Ep 33: SMA & Advocacy

Welcome to a deeply moving and enlightening episode of our podcast, where we shine a spotlight on "The Importance of Spinal Muscular Atrophy Advocacy" and the transformative power of social media in advocacy efforts. In this remarkable conversation, we are joined by four extraordinary individuals - Portia, Eden, Hamany, and Maxwell - who are helping to drive change in the world of Spinal Muscular Atrophy (SMA) advocacy.
Our guests share their heartfelt stories and reveal why they are so passionately dedicated to this vital advocacy cause. Through their voices, we explore the profound impact SMA has on the lives of individuals and their families, igniting the flames of their advocacy journey.
But this episode is not just about the challenges they face; it's a celebration of their resilience and their unwavering commitment to making a difference. We dive into the diverse mediums they utilize, from heartfelt messages to the simple act of sharing posts, and how these seemingly small actions have a ripple effect that reaches far and wide.
Join us as we uncover the inspiring goals they're striving to achieve within the SMA community and beyond. It's a testament to the fact that you don't need to be a loud and proud voice on the front lines to contribute to a cause. Every message, every share, every act of support matters.
This episode is a call to action, an invitation to be part of something bigger than ourselves, and a reminder that even the quietest voices can make the most significant impact. Tune in now and be inspired by these remarkable advocates who are changing lives through their dedication and the power of social media.

#Advocacy #QuietHeroes #InspiringStories #livingWithSMA

THIS PODCAST IS NOT JUST FOR PEOPLE WITH SMA This content is not solely for the SMA Community. We hope this discussion will be helpful to everyone. ❤️ 
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Living With SMA disclaimer: The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or its employees. All opinions expressed by the Podcast Participants are solely their current opinions and do not reflect the opinions of SMA UK. The Podcast Participants' opinions are based upon information they consider reliable, but neither SMA UK, nor the companies with which such participants are affiliated, warrant its completeness or accuracy, and it should not be relied upon as such.

Transcript

0:04

Hi everyone and a big welcome to the Living With SMA podcast. We talk about all things spinal muscular atrophy related, but topics discussed are not exclusively for individuals with SMA, so there should be something here for everyone. We also do things differently. For starters, our charity SMA UK uses different hosts and everyone involved gets a final say in the creative process of making these episodes. We cut through the jargon and the content is accessible for everyone. All the stories are individual and we are committed to sharing as many different perspectives as we can for our listeners. So if you're listening to this and have a burning desire to talk about a particular subject, then please reach out to us on our social media channels or send us a quick email. And remember, no topic is off the table. If there is something the SMA community wants to talk about, this is the place. We really hope you enjoy the podcast and please do connect with our charity and share your comments online and let us know what you think. From all the team at SMA UK, thank you for listening. Hello everyone and welcome back to another episode of the Living With SMA podcast. Now in today's episode, we're going to be taking a little look at SMA and advocacy as we thought this would be a nice little follow on from a previous episode that we've done looking at content creation within the disability community. And we think it's really important as well to note that although our guests today are going to be talking about their experiences within the SMA community, advocacy, in general, can really apply to the wider community as well. So hopefully a lot of our listeners can relate to it as well. So let's jump in with some introductions, shall we? I will kick things off and then we will introduce our fellow advocates today and see what everyone's all about. So my name is Ross Lannon. I'm one of the regular presenters here of the SMA podcast. I'm 30 years old from Cornwall and I have SMA type 3. Now in terms of advocacy, I run a blog called A Life on Wheels and I've done so for several years now, sort of sharing an insight into my life. I like to share sort of a bit of lighthearted sort of comical lifestyle stories about things that I get up to, almost documenting life as a full time wheelchair user whilst reviewing sort of accessible activities, events, and products along the way as well. I'm going to hand the baton over now to Portia if you can give an introduction to yourself, please? Hello everyone, I'm Portia. So I am mum to a little boy who is now six and he lives with SMA type 1. He has an Instagram account managed by me called Ezra's Adventures and it really started as a way to sort of let my family and friends know how we were doing, I guess, but has sort of because, I suppose because he was one of the first kids to get treated, the type 1 children to get treated, it's ended up as being sort of a