Only four months into 2022 we are dealing with a pandemic, a war and then there were record-breaking floods on the east coast of Australia. It's a lot.
How does someone with a disability or a chronic condition cope with the challenges of natural disasters? What can Government and relief organisations do better when trying to support the community during these times including people with disabilities?
Peta chats with Jessica Bean, a Queenslander who is living with Cystic Fibrosis and Diabetes. Jessica was extremely generous in sharing her experiences of living through two natural disasters as a person with a chronic condition and as a Health Empowerment Coach.
Please go follow Jessica on Instagram
Connect with Peta:
The website: www.icantstandpodcast.com
Peta [00:00:02] Hello and welcome to the I Can't Stand Podcast, the podcast answering your questions on what it's like to live with a disability. My name is Peta. I'm your host. I have cerebral palsy and I'd love to answer your questions. This week, we've added doubt happened because you helped. I did a call out on my Instagram to see if I could speak to anybody who had lived through the recent floods that we had in Queensland and New South Wales just contacted me. And just like that, I can present you with this episode so that any further ado, let's hand over to Jess.
Jessica [00:00:51] Thank you so much. I'm really excited for this episode. I think that it's a very much needed topic. My name is Jessica Bain. I am a dog lover, a coffee enthusiast, a regular beach goer, but I also live with cystic fibrosis and cystic fibrosis related diabetes. And I also have the honour of chairing the Patient Voice initiative, which is an organisation that works to enhance the voice of patients in health care decision making.
Peta [00:01:21] So for those of us who don't understand cystic fibrosis, could you explain a little bit about it?
Jessica [00:01:27] Sure, say cystic fibrosis is a genetic condition, it's often considered a lung condition, but what most people don't know is it actually affects nearly every organ in the body. That said, the deterioration of lung function, I think, is one of the key ways that CRF impacts a person's quality of life and their independence. I was born with a life expectancy that was probably only in my teens. So I'm very fortunate to be living and breathing through my own limbs at 34 with at 10:30 for this week. And while I know that there can be mixed feelings about five days, I I very much feel that getting old is a real privilege. In order to keep my lungs functioning as best they can, I need to do eight hours of therapy every single day. I need to take. Over 40 pills every day, so it's also about timing those and taking some with food and not with food and making sure that I get them all in in a day. I particularly in times where I have been more unwell in my life, the physical limitations of lung disease. You know, that can be anything from just being really tired. A lot of the time and having a level of exhaustion, I think a lot of people really struggle to understand. Tasks like washing your hair can be a real mission. And there's been times in my life where I haven't been able to do that on my own. Safe is a condition that has many unseen impact, and I think that that makes it hard for people to appreciate what life we see is like.
Peta [00:03:20] When we consider what you've just said, you contacted media would lovely your contact means if Peta I've just lived through the floods, the natural disaster that we've just had here in Australia. So with your condition in mind, what was that like? Because I mean, I'm sitting here in Melbourne, I don't truly understand, but all the mud and the debris? I'm thinking, Oh my God, that can't be good for anybody's lungs, let alone somebody like yourself.
Jessica [00:03:51] Yes, I will say that this experience was really different to other flying experiences than I have, I have to make it really clear. I certainly wasn't as affected as many people have been through this most recent event. It wasn't the sort of muddy, dirty flooding that we've experienced previously. For people with a chronic illness or disability, there's just so many other things, you know, the complexity about what was in that water that came through. Is there bacteria? Is there going to be ongoing dampness? We couldn't have returned to our place in Brisbane, even though it wasn't flooding because the roads were closed. So there's always that, oh my gosh, when I go. But also, more generally, concerns about medication supply, access to health care and also the. Complexity of COVID, you know, if I have to go to an evacuation centre or I have to come into contact with people where it's not so much of a controlled environment, am I going to contract COVID and then get really sick as well? I just I honestly don't know if you can ever prepare for these situations, I think you can be more organised. I think when we have a plan, we often feel a greater level of resilience. But there are just so many unknowns.
Peta [00:05:28] Yeah, absolutely, I mean, even as you said, gaining supplies of medication and accessing medical appointments is so important for many people with chronic conditions and disabilities like myself. How do we help people that don't understand what it's like to have a chronic condition and a disability for them to better understand how to help us in that sort of situation? What sort of advice would you give people in the emergency services? What sort of things should they think about and what sort of things should they put in place to help people in your situation?
