“My brain is having to put in a lot of coping mechanisms to be able to just be in that space or in that place.”
Isabella (Bell) identifies as a neurodivergent (autistic & ADHD) Greek (CALD) queer/asexual empath with binge eating disorder (BED), learning and psychosocial (permanent & ongoing anxiety & depression) disabilities. Bell chats about challenges caused by general misunderstandings, and how the Sunflower can help. Bell is a passionate advocate and has a blog well worth subscribing to, visit divergentbell
Mental Health: If you’re going through a hard time right now, the Beyond Blue Support Service is available 24/7 for brief counselling. Call a counsellor on 1300 22 4636 or chat to a counsellor online here www.beyondblue.org.au
The Sunflower Conversations is a Podcast where we explore the experiences of people living with hidden disabilities and what the Sunflower means to them. It’s a space to share your experience and to empower and encourage more people to support invisible disabilities.
A big thank you to Peta Hooke for conducting the interviews with compassion and respect and to Sandee Facy for the beautiful Sunflower song. You can follow Peta's I can't stand podcast here and Sandee Facy's music here.
If you want to share your experience, get in touch with us by emailing us here.
Transcript:
Peta [00:00:00] I would like to acknowledge the traditional custodians of land and waters of which this podcast is recorded, especially to those with a disability themselves. Hello and welcome to Sunflower Conversations, a podcast where we explore the experiences of people with hidden disabilities and what the sunflower means to them. My name is Peta Hooke. I'm your host. I have cerebral palsy as well as other non visible disabilities. Every episode we're going to be chatting with a different sunflower wearer to understand what it's like for them to identify as somebody with a hidden disability and how people can best support them in different circumstances. Let's add a little bit of sunflower sunshine to your day and get started.
Bell [00:01:04] Hi, I'm Belle and I use she her pronouns. I'm proudly and comfortably a neurodivergent, autistic, ADHD, Greek queer, asexual, empath with binge eating disorder, psychosexual, and learning disabilities. I passionately work and volunteer in the intersection of fields of youth, disability and mental health communities, where I focus on all three levels of systemic, statewide and local advocacy. And I also run my own online blog called Divergent Bell.
Peta [00:01:37] You're a very busy person, Belle. And, you're a great advocate for the disability community. I'm so excited to talk to you today. So, first and foremost, what do you think people most misunderstand about your disabilities?
Bell [00:01:52] The first, I've got a couple of different misunderstandings, but the first one that I thought of when I was thinking about this question was, the key thing and the stereotype of autism, which is, you know, people with autism are really smart and then don't have social skills. Only one of those things is true for me. I got lacking social skills, and I also, I lucked out and equally got the lacking learning skills. I'm not like, a genius level smart. I'm just your average potato. It's one of the harder things to explain to people when I tell them that I'm autistic and have ADHD, because immediately most people's minds go to the stereotype, which is, you know, Sheldon Cooper, the good doctor, those kinds of TV representations of autism, ADHD. And then the next, misunderstanding I've really often come across is that I tell people I'm autistic and ADHD and they're like, oh, but that's only like only children have that. And then I have to explain to them, no, autistic children grow into autistic adults. Autism doesn't have a cure. Things don't go away as you age. I come from a, really big cultural background of being Greek. So I have a bunch of extended family, like godparents and whatnot. So then to explain to them that I had been diagnosed with autism and that I was really happy and excited about it, they saw it as a really bad thing, and they were like, really confused and stuff. So it was definitely a really big learning curve for me when I got diagnosed, to explain to them why I was happy and to explain that, you know, it's why I've struggled my entire life because, they weren't able to pick up that one. I was a female, and two, that my autism didn't present in a very stereotypical way. And that's thusly why I got, like, called out through school as a villain when it came to social situations.
Peta [00:03:54] Apart from attitudinal barriers that you face, and misunderstandings about your disability, what would you say are the main challenge challenges that you face every day?
Bell [00:04:05] So one of the really big ones is sensory challenges. But being able to leave my house because the world is not made for those who are, sensory sensitive, so, like loud noises, bright lights, bad smells, weird fabrics and stuff like clothes that you wear. Food sensitive with what I might eat. My brain is having to put in a lot of coping mechanisms to be able to just be in that space or in that place.