site where people can go and just see what we're up to really. Professionally, I work as advocacy lead at SMA UK as well, so that's a very different sort of string to my bow, advocating on a wider scale through my job. Awesome. And Eden. Hi, I'm Eden. I'm 23 and I'm from Essex. I have SMA type 3 and I would say probably the main platform as you will. I share things on my Instagram which is living with SMA 3, basically just sharing what it's like for me living with SMA, sort of challenges that we come through, and just general life fixing probs. Awesome. Maxwell, can we have your intro? Hello, I'm Maxwell. I'm a university student and I do a lot of advocacy on TikTok and Instagram. My name on there is Maxwell McKnight and I kind of just show my everyday life. I kind of started off just to really connect with other disabled people really and then I realized that people really were inspired by me and so I carried on doing it and now I work for like a few different charities volunteering. So yeah. Brilliant stuff. And last but not least, Hamane. Nice to meet you guys. Well, my name is Hamane. I have SMA type 2. I'm 16 years old, starting my A levels just started in September. Not really interesting but I'm doing psychology, sociology, and religious studies. I opened up an Instagram account a while back. I wasn't even on the SMA group. I was entirely kind of alone in the way, not really knowledgeable. I opened up the account to kind of teach other people what it's about to have SMA and just raise awareness of what we have to go through. I was inactive for a little while and then I got invited to talk about Risdiplam, which is a treatment on ITV news. And then ever since then at school, I've been doing like these presentations and talks to the younger years and the older ones and just any opportunity I have just to go on the news or to speak at school and then I'll do it. Love it. I love it. What a team, hey? This is quite a lineup here. I like this. I feel like we're a pretty terrible version of the X Men, but anyway, we're revolving then. Portia, I'd like to start with you from a more professional point of view. I feel like we need to start with anyone who is listening today might be thinking, what is advocacy or what does it mean to be an advocate? And obviously, as the advocacy lead for SMA UK, what does that mean? I think a big part of the job is raising awareness of SMA as a condition. Also, being really connected to the community is really important for me because I want to hear what's going on in people's lives. And then when I find the issues that I'm hearing from several different individuals or several different families are experiencing the same issues, then I can take those to the people that can make a difference. So I'm on the steering group so the Reach Network, which is a group of SMA clinicians across the country. So if there's anything clinical based, I can take it to them. I work very closely with bigger disability focused charities like MDUK and Genetic Alliance. They have really good connections with Parliament. I work with them quite closely to take the wider issues like, I don't know, there's so many, mental health, cost of living, coordination of care, all these big issues. I work with the bigger charities and just really input the SMA voice into that. Work with pharmaceutical companies to make sure they really understand what it's like living with SMA and the challenges that people are facing. Make sure they know where the gaps are in treatment, therapies. Yeah, I'm quite busy. I love it. She's a busy lady. It sounds like it's almost one big collaboration. It's working not just solo but with a lot of other people and places as well, which is great. That all helps to get the word out, doesn't it? Absolutely. It does. Especially when you're Y to Z. Yeah. True. Yeah. Maxwell, I want to start with you and find out what your opinions on advocacy are. What does advocacy mean to you personally? To me personally, it just means showing others that they're kind of not alone and showing kind of the wider world my challenges that I go through and other people with SMA, what challenges they go through and just showing my everyday life really. That's kind of what it means to me. A lot of people don't know the cost of a wheelchair or the fact that I have to employ my own care team and there's so many things that go on in the background that people don't fully realize and yeah, it's just bringing awareness to that really. Yeah. And so similar question to you, Hamane, because you said you're only 16 years old as well. You've clearly got enough on your plate in terms of your studies and everything at the moment as well. So what does advocacy mean to you and why did you really get into it at such a young age? It means a lot. I was very shy in year six. I would not speak publicly at all. You'd have to drag me on stage to do anything. And then I found my confidence through acting. And then I realized, when you do acting and drama, you have a voice. And then I realized advocacy is also a voice and I can talk about the SMA community and just raise awareness of things that don't go through people's heads and also to connect with able bodied people. Because they also struggle. I've seen my friends struggle to understand things. So they're like, how do I help you? You want me to