Jessica [00:06:09] It's a really complex thing, I think. You know, you think about situations, and I really think that even just having these conversations, I think is helpful because I think so much of it is unseen and those like things that people are dealing with are unseen. I actually spoke to a mom of a child with a disability, and they had experienced very significant damage to their home in a crazy storm. I think at the end of last year, early this year and say they were living in temporary accommodation, and I know that their daughter has quite significant support needs. And I said to this man, I said, What are you doing for support workers while you're living in these temporary accommodation? And she said. We have no access to support workers at this time, and like to me, that is just mind blowing. You know, if if a person doesn't have people, he can step in. What happens? And, you know, even things like making evacuation centres accessible, making sure evacuation centres have accessible bathrooms. And yes, of course, things like medication supply. For me, it's am I going to have electricity to do my nebuliser? Am I going to have a safe space to do a nebuliser if I was ever to need to go to one evacuation centre? How am I going to refrigerate my medication? Say the dust? There are a lot of things that we need to think about and I think. Given the likelihood that. We are very unfortunately going to be dealing with these situations more frequently. I think we have to have some long and hard discussions about what co-design looks like in these situations and and the responsibility can only be on individuals to plan for these situations. But there has to be responsibility of the system.
Peta [00:08:18] I feel like I could be wrong, but I sometimes feel like that when people think of people going through a natural disaster, they don't consider people with disabilities. I think maybe you might get a disability or as a result of a natural disaster. But as you know, Jessica, you can't just decide one day to not have a disability or chronic illness because it's inconvenient or, you know, might actually have a negative effect to your safety. There's so many elements that people truly don't understand, like as I was listening to you then talking about, you know, accommodation and trying to gain accommodation if you had to evacuate your home. I instinctively think about myself and I think, well, I literally wouldn't know where to start. I struggle. It's hard enough to find accessible accommodation for a holiday, let alone accessible accommodation. That would mean that I would have less support, no equipment. You know, there's there's so many things that people don't truly understand how complex it can be to have a disability.
Jessica [00:09:29] Yeah, absolutely, and in some of these things, it just, you know, it is so simple and so basic in terms of the needs that we have. While we were on the coast, we had a plan to come back to Brisbane. To do a medication run, and it was the weather was so bad in the few days leading up to everything that we couldn't do that. And so I actually ran out of insulin. And I talked to a pharmacy and had to really fight them for an emergency supply of insulin, which is allowed. There are mechanisms to allow an emergency three day supply of medication, particularly to a pharmacy that you have been to before and had to fight them for that. And I was so exhausted that it just felt like an overwhelming challenge. The level of a lack of empathy that I was met with in that situation. Was just really it was really unacceptable, actually. And after a really long, lengthy process of saying look like, I really need this, I'm not trying to get insurance to do anything else with it other than control my blood sugars. And the response from the pharmacist after probably what had already been a 20 minutes exchange was. Sure. Like, I don't believe you. Sure. And I just burst into tears and left because it's those little things that kind of start to stack up in those situations, you know, lack of sleep, which is not good for my health at the best of times, uncertainty around what's going to happen, whether we're going to have a safe place to stay and then having to fight to get medication. So I think in these situations, people with disabilities and chronic illness, they're dealing with everything that everyone else is dealing with. It's not like you can just focus on your your health needs of you're dealing with everything that everyone else is dealing with. Plus.
Peta [00:11:35] There's definitely a discrimination that people face when they have a hidden disability, that you're constantly not believed and it's like God. Come on. This is my life. Like, This is my health we're talking about. You're meant to be. You're the very person that's meant to be protecting someone like myself. And I think that's where there really needs to be more awareness around invisible conditions and invisible disabilities. That just because you can't see your condition, doesn't mean that it doesn't affect you, and it doesn't mean that it's not life threatening in some cases.
