Episode 11 - Chanelle Morris: Navigating life with 30% vision

‍

Transcript

Larissa: This podcast is recorded on the lands of the Wurundjeri people of the Kulin Nations. We pay our respects to the traditional custodians of this country and elders past and present. We extend our respects to any First Nations, Aboriginal and Torres Strait Islander people joining us today.

Welcome to today's episode of No Spoons to Give, the podcast where we explore life's ups and downs with neurodivergence, chronic illness, and disability, and we chat with the voices that make our community so wonderful. I'm Larissa, and I've also got Maddy here with me. How are you, Maddy?

Maddy: I'm doing well, coping in this heat.

Larissa: It's so warm in Melbourne at the moment. I don't know what is with the weather and the traffic, but anyway, we made it here this morning and here we are.

Maddy: We did. We're here in one piece.

Larissa: We made it.

Maddy: Do you have a recommendation for me today?

Larissa: I do, and I'm going to preface this with an apology because my recommendations are getting more rogue and broad each week.

Maddy: I love that.

Larissa: But our podcast, our rules. So this one is more specific to Melbourne, Australia, but I know that they run these events around the world. So I discovered yesterday that Melbourne Aquarium runs monthly sensory sessions where users with different sensory needs can go to the aquarium. There's less crowds, less noise, and less lighting, and you can go into the areas with the jellyfish, different beautiful sea creatures. It's only $10 as well, which is super financially accessible.

Maddy: That's so good.

Larissa: Yeah, and it's on a Saturday. I'm pretty sure they change up the days, but a Saturday is I guess great. If you work Monday to Friday. We've had some Spoony's go to similar things in their own countries. So if you do have an aquarium nearby, see if they offer this. Also, thinking of running a Spoony meetup at one of them, if anyone wanted to join. Let me know in the comments.

Maddy: That's a great idea. I would be so down.

Larissa: Yeah. Maybe we can go together.

Maddy: Yes, please.

Larissa: Have you got a recommendation for me?

Maddy: So I have a book for a recommendation today. Surprise, surprise, I know. It's called The Pretty One: On Life, Pop Culture, Disability, and Other Reasons to Fall in Love With Me by Keah Brown. It's a refreshingly honest, charming, and thought-provoking memoir made up of a series of essays that includes growing up with a disability, the intersectionality of race and disability, and finding community through pop culture.

Larissa: That sounds amazing. I'll definitely check that one out and add it to my list. I feel like you've given me so many amazing recommendations. One of my goals this year is to read more, so I need to start getting through them. That's great.

Maddy: Always happy to provide a book recommendation. You have so many fantastic, diverse recommendations. I love it.

Larissa: Thank you. I'm so excited today because we've got one of our Spoony ambassadors here, Chanelle Morris, who is a public speaker, event and workshop host, disability advocate, educator, and also a podcast host. Chanelle has grown up with 30% vision and is legally Blind in her right eye.

Maddy: Chanelle openly shares her experiences as a disabled person across her social media channels and also shares a lot of wisdom related to mindset and resilience. She is also one of our wonderful Spoony Ambassadors and we're so excited to be partnering with her. Welcome, Chanelle.

Chanelle: Thank you so much. It's so good to be here. I appreciate it. And yeah, it's nice to be in Melbourne for a change.

Larissa: Absolutely. It's so good to all be together in person as well. We finally made it.

Chanelle: Yes.

Maddy: Finally.

Chanelle: Yes.

Maddy: So Chanelle, can you tell us a little bit about yourself and also your journey that you've taken to do the work that you do now in the disability advocacy and speaking spaces?

Chanelle: Absolutely. Where to begin? So as mentioned, I've got 30% vision total and am legally Blind in my right eye. I was born with this condition they believe, and I've lived with it my whole life. And yeah, I've had many challenges growing up with disability on my path, and it's not until in the last year or two that everything changed for me with my mindset on my disability and how it was impacting me. So one of the key things that changed everything for me was I essentially went through a bit of a crisis, and I hit rock bottom and I decided that I needed to change things up and sent myself to New Zealand for a solo ski season. Now, having 30% vision, I can't read almost anything basically. So this was terrifying, but I needed to change things up. And it was in New Zealand that everything changed for me.