ask you for help? What do you want me to do? And they don't understand what they're supposed to do, how they're supposed to react. Sometimes they can overthink. And I think it's important for people that have a disability and for people who don't have a disability to join together and find kind of a common ground and understanding so that we can communicate and we can just live in harmony. Yeah, there's a definite sense of community when it comes to advocacy, as well as educating those who are not within the disability community as well, which is a really nice aspect. Me personally, I know when I first started, I don't... And to this day, I still kind of not struggle with the idea, but I still don't really see myself as an advocate because, for me, I'm just sharing aspects of my everyday life and things that I get up to that I don't see myself as one of these hard hitting campaigners. But then sometimes when people say to me, oh, you're an advocate for this or you're that, and I'm like, am I though? But technically, I guess I am, because there are people from outside of our community that are looking in and thinking, oh, actually, I've learned something because of you now, which is not something I really thought of before. So yeah, it is an odd one. Eden, I'd love to come to you and sort of find out really, what made you start this journey, and sort of when did it all begin for you. Yeah, I mean, I think very similar to what people have already spoken about, but I know growing up for me, there was really not a lot out there. There wasn't... Not that I knew of a big SMA community. I think back then it wasn't even called the SMA UK Trust. It had a different name. And I think growing up as well, I did struggle accepting that I was different and what that meant to me, and explaining it to people I kind of struggled with. So I think through making a page for that was one way I was able to express that and share it. And I know people that sort of I grew up with never really knew how to ask as well, similar to what's already been said, but what help I need or what is actually my condition and learning a bit more about it. I think that's sort of where it stemmed from is sharing like what it is like and how people can actually talk about it and it doesn't have to be such a taboo topic. Yeah, and I think you raised a really important point thereof sort of back in the day, without making us sound too old here like there wasn't a lot of this out there online specifically. We all know how far social media has come over the last few years. But like we see a lot more of it now, which is really a great thing. Portia, sort of coming to you, you kind of have to juggle two aspects of this. On the one hand, it's your day job, it's what you do and it's what you're paid to do and it's what you're trained in. But on the other hand, you've got this personal level of being a mom to a child who has SMA. How do you find that balance of advocacy? Yeah, these are very blurry lines, I have to say. I think because before I came to work with the charity, I've been there year and a half now. I already had quite a big network of people that I'd never met but were actually becoming friends with, in the type one community especially. And so when I then stepped into the role of advocacy lead and these people know me personally and sort of, so then I get messages, private messages about the state of the standards of care for example, not in my working hours. And so it was really difficult to find a balance I would say. And it really did completely take over my life and I had to be, well it still does, to be honest, but I have learned to be a little bit more disciplined about, answer when I answer messages and how I respond and things like that. Yeah, I imagine like the emotional element of it is... Yeah, really. I think as well, 'cause I'm sure you probably go to these events with these big wig people and you just wanna shout and scream because it affects your personal life, whereas, you are still there in a professional capacity sometimes as well. Yeah, it's true. But having that personal story is actually the most powerful thing, going into these places and that's what they wanna hear. They want to hear the patient perspective. And I may be able to come and bring my own personal perspective as well as from the wider community, which has been really, really effective. I mean, I've made MPs cry, which I was quite, quite pleased with... I mean that's best claim to fame going, I think. Definitely. In terms of actual content creation then, Maxwell, I'm gonna come to you because I've just sort of... I've followed you for a while and I've just seen your content go from sort of strength to strength. This guy is definitely the guy to watch. What are like the first steps when it comes to starting out and creating content? I guess it's really hard because at the start you kind of don't have an audience, so it's like you're not really talking to anybody, you're like talking to yourself. I guess it's just like pushing through that and coming out of content even though nobody's watching it. And I think if you're passionate about it, you are naturally just good at it and you find a way to connect with other people. And I guess 'cause we're in the SMA community, we can collaborate with other people and kind of get their