The Sunflower Conversations
Welcome to the Sunflower Conversations, the podcast where we explore the experiences of disabled people with non-visible disabilities through the lens of the Hidden Disabilities Sunflower.
This is a space to hear authentic stories from disabled people navigating life with non-visible disabilities such as chronic illness, mental health conditions, neurodivergence, and more. While most episodes focus on lived experience, we also feature occasional insights from experts in healthcare, accessibility, and inclusion.
Whether you or someone you care about wears the Sunflower, our conversations aim to raise awareness, build understanding, and help create a more inclusive and compassionate world.
Empowering voices. Raising awareness. Challenging assumptions - one conversation at a time.
The Sunflower Conversations
Cerebral Palsy and BPD with Laura - Australia and New Zealand
Laura Pedernuzzo shares her experiences living with multiple disabilities and provides invaluable insights into disability advocacy. She explains how both visible and invisible disabilities shape her daily interactions with the world, highlighting the unique challenges of each.
• Living with cerebral palsy creates physical barriers, but the fatigue it causes is often misunderstood
• People with borderline personality disorder are often mischaracterised as manipulative when they're simply trying to cope with intense emotions.
• The concept of "crip time" acknowledges that disabled people don't have "the same 24 hours" as non-disabled people.
• Approximately 44% of Australians have low literacy levels, making accessible communication essential.
• Easy Read uses simple language and images to make information accessible to people with low literacy.
• Continued COVID-19 precautions are vital for creating truly inclusive spaces
• Small actions like acknowledging access needs show disabled people they matter and their needs aren't burdens but rights.
We acknowledge and pay respects to the traditional custodians of the lands on which we record, and especially to those who may also be living with a disability. Welcome to another episode of the Sunflower Conversations, where we will explore a variety of disabilities, the way in which people experience their disabilities and discover the opportunities for society to make access and inclusion improvements for everyone. My name is Flick Manning and I'm your host. Hello everyone, I'm Flick Manning and like many of the guests on the Sunflower Conversations, I too have hidden disabilities like Crohn's disease, lupus and Raynaud's syndrome. But today I'm joined by Laura Pedernuzzo, a brilliant human from our community who regularly writes about disability in popular media like SBS, abc and the Age. Laura, welcome to the show.
Speaker 2:Thanks so much.
Speaker 1:Pleasure to have you here Now, laura. You've written extensively about disability rights in particular, how have your own experiences with conditions like cerebral palsy, anxiety and borderline personality disorder shaped the way you get to live in the world day to day?
Speaker 2:Those experiences have been integral to the way that I live in the world day to day.
Speaker 2:I think each of those shape my experience of the world in vastly different ways, though.
Speaker 2:So for me, having cerebral palsy, which manifests as muscle spasms and like fatigue and aches and pains, that's shaped the way that I live in a way that I think is relatively easy for non-disabled people to understand, because they'll see me going out and about in my wheelchair or they'll see me walking with a noticeable limp, and so it's almost, I suppose, easier for people to fathom what it means to live with something like cerebral palsy, to fathom what it means to live with something like cerebral palsy Specifically, that's cerebral palsy and the physical disability shapes whether or not I'm able to access physical spaces, but also, given the ongoing pandemic, it shapes whether or not I'm able to attend events in the the absence of COVID mitigations or other COVID cautions.
Speaker 2:However, the attitudinal barriers that I faced and the ways that I experienced the world as a consequence of psychosocial disabilities, so, as you mentioned, like anxiety and borderline personality disorder, are really different, I think, because you know, as everyone who listens to this podcast would be familiar and would understand, those are invisible conditions, and so I'm trying to convey to the world what's going on inside my mind and inside my body and, unlike something that like cerebral palsy that has a manifestation of me using a wheelchair or my muscles shaking, my anxiety and my bpd is very much an internal process and it manifests sometimes in behaviors that it can be really difficult for non-disabled people and sometimes other disabled people to understand.
Speaker 2:So the way that those things manifest and impact my day-to-day life look a lot more like like relationally struggling to articulate what's happening for me. But then when I do attempt to articulate those things, being faced with with ableism, being faced with discrimination, um, being faced with comments like oh you know, I can't even tell you're anxious, or, worst of all, be embellinating comments of like it's not that bad or just get over it. I think part of the difficulty and what makes the mental health challenges so much more disabling for me is the fact that not only am I dealing with the conditions themselves, I'm also dealing with other people's reactions to them and reactions to me, and I'm always trying to constantly justify not only what I'm feeling but what I need as a response.
