This session was part of the Disability and Disaster Resilience Forum held online on 27 August 2020.
Disasters amplify the existing fault lines already experienced by people with disability to live an ordinary life. The best way to truly understand the impact of disasters on people with disability is to hear their stories first hand. Let’s hear what Mark, Tim and James experienced in the midst of 2020’s disasters.
Welcome back everyone, I hope you’ve had quite the party in your household over lunch and all ready and settled in for a cracking afternoon.
Disasters amplify the existing faultlines already experienced by people with disability to live an ordinary life. The best way to truly understand the impact of disasters on people with disability is to hear their stories firsthand as we saw in the last presentation.
This session is a case study video show casing the real life stories and impact on three people with disabilities in the midst of 2020 disasters. Please listen to the stories of Tim, James and Mark.
For those living with disability 2020 has offered many challenges, particularly for those living with disability. Bushfires and the pandemic have made life difficult for these Victorians. Here are three of their stories.
“My name is Mark Oakley and we’re at Dirty Hollow Creek, wisely 20 kilometres east of Bairnsdale. Ever since we’ve moved out to this block, we’ve been aware that bushfires are going to be there for us and every year we prepare for it. This year it was first a big flume, and then all the birds out bush started hanging around the back door squawking and making noise. We felt and knew it was time to go. We packed up our stuff and a few hours later, everything was gone. It just blew there from the south and melted everything to the ground apart from our solar system and batteries, which survived. 30 years ago or so I got Barmah Forrest Virus, Ross River Virus which give me fibromyalgia had a bit of spinal damage on my neck and some sort of growth on my spine up the bottom, emphysema and just had a heart attack a couple of years ago.”
“Marks challenges are that the access into the caravan is quite difficult and showering and going to the toilet things like that is quite difficult. When the bushfires first happened and we come back and decided that we wanted to live on the block we did ask if there were any services out there that could provide us with a portable shower, toilet unit. We’re into the eight month now and still no sign of a shower or toilet block. We’ve been very fortunate we’ve been donated a shed by the Red Gum Church in Bairnsdale. It’s all this red tape, all the hoops you have to jump through and all the paperwork you’ve got to do. Help from the disability services, we haven’t had any. I cannot see why the Government organisations couldn’t have actually helped us more with Mark’s situation.”
Psychologically getting back to my place was a big thing. I just want to be back there and give me peace of mind one way or another. And then after that, the amount of paperwork and phone calls and meetings and things becomes confusing as to what you’re supposed to actually be doing the actual personal need seems to be overrun with furniture, clothes and things. I need a toilet that I can sit down on properly and a shower that if I fall over I won’t break through the glass or Jane can wash me and help me. Not getting those facilities makes it rather difficult and a bit more dangerous for me so I don’t shower as much.”
“COVID has made it a lot more difficult. When the pandemic started, we were living at a caravan park with my mum in her little unit down there. We weren’t quite ready to leave there and go back to the caravan. We hadn’t set up a few little things that would make life easy and then the pandemic started and the owners of the caravan park said we would no longer be able to stay at the caravan park because we weren’t a permanent resident. We had to move into the caravan and just cope the best way we could. Mark wants to see his last days there eventually and that’s his wish so that’s why we would like to rebuild again.”
“We’re connected to it and I just can’t let it go, we can’t let it go.”
Tim Chan has been in lockdown with his mother Sarah in Melbourne.
My brand of autism means I’m dealing with a body that is not always in sync with my intentions so it’s very challenging to go through daily life. The pandemic has brought unprecedented changes to routines on which I rely heavily to manage my constant anxiety, which has sky rocketed. ISO life is difficult because I miss the connection with people. I suppose this is true for each person with or without disability. However, because I use non-conventional communication assisted typing it’s not easy to connect as it takes streaming facilitators with whom I have a personal relationship before I can now put typing. So I am feeling especially alone and vulnerable.”
“My name is Sarah Chan I have a son Tim who has severe autism and we’ve been in lockdown which is having an impact on us and support workers are not really able to maintain their presence in Tim’s life. It’s been quite hard for all of us.”
“My support workers are my friends as well because they facilitate my type to talk communication. It has been lonely. My mum who I live with has to take on all the care and supervision of my daily routines and activities. Because she has been without any respite or support this is taking a heavy toll. Both lack of sleep and anxiety have been the cause of more seizures. I am also afraid of hurting mum or myself when I have fits in case I fall onto her or when she has to physically keep me from falling.”
“Tim is 25 at the moment. He was diagnosed with autism at the age of three. He is a non-speaker he never really achieved speech despite a lot of early intervention. He’s very dependent on me as you can see especially in the present condition. He needs the one to one supervision and attention, support at all times. Yeah, I’m sort of pretty much a full time parent very full time parent.”
“Diversity, I think people can be educated to be more aware of differences and aware of diversity. The Government has been very ablest in their thinking. They should include disability voices, find alternatives to incorporate our perspective and listen to us from different viewpoints”.
“During lockdown it’s very hard to to connect with people in face to face situations. Hopefully when the pandemic ends community groups and organisations can provide opportunities for people with disability to come together. I think it’s very important to talk about your experiences with other people who have experienced pretty much similar things. We’ve become very resilient. COVID-19 is something that we need to go through of course but I think with all the experiences of the past it’s built us up to do that.”
James Griffiths has found life in 2020 increasingly isolating.
“My name is James Griffiths I live in Sale Gippsland Victoria. Volunteering is my everything, it gives me something to strive for and it gives me happiness. It’s food for my soul. The bushfires and this pandemic has made me feel pretty useless. I’m trapped in a black box. Staying at home now, I’m stuck in four walls in a black box. Can’t get out can’t do the things that I want to do. Today for this interview this is the first time I’ve been out of the house in a couple of weeks.
A little known fact about myself is I’m a double transplant recipient. Being immunosuppressed, I’ve got to be very careful where I go what I do how I touch things. During this pandemic, I’ve noticed there has been a reduction with services. Where I used to be able to walk into my local council and find out information most times now it’s all over the phone or it’s all via Zoom. All this new technology I’ve got to learn, it’s not impossible but it’s really really hard considering being blind and not knowing much about technology in the first place and then having to try and learn the new technology to gain the services that you need.
So I’m feeling right now that having a disability I’m left right out of the loop. Facebook for example, there might be a picture that’s been put into a post then on my screen reader I can’t read that because it says picture may contain text. Not all those things are completely accessible. It almost seems like it’s a hassle for a lot of organisations to do it and they get frustrated but it shouldn’t be an afterthought, it should be the first thing they think of how can we make this information accessible to everybody.
Every day I hear there’s been 300 new cases in Victoria there’s been 12 more death. Every day. It makes me wonder if I go out am I going to be the next one of these 300 new people with COVID. Everybody is asking we want to hear it from you want to hear it from you. My message to change makers is get your head out of the sand. There’s a lot more that’s happening out there you just need to look for it. Don’t forget us.”
Powerful wasn’t it.