kind of reach as well. I guess lately, 'cause I've been doing it for so long, I've kind of got a little bit better at it, like editing the videos and things like that. But it does take quite a lot of time. Like I spent three hours editing a video the other day, and then sometimes they don't do well and then sometimes they do do well. So it's quite a hard thing to get around. But consistency is definitely the main thing. Yeah, no, I think we're kind of all nodding there. Like, it's the most heartbreaking thing when you put so much time and effort into something and then it almost doesn't get that reaction or engagement that you really hoped for. Yeah. And then you can post the most stupid thing and it just, really resonate with people and you think, oh, like... Yeah, no, the funny things always do so well as well. But I guess it kind of, you connect with able bodied people a bit more with the jokes I guess, and it's a way of them kind of understanding your life. So yeah, I think that's definitely a good approach to guide it as well. Yeah. And Eden what would you say to people, 'cause sometimes people might think that to be an online advocate, you've gotta have all the equipment, all the cameras, all the money in the world, but actually that's not always the case, is it? No, not at all. I think just sharing what's real, really like you don't need any equipment for that as such. I know... I mean, I don't know what anyone else uses, but it's really helpful to hear Max talk there about starting off at the beginning and just posting and even though he might feel a little bit silly, like just talking like he would to anyone. And sharing that and showing the real side of it is actually probably what engages people more than what's filmed on or how extravagant it might look. Yeah, I think again, like sort of similar from my personal experience with blogging as well, a lot of it comes down to confidence in the very beginning like I was almost like embarrassed to put certain things out there or, share certain things. And I think that's why I started with the blog because it was just written and it was so edited to the extent where I could share exactly what I want and I'm writing it. I didn't have the confidence to be on camera making videos and speaking, so I thought if I go down a blog route, I can just write, and I used to watch a lot of YouTubers and things and thinking I'll get there one day. But the sort of blogging was a good start for me. And then it is nice just to watch that progress. Hamane I guess everyone has their own methods, don't they, when it comes to the content they create and they sort of adapt throughout time based on what their audience is like as well. Has your content changed over time? Yeah. I would say that I kind of started off with more written posts on Instagram and it's such a small account, it hasn't grown big. It was inactive for a long while and I'm starting to go get back into it and it has like 50 followers I'd say on it and it's called disability accessibility. And then I slowly started posting like pictures of me and videos and I'm not at that point where I'll post videos just'cause that's not something I'm comfortable with. But a method that I really like and you would have to be in person for that is just speaking at events like I did at school two times, one to my year, one to the lowest year. So that was in year seven. They were in year seven, I was in year 11, I going on the news as well, or being in front of that camera and speaking and talking about med and so anything that is in person with a microphone and the camera, I can do. So when it comes to Instagram, which is the only platform I have right now, it's more written posts and I know people's attention span is a lot lower now 'cause there's this generation and everything, not criticizing, but I just kind of realized that when I speak or when I show a video, it does do better than just written. So yeah. Yeah, that's the thing, isn't it? Social media is... Yes. Changing with the times. Everything seems to be, TikTok now, which back in, you know, years ago probably when we all created our accounts, that wasn't even on the scene. So it's, you kind of have to go with the times as well to sort of keep up with the trends and hone in on the viewers through that. Portia, I wanna sort of focus a little bit more on the awareness aspect of advocacy. What role do you think advocacy plays in terms of awareness when it comes to like long term conditions? So I think talking about the Instagram that I have called Ezra's Adventure SMA type one. I mean my son lives with really complex needs, so, you know, he's tube fed, he's reliant on a BiPAP overnight. He has, you know, can't barely wait, can't reach and that's, there's lots of things he can't do. And I think that people think that that means our life must be a bit miserable and sad and I just, I think my main aim on Ezra's adventures is to raise awareness of the fact that we do have fun and there's lots of things we can do and we get out and about and you know, despite it he's a happy, really happy boy. So that's my main aim is just to raise awareness of the fact that people living with SMA aren't miserable because of what they can't do. And actually, we just embrace what we can do and just get on with our lives really. Yeah. Yeah. I mean you mentioned