Speaker 1:Excellent point. I think that invalidation plays a huge role. So, based on, obviously, those experiences that you have and what we just discussed there, what are some of the most common misconceptions you encounter about your disabilities and how do those misconceptions in particular affect your day-to-day life?
Speaker 2:Yeah, I think, again, the misconceptions are very different whether we're talking about the physical disability or the mental health challenges.
Speaker 2:One of the biggest misconceptions for me about the cerebral palsy is the fatigue that comes with it.
Speaker 2:I think similarly, because you can see when my muscles are spasming, you can see when I'm struggling to walk, but the consequence of that, the fact that on any given task I'm exceeding or using four to five pounds the amount of energy as a non-disabled person you can't see that, but I feel it and so, again, I the one of the biggest misconceptions that I face there is just the, the fact that I almost have the same 24 hours as a non-disabled person, um, and, and I really don't, and I think that's a misconception not only that is held by the rest of the world, but it's a misconception that I held of myself for a really long time before I kind of did that education and that learning to understand what cerebral palsy means for me.
Speaker 2:On the other hand, the misconceptions pertaining to my mental health challenges are well, the first one, I think, for me in terms of borderline personality disorder is one that I've written about a lot and I still journal about a lot and probably will be for the rest of my life, which is the notion of those of us with BPD being manipulative when we are experiencing really intense emotions and when we're maybe behaving in a way that is us or me trying to manage those emotions in the most effective way possible. That's not an intention, like the intention of that behavior is not to manipulate that. That intention, the intention of that behavior and what I'm trying to do when I'm in the midst of an emotional crisis is to cope with the tools that I have in the moment. And again it's kind of like not only am I dealing then with the the pre-existing emotional crisis and then also dealing with the hurt of people that I've trusted and loved, having a fundamental misunderstanding of who I am and the way that I'm behaving.
Speaker 1:There's such a good point. I really appreciate also what you said at the earlier part of answering that question, talking about how you really don't have the same 24 hours. Now, Laura, you're starting an easy read business, I think this year from my recollection. Can you tell us what easy read business I think this year from my recollection. Can you tell us what easy read is and why accessible communication is so important to someone like yourself?
Speaker 2:Absolutely. Just jumping back to the previous point, fleek, I guess something that really helped me with to reconcile that and to accept that was learning about the concept of crip time and learning that this shifting, changing understanding of time was something that I didn't hold alone. It was something that had a history within the disability community and it revolutionized the way that I thought about disability and the way that I thought about myself, because c Cryptime says that I don't have to, that we don't have to bend ourselves to meet the expectations of a non-disabled society, that instead time can be elongated and bent and changed to meet us and our bodies and our minds, and so for that reason, I'm just the biggest proponent of Cryptime ever.
Speaker 1:I love that reason.
Speaker 2:I'm just the biggest proponent of crit time ever. I love that. But, yes, I am starting an Easy Read business this year. And Easy Read for anyone who's not familiar is a form of communication that uses short sentences and definitions of complicated words alongside images to support the understanding of the text. And Easy Read simplifies complex information for the benefit of audiences who might have low literacy for a variety of reasons. So that might be because an individual is just learning English, it might be because they've got an intellectual disability, or it might be because maybe they weren't able to access education in the same way as everyone else. And, interestingly, the number of people within so-called Australia, or the percentage of people within so-called Australia who actually have low levels of literacy according to the Australian Bureau of Statistics, that percentage is actually 44% so that's almost half of the population we're talking about. It's not some minority, it's so many of us.
Speaker 2:And so for me, as an accessible communications professional, it's my goal in everything that I do to kind of bridge the the literacy divide that exists in our world, because, if you think about it, our world is structured on the idea that we can read the information that's coming at us from every single direction every day, from the, the bills that we get in the mail that tell us you know the water bills or electricity bills, to uh announcements, um, like on the on the signs at a train station or a bus station, um, all of that information, essentially the.