Jessica [00:12:14] Yeah, and I think in those situations where you're dealing with emergency workers or health care workers in a really high anxiety, intense environment like nobody is, nobody's at their best. Everybody is stressed. Yeah, we have to make accommodation for that, but we also have to be aware that. For somebody to have to explain their needs 10 times over to different people in different situation on top of the emergency, that is exhausting in itself. And so I think that's where education comes and plays a really important part of preparing for these events and making sure that we're able to offer the appropriate support to people who are navigating a disaster and disability. In 2011, it was a really challenging time in my life. I was having to seriously seriously consider a lung transplant, and I was in and out of hospital a lot, probably every eight weeks, and I'd probably be in for a minimum of three or four weeks. And so we meant he needed a project that wasn't just getting me through the day. And so my husband and I put everything into purchasing a very tiny studio apartment that we renovated and that we hoped would give us some stability in our very unsettled life at the time. And three weeks later, it flooded. And it flooded pure mud. So it was completely unliveable. All the cabinet tree that we'd put in soaked water up, and so it was it was a disaster. So we had to then move back to Tasmania, which meant to be with family, which meant moving away from specialised health care. And it took over 12 months to get back into that property, partly financially, but also there was the fact that I was just dealing with so much in my life and in my health. Then there was considerations like, OK, well, we've cleaned our comment, but it's in a building that was really badly impacted and we can't rely necessarily on everybody having done the right thing and body corporate having done the right thing to make sure that there was mould growing in parts of the building and cavities under the building and the roof of the building, all that kind of stuff. And when I think back to my mental health that time, yeah, it was, it was really hard. I think we were already been taught pre floods. And then that happened, I think that's also where some of my anxiety about flooding events exacerbates, you know, dealing with everything that's going on. Mental health is complex, often in those situation, there's so much physically that needs doing and practically that needs doing dealing with insurance companies. Even after you've cleaned up trying to organise repairs and renovations and or security accommodation, there's just an exhausting amount to do that. It's very easy to forget the mental health staff and and how we're going to manage that. And also, how are we going to manage the trauma of a disaster? And I think for me, that's something that has only really become apparent years later that that was such a traumatic time in my life, and I probably didn't deal with that trauma at the time. I would really encourage people to not see that as a lesser priority amongst all of the other crazy stuff that happens.
Peta [00:16:21] What advice would you give to support organisations and the government and councils to better help people with disabilities in the future when it comes to natural disasters?
Jessica [00:16:32] As one person, I don't have all the answers, but I think it has to start with great design. It has to start with understanding what the needs are, what the needs are of people with chronic illness and disability in these situations during natural disasters and build systems that can support people with chronic disease, illness and disability. In these scenarios, being able to reach out to people who get it during these really intense periods. Also, financial support programmes, I think people don't realise that if you live with a condition and you go through one of these events, there are costs that you experience that a person who wasn't living with a disability or chronic illness would not. Maybe that's emergency medical supply. Maybe that specialised transport in a certain situation, maybe that somebody who has really strict diet requirements and having to pay just obscene amounts of money to be able to access food that they can actually eat or paying the Koreas to get supplies to them. As I understand it, there's no recognition from government from support organisations for that. I do believe that by having these really important powerful conversations, we can start action from the right place, a place of seeing and hearing and valuing people living with chronic illness and disability of working with them. We've got to start with actually really understanding the challenges and understanding the needs of people in these situations and where the where the huge gaps was like, where did we fail these people? Because unless we really acknowledge that we have those tough conversations, we can't fix it.
Peta [00:18:34] Thank you so much for your time today, Jessica. I thoroughly enjoyed talking to you.
Jessica [00:18:40] It's been definitely a challenging topic in and perhaps not the most cheery of topics, but a real pleasure to speak with you. And I appreciate you creating a platform where we can have these conversations and we can shine a light and and hopefully inspire some change from that. My heart really breaks for anyone who has been significantly impacted in these events, and I know how overwhelming it feels right now like I've really been there. As I said, please don't be afraid to reach out for support. Ask what you need if you don't feel that you're being heard. Ask somebody else. And yet remember that there is a level of trauma that you've been through and to take care of yourself because you can get through this, but it will be a challenge.
Peta [00:19:39] I hope you agree with me when I say that I think that was a very worthwhile episode to do on the podcast. I also want to note that I realised that my voice probably sounded a little bit different this week. Sorry about that. I did my best to fix it. But sometimes you can't help. Bad luck. If you'd like to ask me a question for a future episode of the podcast, you can contact me via Instagram, via email and via my website. All the links will be in the description, or if you would be so kind to leave a writing interview on Apple podcasts. I'd really, really appreciate it. OK, guys. Until next week. Bye.