By Carly Findlay
From loss of income and delaying the publication of Growing Up Disabled in Australia, to grieving for the arts sector and connecting with friends, to fear about access and care for disabled people, my time in isolation has been full of anxiety, but there have been sparks of goodness too: time to be creative, more exercise – and virtual drinks.
When people ask how I am right now, the only word I can find is discombobulated.
Late last year during the question and answer sections of my speaking events, the most common question was: ‘What’s next?’
I talked about my next book, Growing Up Disabled in Australia and my calendar filling with events – luckily until August 2020. The amount of work I was getting meant it had definitely been a good decision to leave my secure government job to work part time and freelance in 2016, I thought. And I laughed and said ‘I want a big rest’, because 2019 was so ridiculously busy with speaking events – mostly promoting my memoir, Say Hello.
I never expected this.
A main source of my income is through speaking events.
The week beginning 8 March was the last week of my old life. I was speaking at All About Women at The Sydney Opera House. Speakers flew in from overseas – Chanel Miller, Gina Rippon and Jo Dunkley. Lindy West had cancelled.
At a speakers’ dinner the night before the event, I was talking to a new friend I’d met through the festival. She was due to speak at international events, which had all been cancelled. ‘That won’t happen here,’ I thought.
And then it did.
My part time work at Melbourne Fringe moved from the office to home. I miss the office banter, the ability to turn around and ask work-related questions and the healthy competition of who brings the best lunch. I miss people.
I was due to travel to the UK in July to speak at an academic conference, but it’s been postponed for a year. And in late March, my Order of Australia investiture ceremony was supposed to happen, but it didn’t, and they sent me the lapel pin to wear while I isolate at home.
My friends in the arts – comedians, writers, performers, musicians, speakers, arts workers – experienced similar. Suddenly empty calendars and a lack of income for the foreseeable future. We are all mourning this grim time, and fearing how long it will last. With millions of people losing their work, when will they be able to afford to support the arts again? Why isn’t the government doing more to support the arts sector – which contributes $117 billion to the Australian economy annually? As Benjamin Law, whose play Torch the Place was cut short due to Covid-19, wrote in The Guardian, ‘In times of crisis, we turn to the arts. Now the arts is in crisis – and Scott Morrison is silent.’
Many authors have had to cancel their book tours, and do events online. I was supposed to launch my agent and friend Danielle Binks’ book – The Year the Maps Changed – at Readings. We can’t do an in person launch but we are working out ways to do the launch online.
Growing Up Disabled in Australia was supposed to be released in June, but the publisher and I have postponed it until February. This was a hard decision, but the right one.
All of the contributors are disabled, which puts them at a high risk of contracting illnesses.
If we launched the book in June, it would be likely we couldn’t have physical events, which do so much for sales. If we did have physical events, it would be risky for so many people, many of whom are already susceptible to illnesses. The health and accessibility of the contributors and the readers must come first.
We have been working on access and inclusion since the very first meeting with the publisher, before I’d even got the book deal. This has meant considerations about access around submissions, contracts, editing, the audiobook, book launches and events, and marketing and media.
I don’t want to toot my own trumpet, but I’m yet to talk to another (non-disabled) writer who has considered these levels of accessibility when writing and launching their books. The burden of creating access is often on disabled people.
My skin was really sore in the first weeks after I lost most of my work. My ichthyosis (a rare severe skin condition) flared up, and I know it’s due to stress, and perhaps losing a sense of purpose. It’s good to be able to wear soft clothes and work in bed if I need to, so I can heal a bit better. I am susceptible to catching Covid-19, and so I’m doing my best to stay home. I was worried about needing to see doctors and going to the pharmacy, but my dermatologists and GP have been amazing with telehealth appointments.
Disabled people are really scared right now – especially with the rationing of care that’s taking place in other countries. I’ve heard stories of people are finding it hard to get support workers, and if they do, support workers are not provided with protective equipment. Many disabled people are getting priority grocery deliveries, but often it’s only for those who have a pension card or who are on the NDIS – and not all disabled people receive those supports. Disabled lives are worthy and are not expendable. We are also very resilient – many are used to isolation and protecting ourselves from germs. I’ve seen incredible commentary from disabled people online, and also support generated.
I’ve definitely found some upsides during all of this. There is more time to be creative. I’ve been exercising most days – putting on my gym clothes and going for at least a 30 minute walk run walk – mostly walking and taking photos of flowers, and running a short distance. My body is moving and my vitamin D exposure is up. I’ve done a dance class on YouTube too, but I’m very uncoordinated. I’ve also enjoyed cooking more, using foods in the pantry and trying new recipes. I’ve been reading at least three books a week.
Now, I can attend virtual drinks with my Fringe colleagues on a Friday – I usually miss drinks as I don’t work Fridays. And I am loving the creativity and connection from friends who are putting more work online – as I write this I’m watching new music being performed by my favourite singer on Instagram Live. I am more careful with my money and having fun putting together – sometimes silly – outfits from my very extensive wardrobe. I’m also really grateful for people offering me online speaking work and more writing and social media media management, and giving to my Patreon and PayPal to help supplement my income.
I’ve experienced a huge sense of loss. I’m worried about the income I once had, and the uncertainty of whether work will ever be the same (will I have to apply for a more sensible job once this is over?). I really miss going into the Melbourne Fringe office and seeing my wonderful colleagues. I miss brunch with friends and browsing the shops and planning travel. I’m not much liking the internet congestion – it took me two days to upload a 40 minute video I filmed. I miss travel and meeting people. Some days I’m energetic and stick to a routine, and occasionally I stay in my pyjamas and don’t feel as motivated. And that’s ok.
This is grief.
It’s come on so quickly and we weren’t prepared. In February I cracked a joke about corona virus. I scoffed at the panic buyers. Now, the time at the Opera House seems like years ago. Everything has changed, and I wish we didn’t have to fend for our survival alone. I want Mum to give me a hug and a break from adulting. Only, I can’t travel interstate to see her, so I’ll just have to teach her how to use Zoom.
Carly Findlay OAM is a writer, speaker and appearance activist living in Melbourne. She is the author of Say Hello and edited the anthology Growing Up Disabled in Australia (due for release by BlackInc in early 2021).