there about sort of using the platform to have fun. There is the best video on your Instagram of Ezra just belly flopping into a swimming pool or a hot tub or whatever it is. It's amazing. Yeah. Yeah, he is amazing. And it's a bit scary 'cause he doesn't have the muscles to get himself back up out of the swimming pool. So we have made a system where he taps me on the leg under the water and then I know he's run outta breath. No pressure That's brilliant. Yeah, it's just about making things work really. Yeah. And, Eden, as well as like obviously there are positive aspects of being an advocate, and that it's great that we're all here raising awareness. I think it's really important to share that it's not all sunshine and rainbows as well. There is definitely a darker side to the internet that comes with advocacy. What toll does it take on you as an individual sharing such intimate parts of your life online? I mean, you have to be quite vulnerable, don't you, if you're gonna be sharing these personal experiences. And I think that can be quite hard sometimes. I know for me, getting messages from other people who might be experiencing similar situations or potentially even worse. And I think as well, I know that quite a lot of people that I have following me are parents of younger children who might have recently been diagnosed with SMA, and they sort of wanna see what it's like, like later on in life. And so I do feel like being conscious there as to what I'm posting in regards to not wanting to, I don't wanna say, scare anyone off as to, you know, there is barriers also being realistic. And I think I loved Portia's post recently about, you were just standing there talking about the, like the real life of living with SMA. And sometimes that it can be really hard and yeah, I think there's that fine line between wanting to, you know, advocate and raise awareness, but also wanting to be positive in that way. But then living with SMA or a disability isn't always positive, but not making your account too negative, it can be quite hard to find that balance there. I think that would be yeah, the main thing. Yeah, I've had similar conversations with friends before that, have almost, not criticized me as such, but almost criticized that everything I post is like a positive focus. But me, that is on a personal level, something that I feel passionate about, showing disability in a positive vibe, because I think the media and other avenues are so quick to show disability in a negative light that I want my platform to be more positive and show people more of what we can do rather than what we can't. But some people do look at that as if you're not being a genuine representation of the community, whereas, you know, you just need to look further afield. If you want to read negativity, I'm sure there are accounts out there where you can find that, but, don't criticize me for wanting to show the positive side of my life. So I totally get where you mean there about the balance. Maxwell, I wanna bring you in talking about the sort of more reality of being an advocacy. It can be almost quite draining as well as an individual. Can't it? Have you found that, do you find it sort of tiring sometimes? Or do you almost find like a bit of pressure behind this role? I feel pressure when posting on Instagram quite a lot because the algorithm kind of works in a way where you have to like post every single day to get like quite a good reach. And it's hard coming up with ideas and still being honest and positive and not showing that kinda negative stuff. Because I think also social media loves the negative stuff, so when you're posting the positive stuff, it might not as like get as many views. So that's definitely something that's hard. And I think on some of my videos like I've got a bit of hate on like the driving video that I did and stuff like that, which is, I don't mind the hate because like I just laugh it off. But when some people are like, they know the facts and they still don't think I should be doing certain things, it's quite hard to take sometimes, they don't think I should live the life that I do or don't deserve it. Yeah. And I think again, it comes down to individual of how well you handle that. Like you just said there, it doesn't bother you as much, but you are clearly confident enough to sort of shake that off, whereas some people that would really affect them. I've had negative comments before and I am this guy who I can have a hundred positive comments, but that one negative one will bug me, and I hate being like that. But how do you deal with that? How do you stay so positive, Maxwell? I don't know. I guess it's just like a mindset that you build when you live with a disability of your life, you know? But yeah, no, I just kind of laugh it off. I joke about it, that they're the smaller person kinda thing. Yeah. Yeah. I think Portia's dog was laughing at you there as well. I Know, I know. It's known for it. Hamane, I wanna talk to you about the privacy aspect of being an advocate online. Do you sort of ever struggle with that aspect or does it not bother you sort of sharing intimate details of your life online? I do struggle with it. That's something I wouldn't lie. When I did realize though, that when I shared a story before about something that was very intimate to me and other disabled creators, my content just kinda skyrocketed for a little bit, and then it went back down and I realized people do need to hear the true and vulnerable moments. 