I was so independent. All my confidence came. If you guys knew me beforehand, I'm such a different person now. And yeah, that really showed me that all I needed was myself, whereas I've always grown up having disability, feeling like I need other people, and then all of my confidence grew from there. And then as being a speaker, I feel like confidence is a big level of that. So from New Zealand, I started to post my journey online and someone asked if I wanted to speak at their Christmas party and just share my story. So that was my first gig, I suppose. And when I got up on stage, I loved it, which is very random, and I think it's 1% of the population actually like that. But ever since being young, I always loved going up on stage and just being in the spotlight, so it makes sense.

And then from there, it just grew and more people were asking me to come to their events, and that's when I was like, "I really want to pursue this." And I've always wanted to help people, but I never knew how and having my low vision, I did want to be a paramedic or something on the front line, but I've decided that using my voice is my power. And that's also where the advocacy comes into it too. So using my voice is hopefully helping other people find theirs as well. And to be that person that I never had is my goal. So yeah.

Larissa: That's amazing. And I love that you went to New Zealand too. Skiing is so hard and it sounds like-

Chanelle: The hardest thing I've ever done.

Larissa: That's such an incredible story. Also, the only times I've ever done skiing or snowboarding, it was absolutely terrifying. Did you know how to do that before you went to New Zealand?

Chanelle: So I was a skier. My family is from New Zealand, the south island, but north, whereas Queenstown is a lot more south. So I'd never been to Queenstown before, but I've gone to a few other mountains when I was younger. And I just learnt to ski, I think because my parents thought it was probably a bit easier having two legs instead of being strapped into one thing. So I just picked that up. I just would always go slow, but it felt quite comfortable to me. And when I went on my recent trip, I for some reason decided to not only just send myself overseas, but to also just decide to do snowboarding. So don't ask me why, but I seriously was like, "Let's just turn this whole world upside down." Yeah. So I taught myself how to snowboard, and I was there for 12 weeks, so 3 months, and it took me about 5 weeks to really pick it up and become quite confident. And I just learnt in the smaller area, like the slower slopes and just took it at my own pace, which was great.

And being there for such a long time, I had the time to actually do it. Trust me, there are a lot of tears and anger and frustration, and you didn't want to know me in those first five weeks, but I finally got it. And I just realised that having low vision, a lot of people think that things are quite scary and they are. I've gone through lots of challenges, but when I'm learning something new, like snowboarding, for example, I can't see how steep the slopes are, or I can't see if there's little divots and jumps and things. So it takes that fear element out of it for me, and I just go for it. I just do it. And a lot of people, I get questions every day, "How do you do it?"

And I think it's just I don't have that fear until I'm doing it and I'm like, "Oh my God, this is a lot faster than I thought," but I just go for it because it's like when children, they don't have that fear, so they just do things. It's quite similar when I'm learning a new activity and I can't see... Same with my speaking on stage, I can't see the audience and their faces and things. So if they don't like it, I don't know. So I'm just confident and I go for it. And yeah, it's like having disability, I get nervous and have fears around things, but then also not knowing how fearful it is, it helps me in a lot of ways.

Larissa: Interesting. I never thought of it like that.

Chanelle: Yes.

Maddy: Yeah. Me neither.

Larissa: Super interesting. I want to go back to what it was growing up for you a little bit. Can you talk a little bit about what school was like for you? And I guess what was your relationship like with your peers? Did you have any challenges throughout school?

Chanelle: Yeah, many. So I always say through my education and employment are the biggest challenges I've ever faced with my disability. At school, there was some incidents that I went through that I think then shaped me and a lot of my negative beliefs now with my disability. And in particular, I think about the age of 10, and I share this in my speeches and I love swimming. And I had a coach and I would do swimming lessons after school. And at this school swimming carnival, I was so excited for this day I'd been practising and everything and mum was there and the whole school was there in the grandstands, you can just picture it.