Peta [00:04:36] So when did you start wearing the sunflower, and how do you feel when someone asks you whether you need assistance?
Bell [00:04:43] I started wearing the sunflower. I think it was a year after I got diagnosed. When I discovered the lanyard, I was really excited because I was like, yay! There's a symbol to like, represent. Like having a hidden and invisible disability. I was really happy, especially the fact that it was in Australia. So I know it came out of the UK, and I'm actually really bummed that we don't have the full of like selection of merchandise in Australia that they have in the UK. They've got this, seatbelt sleeve, that stops the seatbelt from, like, rubbing on you. And it's covered in the sunflower logo. So I would love to have one that I can wear when I'm driving. So it can present that I have a hidden disability because, like, if I get pulled over by the police, I'm not gonna be wearing my lanyard while I drive. Like, it'll be in my backpack. It's not exactly as handy.
Peta [00:05:38] Yeah. Great point. I hadn't thought about that. For those who are listening and might be a little bit less aware with autism and ADHD, and they see you wearing your lanyard. How would you like them to approach you and help you?
Bell [00:05:55] I would like people to approach me, in a very like, chill, calm way as I would approach any other person and just ask me, you know, do you need help? Just have a conversation with me. Asking like, what assistance I need and then listening to me when I'm saying, or I need this assistance or that assistance or, you know, I don't need any assistance at all. But I appreciate you noticing that I'm wearing the sunflower lanyard, because it makes me feel really safe and comfortable when someone comes up to me because they've seen that I'm wearing the lanyard out in public.
Peta [00:06:31] And if you had an exceptional experience wearing the lanyard where someone's come up to you and they've just totally understood autism and ADHD and how to help you, and what environment was that in?
Bell [00:06:45] It was a really hot day, like 35 degrees. And I was just on my way to go to an end of year celebration for work. And I get on the tram, and the first thing that I do when I get on the tram is that I put my backpack next to me on the seat, so somebody else doesn't sit next to me, and it just felt so good to do that while wearing the lanyard, because it gave me power to be able to advocate for myself and to be like, hey, it's a really hot day to day. I'm not coping because it's really hot. There's also a lot of people around because it's the end of the year, it's Christmas and everyone's doing their Christmas shopping. I just need space on a day like today. Yeah, it was really nice to be able to, you know, have that empowering confidence thanks to the sunflower. And that's gives me the power to be also to advocate and say, hey, you know, you've got to listen to me. You can't just insist to sit down just because you need to sit down, or because the space to sit down, like my accessibility comes first. So I wore recently when I went to Pink's concert at Marvel Stadium. Even though Marvel Stadium, as we all heard from last year with the Harry Styles concert, doesn't still recognise the sunflower, but I wore it anyway because I was more than happy to take the time and energy to educate the staff members if there was any pushback, which luckily there wasn't when I went to access the sensory room. I was pleasantly surprised that I wasn't asked for a diagnosis and all of this other stuff that people were asked last time. But wherever I definitely know the sunflower is recognised, I will wear it because it just helps me quite a bit. If I am in not a great mindset and I'm still going out. All round, I would say it was mostly accessible for me, but I prepared. I came with my own sensory stuff so I had my loop earbuds. I had, you know, tissues because I always got a runny nose. Water. I made sure that I brought a jacket in case it was cold or whatever. I wore my comfy shoes because I can't go anywhere without those. Also brought fidgets. And they're really key thing. No matter where I go, I always make sure that I've got 1 or 2 with me. Just so you know, I'm not that pulling my hair out constantly. That is one of my worst kind of stims and fidgets. Like I even for that concert, I also pre-prepared by booking parking like a month in advance. Just made it so much easier when the concept finished to just, you know, walk back to the gate, get in the elevator and get in the car and just leave. I had an amazing night. It was so cool to see her live for the first time ever, because I was a kid, when she came every other time to Melbourne and to get to see so many fans around as well.
Peta [00:09:34] And that's another episode for Sunflower Conversations. Don't forget, you can always connect with the sunflower between episodes either via our website HD sunflower.com/au via our Facebook Hidden disabilities A and Z or via Instagram hidden disabilities_ANZ. Those links will also be in the description. Thank you so much for listening. Until next time, have a lovely sunflower day.