'Cause if they don't, if there's just something missing, people can feel that. I don't know why, I don't know how, but it happens. And as an advocate, I always consider myself like a baby one, 'cause I only thought now I'm 16, I don't have many networks, you know? But when you do, it's so hard to see because there's that stigma of sharing the true moments and you're scared of like, what if this person judges me, or what if this person doesn't understand? But that's what it's about. That's what you have to do. Not that you have to do it, but it's just something that I would recommend. But obviously, if it's something that crosses your boundary, then don't do it. I've gotten questioned about school before I even started advocating when I was in year seven. That was like punching inappropriate, inappropriate comments and stuff. I was so uncomfortable with that. I was cowered... How, how old was I? I must have been 10, 11. I was so shocked. I was like, I can't believe you're asking me this. And then I realized, oh, people ask these questions 'cause they're not sure how to approach you and stuff. Yeah, no, it's a really important point. I think as well, like sort of a similar example here, I think sometimes it's actually easy to forget that it's so easy to post something online and then actually realize that people are actually watching this. You are letting them into really personal aspects of your life. I'll give you an example here. A few months ago I shared a video, which was like a kind of like a house tour. I was giving a tour of my house, but showing all like my accessible equipment and adaptations that I have in the house. And you know, it was a collaboration, I was really proud to be a part of. Then it wasn't until I went into work the next day and the amount of people that were commenting like, oh, I liked this in your house. And I was almost a bit like, I forget like, oh, you've seen inside my house now. Which makes no sense 'cause I posted that online to my followers, but then part of me just kind of forgets or doesn't realize that actually, people are looking into like really personal parts of your life. I think after that video as well, because it sort of did quite well. I even had somebody comment saying, you know, oh, I walk past your house every day. I like your dog. And that freaked me out. I was just like, oh, actually, I think sometimes I need to be a little bit more careful about what I post. Obviously, I'm not posting my full address online, but you see what I mean here, like, yeah, it's, it's easy to kind of forget that people are watching when we post these things sometimes. Eden, I wanna sort of talk to a little bit about the difference between a lot of people nowadays, get a little bit of stick for being advocates or influencers. They've got a bad reputation, sort of influencers, campaigners. How do you feel about that side of things? Because there's an element of inspiration porn here, isn't there? Where some people... Some people don't mind their lives being looked at in an inspirational way, whereas other people don't. So what are your thoughts on that? Yeah, it's difficult, isn't it, because you want to inspire people as such and you want to raise that awareness. But then, like you said earlier, I'm just living my like day to day life. Like this is nothing new to me. And I think with that, a lot of the content that I started creating, I didn't even think about posting for a long time. So of my friends were like, oh, I didn't realize like that's the way you got on a plane. Like I never thought about that. And I think that's where it comes from, like sharing things that people are surprised about and think, wow, that's so different. But to you, that is how you've always done it. So it's not any different to like I said, to day to day life. But yeah, it can be a bit weird then knowing like what to post and what is actually interesting. 'cause to me it's no different. Yeah. Yeah. And Portia, advocacy can really be used as a education tool here as well, can't it? For sort of younger and older generations, regardless of your age. We can all learn at some point, can't we? Yeah, definitely. I mean, I love following all you guys because it gives me maybe a little bit of a look into the future for my son, well, all our lives really. Also in a similar way, Ezra being one of the oldest type ones in the UK, other, you know, newly diagnosed families are able to follow him. And, you know, even if they've been diagnosed late and treated late and they're living with complex needs like EZ, they can think, you know, I wanna give them hope. Like, yes, I do show some of the negative sides. I did a little post that Eden was talking about the other day where I was, you know, I had had a really bad day and I was having to do some really aggressive chest physiotherapy, which includes hitting him quite hard and squeezing him and shaking him to get gunk out. And so I just, you know, very sort of off the cuff just sat down looking horrific 'cause I hadn't slept much and just gave some of the honesty. But I think having that in the mix is important. But generally being able to give people, you know, hopes for