And we were all lined up on the diving blocks and getting ready to go, the adrenaline was pumping, and then all of a sudden the coach stops the race and he grabs me off the diving block and walks me halfway down the pool and tells me to jump in there because it makes the race fair. And that just ruined my confidence. It took my autonomy away. It showed me that I was not as good as others. And because we all develop these beliefs, and that is one of mine is, "I'm not as good as others because I have this and that," and this person showed me that that was true on that day. So being so young as well, our brains are sponges, so we take everything in around us. And I think for me, that was the start of my journey with embarrassment with disability. And I ran to the bathroom, and I never competed again.

So it's things like that that started. And then there were other events, like I went to a big hall, it was at school, but it was a big fair or something was happening and I couldn't find my friends. So I asked one of the teachers and instead of supporting me, they got up on the stage and through the PA system were like, "Chanelle can't find such and such, and can you please come to this stage?" And I had kids asking me for weeks what was wrong with me because they were like, "Why did you need..." It was that. So that was in my early stages of school.

And then I think from that I just had this lens of I can't be different, because I think in those moments it felt so awful that, and obviously they stuck with me to this day and I'm 25 now. So I think, yeah, I then went throughout school of no one can know. So I never spoke of my condition. Teachers would know just for safety and things like that, but if the students knew I would have a meltdown. I never spoke about it. I couldn't talk about it without crying and having that real reaction to it until Year 11 and 12, that got a bit better for me because I think I started to relax a bit more and maybe more of my personality came through by then.

And I had some really good friends and they would often read me the board, but instead of now where I'm more confident, I'd sit in the front row, I'm like, "I need help, I deserve it." I would be like, "No, I can't." So I'd sit in the back row with all my friends, but then I couldn't read what was going on and I'd be so anxious. The teacher might ask me a question and I couldn't even read it. So I'd ask my friend to read what it said, but again, if she read too loud, I'd be like, "Don't worry." And I just would sit there and have no idea. I don't even know how I passed to be honest, but it was that type of thing through school. And I think a lot of it comes back to those early times.

And I was just so focused on hiding my disability because I didn't want to feel that again than owning it. So now often I think I'm like, "If I went back now, it'd be such a different experience." But yeah, I did have a good network of friends, but it was just, yeah. And then in Year 12 as well, we got a new principal and that did change everything for me. And I actually had meetings with him and he put blinds in classrooms for me. He painted all the stairs. And that really did change my experience too. I think I got a lot more confident and comfortable. So yeah, it was an interesting journey of education.

Larissa: Thank you so much for sharing that. High school can be such a traumatic period of time and yeah, your peers can be so cruel. I can't even imagine what that would've felt like. Yeah. Thank you for sharing that.

Maddy: Yeah. It makes such a difference having teachers and support who understand and listen to you as well, even if they don't understand initially, just being able to listen.

Chanelle: Of course. Yeah. I think it makes or breaks the experience, like in mine, how they were when I was younger, they just thought that they were helping but just did the opposite to then when I was in grade 11 and 12, when that new principal came in and he did all those things. I think that is really what changed it. And I felt comfortable. So I would say to the teachers, "Look, I can't see when you write in green, can you please avoid it?" And whereas in the past, I'd just sit there and go, "Oh my God, I can't see it." So I think you're right. When someone does come in and they just want to listen and they want to offer support, it just creates that comfortable, supportive, safe space, and that's what changes things.

Maddy: Yeah, absolutely. Can make such a difference.

Chanelle: Yes.

Maddy: Yeah. So you've spoken a little bit before about how you found out as a 16-year-old that you wouldn't be able to drive a car or live independently. Do you mind sharing about what it was like to receive this news and what happened after that?

Chanelle: Yes. So I think I was older in my grade than all of my friends. So my family and I knew that this was going to come this day. But I think me with just being quite hopeful as a person in general, I was always like, "Look, I can do everything. I might be able to drive." But I think my parents knew maybe not. So yeah, they were trying to prep me for this day just saying, "If you're not, you're still okay."

