Erin Kyan didn’t expect Covid to finally bring the world into his bedroom.
“I do remember being surprised when I got emails for events that were like, ‘Hey, we’re gonna have Zoom things’,” he says, thinking back to the start of the pandemic.
Little did he know, change was afoot.
While it must be stressed that many people with disabilities are more susceptible to the virus and have been disproportionately affected by issues such as panic buying, 2020 has also brought unexpected benefits for some.
From simple things such as increased social connections through Zoom, to telehealth, live-streamed arts and culture, and even digital religious services, there have been new opportunities in almost every aspect of daily life. It has been particularly life-changing for those with ME/CFS, a complex condition often known as chronic fatigue syndrome.
Kyan, 35, spends between four to six hours each day on bed rest. When he goes out, he uses a powered wheelchair.
“The internet is my social place,” he says. “I have my computer set up with my day bed. That’s just how it is.
“And then when Covid happens, everyone was on the internet suddenly. It stopped being just a way to contact people. Now it’s the only way to contact people.
“What that meant was that everyone was suddenly using it in a way that they weren’t before. So I’ve been at least doubly busy socialising as I was pre-pandemic.”
Aside from online catch-ups, Kyan has delighted in hours of new live-streamed art and culture. His favourite so far has been a one-off screening of the Bangarra Dance Company at the Sydney Opera House.
He was also able to see a friend who is a comedian perform because she moved her shows online. Comedy venues, he notes, are often especially inaccessible.
Kyan thinks one of the best things about theatre and live art is what he calls “that kind of temporariness”.
“Everyone goes in and has the experience, and then it’s valuable,” he says.
This year, Kyan has shared in that feeling. But he is also aware the moment may be fleeting.
The societal changes that not only brought Opera House events into his bedroom but also allowed him to see his doctor by tele-health, sparing him a monthly trek just to fill a prescription, are not set in stone.
In August, the disability royal commission heard how many in the disability community were already fearful some of these changes would disappear. One witness, Ricky Buchanan, told the commission: “Everything I have been campaigning for, for 20 years, has now been dropped in my lap and I’m so scared they are going to go.”
Erica Eele, of Brisbane, shares Buchanan’s concerns. “Many of us are preparing for the grief that we will feel when we go back to being socially isolated again,” she says.
As things are, the pandemic has improved Eele’s social life markedly. Eele was diagnosed with ME/CFS in 2016. She can leave home for a few hours a day, but only to quiet places because she is sensitive to loud noises.
Eele is politically active, but often missed meetings with the groups she is a part of because of her disability. In the past few months, she has loved attending these meetings online.
She also relished a recent photographic exhibition about the history of Brisbane that was hosted by Benjamin and Tammy Law. The Queensland state library hosted the event online.
“I wouldn’t have been able to attend due to my noise sensitivity, and all my other symptoms like fatigue,” she says. “I felt so much more included and part of the community. I felt less alone.”
Married father-of-two Alex, who did not want his surname published, says he is no longer bed-bound, but tends to leave home only on special occasions.
Alex, who is Jewish, took part in High Holy Day services during the pandemic. The family connected a laptop to their home projector to watch the service, which was streamed over Zoom.
He says previously he would attend half a service and then find “a quiet place to lie down when the energy was too much”.
Many of us are preparing for the grief that we will feel when we go back to being socially isolated again.
“This year I was actually able to attend the entire service because they were they were online,” he says. “Yes, one or two of those services may have been done from in bed, but that was a freedom I was able to have.”
And from time-to-time, he has been able to do half a yoga class online with his wife. “I don’t need to feel any kind of embarrassment that I can only do half, or that feeling that ‘I’m going to just push through’ but then you pay for it.”
Kyan and Eele are both hopeful that their telehealth services will continue when the pandemic is over. So far, the federal government has committed funding until March 2021.
Eele normally sees a counsellor on the other side of Brisbane. “But now I can do it by Zoom,” she says. “So that really minimises the negative drain on my symptoms. The number one thing I hope will continue is the telehealth.”
However, Eele is less confident her flourishing social life will last when things go back to “normal”. “Sadly, that will go away,” she says. “And I’ll feel sad.”
Kyan has a similar perspective. “We’re all really terrified that once there’s a vaccine, it’s all just gonna pop out of existence again,” he says. “And we’ll be back where we were, where we were mostly socialising with each other online, because we were the most online people we know.”
Last year, Kyan held his birthday party online and noticed some of his friends who were not disabled were surprised by how much they enjoyed themselves.
“They were like, ‘This is really interesting and new and crazy,’” he says. “It was, ‘Yeah, this is just an accessible way for me to have events.’ But now, everyone gets together for Zoom cocktails, and it’s normal.”
As the royal commission heard in August, the disability community had been asking for many of the massive changes that accompanied the pandemic for years. That hasn’t gone unnoticed.
“We’ve been begging for this for so long,” Kyan says. “And now it’s finally here. And then, as soon as abled people won’t need it any more, you’re just going to take it away again?”