Like many artists, COVID-19 has impacted me in a huge way. I’ve had almost all events from March to July postponed or cancelled, my income has decreased significantly. I am working from home for both my freelance work and in my part-time job as Access and Inclusion Coordinator at Melbourne Fringe. I have been feeling a sense of shock and grief.
What the hell has just happened? 2020 has not gone as planned.
My second book, Growing Up Disabled in Australia – an anthology with Black Inc – was due out in June 2020. It features over forty contributors who are disabled, Deaf, chronically ill and experience mental illness. I am so proud of the diversity of the stories and the talent of the contributors. There is a hunger for authentic, first person stories about disability – this is the first book of its kind to be released in Australia.
I was looking forward to promoting Growing Up Disabled in Australia, albeit on a reduced scale (compared when I launched my memoir last year). I want to ensure the contributors voices are centred, and I’ve been working on preparing them to do media and festivals. We had so many events booked in already.
As my calendar cleared in mid-March, I received an email from the publisher at Black Inc telling me they’d made the decision to delay Growing Up Disabled until February 2021.
Oof. Another blow.
Publishing and promoting post-COVID-19
What will life be like in 2021, with new social distancing measures introduced day by day? Will people even have the money to buy books then, with increased unemployment?
As I write this, we are in stage three lockdown laws and holding and attending book launches is definitely out. While this decision stung for a day or two, I’ve had the luxury of having time to reflect, and my thinking shifted. This was the best decision for the contributors and for the book, and for the book’s readers. I feel I have a duty of care to the contributors and audience – I want to keep them safe. And I want the book to have a chance to shine in its own right.
This decision to delay the release of Growing Up Disabled in Australia was about access. And I’ve been working on access with Black Inc since I pitched the book idea to them, noting that we will need to consider access in all areas of the publishing timeline – from the submission process and contracts to editing and the launch events. The contributors would be disabled, and many of our audience would be too. (It’s important the publishing industry creates accessibility for all writers and books, not just for disabled writers.) I didn’t want to create added stress for the contributors, as all have been impacted by COVID-19 in some way.
The impact on the community
Many disabled and chronically ill people are more susceptible to contracting COVID-19 because of compromised immune systems. This is a very difficult time due to a shortage of disability support workers, a lack of protective equipment for support workers, isolation and feeling cut off from society, the Disability Support Pension not being raised in line with the other welfare payments. and in some cases, the de-prioriortisation of care due to disability. Some disabled friends also tell me they’re overwhelmed by video conferencing –it’s not accessible for everyone; and others are fatigued with having to communicate with so many organisations to negotiate support since things have changed.
I chatted to three of the contributors about the decision to delay the release of Growing Up Disabled in Australia – El Gibbs, Gayle Kennedy and Anna Whateley. While they are all sad, they understand the reasons for our decision, and think it’s the right thing to do. All three writers are used to some level of self isolation pre-COVID-19, because of their disability. I also asked them how they’ve been impacted by COVID-19.
Gayle Kennedy, a First Nations woman, describes her chapter as a short memoir. 'It talks about my youth and also my experience with an abusive husband and how I pulled myself out of the abyss. It also talks about coming to terms with the loss of my mobility due to Post-Polio syndrome.’
Kennedy has lost a lot of work due to COVID-19, including appearances at writers' festivals and scheduled performances. While she tells me her disability has not been impacted because she’s on the NDIS and can employ support workers, she does think COVID-19 has created awareness in how marginalised people live.
'I think it’s been a wake-up call for many people. Being moved along by police, not being able to enjoy the parks etc. without being hassled by police, being pulled over and asked to explain themselves for no apparent reason, children being ordered out of playgrounds and their pushbikes. This is how Black people the world over live everyday – always on the lookout for trouble, ever alert, never truly being able to relax. I hope people learn some empathy from this experience.’
She is also concerned about the way disabled people have been forgotten.
'It’s been very disturbing also how we people with disabilities have been portrayed as collateral damage in all this; the idea that we would be triaged as last in line, that we would be almost bullied into signing the do-not-resuscitate section of medical forms is horrifying. Social engineering at its worst. Also for people 70 years and over. Do we turn right or do we turn left. It’s cold blooded and callous and ableist in the extreme. I have been truly disturbed.
'We need as a society to take a long hard look at ourselves and start building an inclusive society those values everyone and not those deemed socially and physically acceptable.'
El Gibbs wrote about the first few years of being sick – what happened to her, but also about how she felt and understood her illness. 'It's also about how I came to understand the social model of disability and the key questions that I grappled with between my impairments and disability as a social and political issue,’ she said.
Life during COVID-19 has been stressful, especially due to changing and disappearing supports, and being dependent on others.
'I'm at high risk, both of getting the virus, and of having a bad experience if I do, so I've been on isolation for a while now. Some of the key systems that helped me stay independent before this have disappeared, so it has taken me a while to find new systems and supports. I've found this to be a difficult, and very stressful time.’
While she has been mostly housebound prior to COVID-19, she has been a little surprised at how difficult she’s found moving to total isolation. 'Not being able to do small things for myself, or to have contact with friends, is really hard,’ she said.
Read: What to read in isolation: book reviewers recommend
Gibbs has been writing a little during lockdown, but mostly she’s been knitting and learning how to make socks. Her work has not been affected in a negative way due to COVID-19.
‘I've actually been included much more than I have been before, as events have moved online. I hope that kind of inclusivity continues when the physical isolation comes to an end. I hope that all the events and employers who said that participating or working from home was impossible, remember that it very much is not.’
Anna Whateley’s piece in Growing Up Disabled in Australia is about the noise and the silence of growing up with undiagnosed autism, ADHD, sensory processing disorder, and Ehlers Danlos Syndrome. It includes pieces from her diaries as a child and young adult, report cards, letters, teacher comments, and diagnoses.
Anna’s disability classes her as high risk, so she hasn’t been out of the house more than three times since lockdown began in March. She’s also adjusting to home schooling duties.
'I have three children who each have specific learning needs/disabilities. There are no increases in carer payments. I’ve created what I hope to be a good learning environment for them here, but I’m quite frightened about the responsibility of keeping the four of us motivated and structured when I won’t have any down time, alone time, or free space.’
Anna’s first young adult novel, Peta Lyre’s Rating Normal is also out this week. While she’s disappointed to have missed some writers' festivals that have been cancelled, she tells me she’s busier than ever. She is doing some online events to publicise her book, as well as running her Zoom based #AusChat with Australian writers, which she created at the beginning of lockdown.
'I started a project called #AusChat because I felt lonely, and like I wouldn’t be pushed to meet new book-people in the lockdown. It’s been wonderful! I use Zoom, record and edit it for YouTube, and put a short version on Twitter. I didn’t really plan it much, but so long as people are interested in saying hello, I’ll keep going. The impulsive side of ADHD can be great!’
She’s hopeful for the post-COVID-19 world. 'Another bonus will be that these events might be more accessible to those who would previously have been unable to attend due to inaccessibility. We are now more familiar with the technologies that make remote access a reality.’
Growing Up Disabled in Australia will be out in February 2021 and is available for pre-order from Black Inc.