And then the day came and it was just time to get my learner's licence. And I went to my specialist appointment and I had to do this test I'd never done before. It was like to test all your peripherals and everything, and you put your head in this box and you click a buzz every time you see a red dot. My dad was sitting behind me, he came in with me and I was so excited and I was clicking, but it was at a very slow pace. It was every couple seconds and dad behind me, I could feel him fidgeting. I could just feel someone there. And yeah, I just knew that I was failing the test. I could just feel it. And then after, I'm going to get upset... After. Sorry.

Maddy: No, that's okay. Take your time.

Chanelle: Clearly still a pain point.

Larissa: We don't have to talk about it as well if you don't want it.

Chanelle: No, it's fine. It's good because it shows people that you don't shove your emotions down because they... Yeah. Okay. All right. I'm good.

Larissa: I always cry when people cry. Sorry. Keep going.

Chanelle: Okay. All right. We're back. So at the end of the test, I said to my dad, "How did I go?" And I just knew that I had failed that, and I just felt like my world had crumbled. And the way that I had placed a lot of my value on it, which we do with a lot of things, it just sent me spiralling a bit. And I remember leaving the specialist that day, and I think the way that my family were coping as well, it was more like, they're there to support me, but also, let's move on now. Look, you can do so much more and that. So I shoved a lot of it down, those feelings, as you can tell, if you don't feel it, stays.

So yeah, it was a really difficult time for me and especially when going back to school and obviously not being able to drive, and then it was the feelings of the failure and it really set me apart from others because as I said, growing up at school, I tried to hide it as much as I could, and I got pretty good at it. I think I mastered, I just did well. Whereas this was very clear, you are different. There is a very clear line between you and everyone else. So that was really hard to navigate, and it was put in my face a lot more than of like, "Wow. I can't hide this anymore." Which in hindsight is a good thing. I've finally come out and I'm owning my disability. So yeah, it was really hard.

And then after everyone started to get their licences, because I was the first one. And that was also difficult to be happy for people, but also not happy at the same time. Yeah. It was exciting. I got to go in the car with friends and that type of thing, go to Maccas. But yeah, it was bittersweet almost. And it was just about trying to not put myself down during these times because it is nothing I have control over. And yeah, it was a very big learning experience. And then again, when my sister, she's about four years younger than me, when she got hers, that sent me spiralling again because I was 20 and again, it was like someone so young, my little sister who I'm supposed to be the bigger one in this situation is achieving something that I can't. And she was driving me around and yeah, I didn't have much independence and I just felt like a child almost. So yeah, it was very difficult to overcome and is probably the biggest pain point that I have, as you can tell.

But now it's quite different where it's like I save on money, I save petrol. So there's so many benefits to it. I don't have the risk of driving. And yeah, there's just so many things that now that I look at the positives in it. Every now and then I'll still have my down days of I wish, or if someone doesn't turn up on time to take me to an appointment, it's like if I drove, I might be there on time. It's just little things like that that send me a little bit.

But I'm way better at bringing myself back now and again, it's like I have no control over that, but I have control over my reaction. And now it's about calming myself down when I'm triggered and just really looking at the positives if I can. And again, just letting myself feel it though, because you need to feel it to heal it. And that's a huge lesson that I've learned during that. Yeah. Things still come up, but I manage it a lot better now and it makes me who I am and I wouldn't want it any other way. So it's just trying to find those positives where you can.

Larissa: I love that.

Maddy: Thank you you so much for sharing.

Chanelle: Sorry.

Maddy: Never be sorry for showing your emotions, especially not here. This is a safe space.

Larissa: Absolutely. And I love your mindset around everything as well. Yeah. To be able to reframe an experience like that to not paying for petrol, you have such a strong mind. And as someone who accidentally let their licence lapse two days ago,

Chanelle: Oh my gosh.

Larissa: Yes. But no, thank you for sharing that. I want to fast-forward to now. So you've done some solo travel. You're doing some amazing speaking and advocacy work. You're hosting walking groups. I even saw that you've signed up for a half-marathon.

Chanelle: Yes.

Maddy: Amazing.

Larissa: Still amazing. Your life looks so full of things that bring you joy. What was the pivotal moment for you and how did you slowly start to shift your outlook on life?

