioception (my perception of the position and movement of my body) was off. I couldn’t tell where my limbs were in relation to the rest of me. Moving objects – including other people – were terrifying. I found myself holding my arms to remind me where they were, and scratching myself until I bled to check I still had feeling.In 2018, in the middle of a remedial massage for neuropathic pain relief, I had a paroxysmal tonic spasm – a fancy way of saying my hands, forearms, neck, mouth and tongue locked. I could not communicate. I could not form words; I could not gesture. I was semi-naked and fully conscious on a table, trapped in my own mind. If I didn’t already identify as a person with a disability, I did from that moment onwards.And these are just the annual highlights...
CARLY FINDLAY is a writer and an appearance activist. She is the author of memoir Say Hello and has been published in The Guardian, The Age, The Sydney Morning Herald, Daily Life, SBS and Frankie. Carly has received an Order of Australia for her work in disability advocacy.