Speaker 2:The information that we need to function isn't in society, to navigate society in an accessible and inclusive way, isn't designed with the understanding that low literacy is more common than not, arguably so. For me, easy read and plain language are important because they are, in essence, a gateway to the world, and I feel like I wouldn't be able to call myself a disability advocate, I wouldn't be able to call myself someone who is proud to stand up for the right of marginalized people and people with disability, if I wasn't constantly championing accessible communication, if I wasn't trying to break down that enormous literary divide.
Speaker 1:Yeah, what a fantastic point and what a really eye-opening statistic that you've shared there as well, because I think the majority of people probably won't have an awareness on the statistics around literacy, particularly in this country.
Speaker 1:We do tend to think that we are pretty much on top of a lot of things, including education, but, as we all know from this community, that doesn't necessarily mean that everyone has actual access or the privilege of access to what they need. So it's fantastic that we have people like yourself out there championing for these things and, in particular, educating and bringing awareness to those statistics, but also to the solutions, and I'm super excited for your business to be out in the world, and I hope that everybody listening is thinking about Laura when they're thinking about anything, whether it's designing on their website or whatever it is. Um, check out Laura's work and make sure that you support, because we definitely need to see a big change in that area, as you've highlighted there. So, laura, when you think about the kind of world that you'd like to live in, one that's truly inclusive, truly accessible, what specific changes would make the biggest difference to you personally?
Speaker 2:Oh, I love this question.
Speaker 2:To me personally, I think we live in an ongoing pandemic.
Speaker 2:Covid-19 is not over, even though it would be really, really um to be able to live in, uh, the belief that it is um, and I'm I was going to say I'm envious of people who've chosen to live as though the pandemic is over, because but I'm not because, uh, I know that I have the privilege of knowledge and understanding of the ramifications of uh, not just a single covid infection, but multiple COVID infections.
Speaker 2:So for me, I think one of the greatest changes to the world would just be an acknowledgement of the ongoing pandemic, and not only the acknowledgement of it, but that acknowledgement actually leading to action, leading to an understanding of the importance of clean air. You know, that might be the installation of air purifiers. It might also be, if I'm interacting with a healthcare professional or an Uber driver or someone that I need to interact with in order to maintain my day-to-day life, that they will wear a mask and do so not begrudgingly, but because they understand the importance of taking care of me and people like me, but also taking care of themselves, because you don't have to be disabled to be at risk from COVID-19 or long COVID, bravo.
Speaker 1:Absolutely Bravo. I'm completely with you on that. A lot of the options that we have in terms of making the world more inclusive from that perspective are incredibly simple. Frankly, our community are probably best placed to be able to provide information on what those solutions actually are. And finally, laura, for people who want to be more inclusive but they don't really know where to start, for them, the whole concept is just too large of a thing to really think about. What's something that they could do right now to better support people with hidden or complex disabilities like yours?
Speaker 2:I love that. I think the notion of wanting to make change from personal experience can feel and be really, really daunting. So I think it is about not trying to think about it as this huge mountain that you're going to climb, but to think about it in terms of small actions, tangible actions that can make a real difference. It might be something as simple as if you've got a friend and you know that they've got a disability or a chronic illness, check in with them if you know what their access needs are. A chronic illness check in with them if you know what their access needs are. Um, try to accommodate that if you invite them somewhere, um.
Speaker 2:So an example for me is that so many of my friends are so understanding of my access needs, um of the fact that there is an ongoing pandemic, so if they invite me somewhere, they will say hey, laura, would you like to go to x, y place, x, y, z place, it's wheelchair accessible and I can book us a table outdoors. Um. It's that simple, um, and it's like that is a, like a short message, but what it says to me is that I matter. What it says to me is that my presence in this person's life is important, um, and that my access needs aren't a burden, they're my right, and that this person is committed to upholding my right and anyone who's listening can and I hope will take that action to show other people in their lives that those people's access needs matter, that those people's access needs are not a burden but are in fact they're right.
Speaker 1:Beautifully, beautifully said. Again, Laura, that's just been just brilliant. You brought up some really great points, so really poignant solutions as well, which I greatly appreciate. So thank you for spending some time with us today and sharing you know, your experiences, your insight, but also the brilliant awareness and suggestions that you have. We greatly appreciate it.
Speaker 2:Thank you so much. It's been a pleasure.
Speaker 1:Thank you for joining us for another Sunflower Conversation. Hdsunflowercom forward slash au on Facebook at Hidden Disabilities ANZ or on Instagram Hidden Disabilities underscore ANZ T Sunflower Bloom.