Chanelle: So it'll go back to the New Zealand trip. Yeah. It's about two years ago now, so about the age of 23. And I had these negative beliefs as I was touched on earlier, and it was like, "I am not good enough and I can't do these things." So having Low Vision, I couldn't go to the grocery store because I can't read the items and find them. And then same with clothes shopping. I can't read the sizing and the pricing and meeting people in public was terrifying for me. Just what if I waved at the wrong person? And all of it came down against that embarrassment wound of if I waved at the wrong person, how embarrassing or if I can't read something, oh my god, something's wrong with me.

So they started to seriously suffocate me, and I actually lost one of my relationships from that because I just became housebound. I was like, "I can't leave." It just became so much for me. So losing that relationship, which was like a lifeline for me, seriously, sent me to rock bottom. And then I also had to leave my job, which I loved because I just became all too much. I was in fight or flight basically. So that is why I ended up going to New Zealand. I just needed a new space. I just needed a fresh start and to jolt the system literally. So that is why I made that decision to go over there.

And it was over there, that I realised that all those beliefs that I had and all those things I just mentioned that were holding me back, not going grocery shopping, not doing all those stuff. New Zealand, I had no choice but to do it all. So I had to catch the bus, work out that system, go to the grocery store. I still had barriers. I still couldn't read them, but I would FaceTime my mom, or I would ask people to help me and it's where my confidence grew because I actually started asking for help because I had to. I had to eat, so I had to ask for help. So that's where I realised that it's actually safe to ask for help, and it's a right almost where I deserve to get the help that I need. And that just showed me from just every day doing these things like learning to snowball, learning where the restaurants were reading menus. I just had to do everything instead of like, "No, I can't, my eyes." It was like I have to, and it showed me that I can.

So that is what changed everything for me. That's where the confidence came. That's where I just found who I am now. I feel like I'm actually myself. I'm not this hidden version of me anymore. And it all came because every single day there was evidence stacking up so high of, "I did this. I did this. I actually can do all these things." And that's where everything changed for me. And then since then, my mindset has never gone back. It's like your comfort zone. So once you expand it, which is what I was doing every day, it's like a plastic bag, it will never shrink to that original size again. It just won't. So now since then, it's like I will never go back to that way of thinking again. And I think that's why my mindset is so great now, and that's just my way forward now. I never will go back to that thinking because I've expanded it and it just won't go back to that size again.

So yeah, it was an incredible journey and I learned so much. And trust me, I had my moments of I can. I was stuck between self-doubt and encouragement, and I had to talk to myself during every activity, like strapping into my snowboard boot or on the bus being like, "You've got this. You can do it." And then once I did do it, it showed me that I can do much harder things. And there's actually science behind it, and there's a podcast episode that I had listened to and on the plane over actually, and it just explained to me that literally we have a part in our brain and the more we push ourselves, it actually grows. We grow a part of our brain and acts like a muscle. And the more we use it, the more we get used to that.

And then yeah, we can do much harder things. And that's exactly what's happened to me because looking back now, back then looking at where I am now, I would've been like, "No, absolutely not. There's no way. That is just..." So yeah, now it's exciting, like what else can I overcome? And I love challenging myself, even flying down here solo, terrified of flying, but I do it and it's like, what next? I could go to Canada, I don't know. Calm down. Yeah. And that changed everything. New Zealand just shock to the system.

Maddy: That's fantastic. It's so amazing when you challenge yourself, how you can really overcome so much and so much about mindset. Yeah. You really got me inspired to tackle some things that I've been scared of.

Larissa: That's so incredible. And I also love that, was it the plastic bag analogy? Yeah. I feel like I've heard that before and you just reminded me of it. And yeah, that podcast that you touched on about that part in the brain that grows when you do hard things, yeah, I need to go back and listen to that because I love listening to all of those things. We might take a quick break and then when we come back, I want to chat to you about dating and friendship with a disability.

Chanelle: Yes, that sounds great.

Larissa: Hey, Maddy. I want to talk about something that's been a total game changer for the neurodivergent, chronically ill, and disabled community.

Maddy: You mean Spoony?

Larissa: I do. But today, I want to focus on one of their standout features, the journal for symptom tracking, whether you're managing flare-ups, trying to spot patterns or just need a space to unload your thoughts, Spoony's journal is a tool you didn't know you needed.

Maddy: And it's so easy to use. You can track how you're feeling day-to-day, jot down notes about your symptoms and even tag triggers or treatments to see what's working and what's not. Over time, it helps you make sense of what might otherwise feel totally random.

Larissa: Plus, you don't have to worry about ever feeling judged. It's private, secure, and designed with empathy in mind. It's like having a health diary that gets you.

Maddy: Honestly, it's perfect if you're looking to take charge of your health while staying in tune with yourself.

Larissa: So if you are ready to track your symptoms, find patterns, and gain some real insight into your health, download Spoony now and check out their journal feature. It's a little extra support in your pocket when you need it most.

Maddy: Spoony, it's more than just an app. It's your safe, stigma-free space for friends, support, and now powerful tools like symptom tracking.

Larissa: You can download it in the app store or Google Play and try it for free today.

Maddy: So you've shared a little bit online about some of the challenges that you've faced with friendship and dating with a disability. What are some of those challenges, if you feel like sharing, and can you share any of those stories with us?

Chanelle: Absolutely. So I think that, as I said at school, we'll talk about friendships first. I had some really good friends around me and I guess, I was hiding a part of myself, so they might not have been so authentically true to me. But at the time, it was a great group of friends. And at school, I think a lot of the time we just try and click to people just so that social isolation and thing like that. So it was good. I did have a few friends and as I said, they would help me read in class and stuff like that, which was great. As I got older, just like everyone, we lose friendships and we make new ones. That was happening.

However, I must say, and it even happens now, if someone comes in and out of my life, I do go into a little bit of a spiral because I think that it's something to do with me and that type of thing. And I do have to really bring myself back to, it's not because you have low vision, it's because it's just life and it happens to all of us. And that's been a big thing recently that I've had to go and just realise because I can get quite down. And for some reason, I think it's because obviously I've grown up with this disability. So anything that happens that's a little bit negative in my life, the first thing I think about is because of my eyes, it's because of this, but it's about I guess reframing and bringing myself back to the reality of the situation and trying to balance my emotions with my logic. And it's like this actually happens to everyone.

So I have navigated through that and have some good friendships. I did really struggle though friendship wise when I left school and everyone went different ways, and I had people go to Brisbane and different states for uni and everything, and it's terrifying trying to make new friends, let alone adding a disability in there as well. So I didn't know where to go, what to do. I volunteered for a bit and made some friends through that, which was good. But I had a lot of issues with employment, and I didn't work in just a traditional office space, so it was hard to make friends. And then I was nervous to go to gym classes of the barriers there with seeing the weights or if machines are free and classes, what if we do something that I can't do, catching a ball for example, or just something like that. So yeah, I had a lot of anxiety around it.

And that's when I did hit that rock bottom as well, because I didn't have anyone around me except for my one relationship. And when that ended as well, it was just a whole spile. But since then, I think with the confidence that it really helps me to go out there now and I will just talk to anyone about anything. So that's been a lot better. And in New Zealand, I was forced to make friends because I was for three months, I was like, "I can't just sit here and I'm here to challenge myself." So that was really helpful.

And then once I started even just making one friend, I was like, "Oh my god, I can make more." And I've brought all of that back now home with me. And same thing, as you said, I host weekly walks and just meeting people like that. So that's been really good and really helpful. And obviously coming across Spoony and meeting people online as well that then can, if you're in the same era, you can meet and it's so helpful. So that's been really good.

But going back to when it was hard with my friends as well as when I couldn't drive, I would have my friends offer to drive me, and this is something I still do struggle with, and it's that almost like a burden type feeling. And they'll offer to pick me up, but I always feel like I need to pay them. I need to do something because... If it was the other way around, I would absolutely pick all my friends, that's fine. But for some reason when it's on them, I feel really bad and almost guilty that I'm like, "These people are coming out of their way to pick me up." So I struggled with that for a long time. I paid a lot of my friends and bought them lunches and probably a lot more than petrol would cost, but I just felt like I had to do this for them. So that was quite difficult as well, navigating that and then people that would be happy to accept all the things that I was offering. Yeah. And it was just a bit hard to navigate that.

And then dating with a disability as well, it's similar in the sense of feeling like a burden again, or yeah, just like when I was dating people, it's them having to pick me up from places. So if people, for example, I was asking them to pick me up from somewhere or if they could drop me off, and if they had a little reaction that was a bit like, "Okay. Or do I have to," I would take it so personally and I would just shut down and be like, "Don't worry about it. It's all good." And I would spiral again because I just felt like I was too much. I was a burden when really they were just probably having a busy day. And they were like, "Yeah, okay. Give me five," which is such a normal reaction, but I just was taking it personally.

So I struggled to navigate that because I also would get very triggered and I would snap or I would shut down, and then that would cause friction in relationships and friendships. So it's been very difficult to navigate. But again, the apps, it's quite helpful with Spoony and just being able to meet and talk about this stuff online and then hopefully meet up in person. Because again, as I do share on my socials from those experiences that I've had, I am nervous to date and I think it's such a nerve wracking thing regardless. And then adding disability, it's just another layer.

So yeah, it's like what goes through my head now when I am dating because I'm back in the dating game again, and it's like, "Where do I begin?" It's worrying about spotting that person in public, which is huge for me. Again, that embarrassment wound. And it's like, "What if I go to the wrong person? What if they think something's wrong with me?" Then it's actually at the date doing the activity, "Am I going to face barriers? What if I can't see this and that? When do I disclose to this person?" And that is the biggest thing that I find, it's like if I'm talking to them on an app or something, "Do I tell them then?" But then they don't have context and I feel like people need to meet me. And there's this fear around disability, which is ridiculous.

So I just think that, yeah, it's just when do you disclose? And then when you're in person, when do you ring it up? You sit down, so by the way. What is it? And then you're waiting for their reaction. And again, if they're a little bit negative, it's that spiral. It's taking it personally. So it's a cycle. But what I've realised recently, and a lot of people online have helped me as well through this journey and it's if someone has a negative reaction, that's on them, it's nothing to do with you. That is my biggest point for people to know and hear because it's so true. We do take things personally and we spiral, and it's like that's their reaction that they can have, but they're not our people.

And why if I feel like I need to hide this from this person on my date, they're not for me because am I supposed to spend my life hiding it from them? Actually, I like dating with disability now because it's like, I'm going to know about this person in five minutes and I'm going to know if they are worth going on another date or not. It's actually good instead of going on five dates and being like, it's like right then and there, how they react. It's like, "Okay. Yeah. This could be something, or no, you're not for me." So I do actually think it's quite good.

And then also it's letting that person be curious and have questions we all do, but just not overstepping your boundaries and stuff like that. So it's an interesting space to navigate. I've had some experiences that have made me feel a little bit like a burden, but now knowing that it's not to do with me, that's kind of relieved me and I taken a weight off my shoulder and now it's actually fun and exciting to date. So yeah.

Maddy: That's so exciting. I love how you've reframed that as you can now see the person for who they are when they have a response to disclosing that. And I also struggle with disclosing and dating as well. I'm back in the dating game, and it's tough.

Chanelle: It's scary. Yeah, it's scary. But then again, it comes back to that comfort zone thing, and it's like every time we go on a date, we are pushing ourselves out of our comfort zone, growing that part of our brain to do much scarier things. And I think it teaches us a lot about us and what we want as well and people, and it's like, "Yeah, that's probably an ick or whatever," and it's quite good. So yeah, reframing is the key.

Larissa: Yeah. That's so interesting. I want to ask you about the online disabled community. How has this community helped you on your journey, and how do you think online communities like Spoony will help the disability community?

Chanelle: I think to start with, social isolation is massive. So for Spoony, I just think the app is incredible because I've not known any other platform that's like it. And essentially, it's like a safe space for you to post a status or post how you're feeling and not have people hate on you. If it's like Facebook or something, for example, it's like even in the local community pages, I don't know if you've seen any of them, but someone will post something and the comments are just awful and tears people down. So from my experience with Spoony and a lot of my followers experience with Spoony, it's a safe space which we need. And because without a safe space, you're not going to feel like you can share and open up and actually start healing our wounds that we have or connecting with people in an authentic.

So I do feel like Spoony is the way forward to help combat social isolation. It's a step in the right direction, and I think that everyone feels it at some point in their life of feeling isolated and even alienated. And I think that this is a great way to bring people together because it is safe. And also people might not have the exact same condition as you or experiences, but they can understand on a different type of level of even just how I said, dating is terrifying and how you agree. And it's just that type of thing where, yeah, you can have mutual understanding of things, and I think that that is where Spoony can provide that. So that's why I really love the app, and I'm very happy to be an ambassador for it because it just aligns perfectly.

So yeah, I think that is great. As well as the community that I've even built on TikTok or on social media, again, it's that safe space that I try and provide to people, even in my comment section on my videos and sharing what life is like with disability, because 90% of change is awareness. So how do we expect anything to change unless we are spreading awareness? That's where the advocacy comes in for me. So that is why I post videos on social media because it's the quickest way to get in front of people and show them next time maybe I'll look at the lighting in my cafe because a lot of people can't access it, or make sure the elevator is actually working and things like that.

So that is my main goal is to spread awareness. But in that, I'm finding that the community I've built in the comment section is incredible and people are telling me their stories. I get messages every day of their stories and how they relate to parts of my video, not the same condition, but that doesn't matter. It's still not being able to access this or... I'm just bringing light and awareness to it. My vulnerability is showing people and helping them to also be vulnerable. And yeah, even people that don't have disability have been commenting, saying, "I'm so glad I now know about this. I had no idea before."

I couldn't catch a bus recently because I can't read the bus numbers. And I had a lot of people without disability saying, "I would never have thought about this." So it's great. And then I think people are seeing these comments as well, and it's really helping us connect with one another, but also it's connecting with people that also don't have disability that want to learn about it and want to be included. And I think the way forward is the spreading awareness and having this community is what we need to not feel alone because the amount of times I felt alone growing up, especially hiding my disability, I wouldn't wish that on anyone.

So to have a community, and if I had this when I was younger, my experience might've been a lot different. So I want to be that person that I never had. And same with Spoony. Having Spoony is that platform that I never had. So now I want everyone to know about it because it helps people connect. It helps people not feel alone. Because when you are going through something and you feel like you are the only one going through it, there is no worse feeling. So I think Spoony and online social media can help so much.

Larissa: I love that so much. You're building such a beautiful community, not just in your own page, but also bringing people to Spoony and your message is just so powerful. You're doing such amazing work spreading awareness, and we're so excited to be partnering with you on Spoony. If people want to learn more about you, Chanelle, where can they find you?

Chanelle: So I am on TikTok mainly is my platform. I'm on Instagram as well, and it's just my name @ChanelleMorriss with two S's, I think maybe they'll be in the show notes. So on social media really. And I am getting into YouTube as well, that space. And then I've got a website as well with a lot of my speaking and videos and things like that on there and events and stuff like that that are coming up for me. Yeah. But definitely TikTok is the main one where I do share everyday life with disability and navigating the challenges, but also talking about the wins and how we can reframe things and yeah, all about mindset and everything. Yeah.

Maddy: Thank you so much for speaking with us, Chanelle. It has been so wonderful to meet you and talk with you. I think that's a great spot to wrap up on. Thank you so much for everything.

Chanelle: Thank you so much for having me, and for just introducing Spoony to me as well. I think when I saw you post on one of my... I put a post out there saying, "What can help?," and you commented Spoony. I was like, "This is incredible." So it's so good to be here and meet you guys as well.

Larissa: Thank you so much.

Maddy: Thank you.

Larissa: This podcast is brought to you by Spoony, a safe space for neurodivergent, chronically ill, and disabled people to make friends and find support. Spoony is the world's first social app designed with accessibility at its core. If you liked this episode, it would mean the absolute world to ask if you could hit subscribe or share it with a friend. If you'd like to join our Spoony community, you can download the app via the App Store or Google Play. And if you'd like to keep up to date with us on social media, you can follow us by the links in the show notes.