the future, it's really great. And I do the same to the older people living with SMA, it's really important for the community, that education piece for sure. Yeah. And as well as being educational for the community and it being, it can also be beneficial, for ourselves as advocates as well. Maxwell, I wanted to sort of touch on to you on this 'cause being an advocate, not only are you sort of, educating other people, but this is almost could open doors for you personally in terms of employment options as well, can't it? Because there are opportunities within social media to now make it a career as well. Oh yeah, a 100%. I mean, when I first came onto social media, I kind of did it as a way to kind of look at my future self as well. Like other people have said,'cause I kind of wanted to know what my life looked like. Of course, I know Ross, he lives like five minutes away from me. So I kind of wanted to know some other people with disabilities. And then as I started kind of getting bigger, like I realized I can do volunteering for different people and obviously it's been quite good for my CV getting different things on there. Like I've done a speech with Caudwell Children's, a Butterfly Ball, which was really good. And that's kind of allowed me to get within their kind of ranks and now I'm doing bits and bobs for them. So yeah, it's been, it's been really beneficial. And of course like for LinkedIn and things like that, now I've got different companies kind of searching me and yeah, it's just very good to get those connections. Yeah, I mean, talking of connections, Maxwell's just casually hanging out with Louis Hamilton on his Instagram. If you check him off, like, it's mad. Yes, It was a crazy moment. I can't lie he my idol, but yeah, It is amazing. I think it's really important to note as well that in terms of advocacy, we don't wanna sort of scare people off with this conversation thinking that you have to be, you know, confident in front of the camera. You have to make videos, you have to do this, you have to do that. Hamane, it's really important that people can know that they can be advocates or allies more behind the scenes as well just by supporting other people's work, you know. If it's online, they can like or share things, they can also be in person having conversations with people. Is that something that you, 'cause we all have to start somewhere, don't we? So, yeah. Is that something you sort of agree with, sort of behind the scenes? It can start off smaller as well, can't it? A 100%. Like at first, even before I thought about opening an account, I was just like liking comments and sharing it on my main account. Or when I saw a video where somebody would say a rude comment like, oh, I didn't know you'd look the day bought us... Just something that was rude to enable And I would reply there and say like, you can't say that, it's quite mean. That was one of the video. It was on my main account. I already had open my, disability one. There was this girl wearing these shorts and it was short shorts. And somebody in the comment was like, oh, it looks like you are wearing like diapers. Like, you just looked awful. And I wrote a whole entire photograph on the video and I said like do you realize what you're talking about? Like, disabled people might have to wear them. Like I've seen disabled people having to wear diapers or catheters or whatever. And it has started a whole debate in the comments, but I don't regret doing that. I got quite a few likes on that video. And I just think it's important to start in those little bits. Like my account is still small, and that's okay. It doesn't mean I've really given up with it. Obviously, I'm so much more busy. Like I said before, I don't have networks like you guys do, but it doesn't mean I'm not contributing to something. My friend, I'm not gonna say her name, obviously, for privacy reasons, she got diagnosed with diabetes about a year ago. And I was... Because I have a disability, I was then able to connect with her more and I was friends with her for five years, and then she was really inspired to talk about it and she made like an account about it and her experience with diabetes and it's just amazing to see people start doing small things and it's so important. Like my friends, they don't really speak about disability obviously 'cause they don't have a disability on social media, but they still support me. They like my comments, they ask me questions, and other people who aren't like friends, they're now more comfortable come to come up with me, ask me questions. And it's just really important to start. Yeah. Ask more level and just, if you wanna build up, you can if you don't want to, that's okay. Yeah, that's some really great advice, I like that. And Eden, there's such a range of topics that you can cover as an advocate as well. Like, I love the fact, I had a little scroll through your page again earlier and the variety there, from, one day you're talking about university from a disability point of view, the next minute you're talking about chopping fruit, you're chopping fruit and you're showing how this varies based on disability strength levels or going upstairs. There's no limit. Is there really of showing what we can or can't do? No, not at all. And like I said, I think, just showing that day to day stuff again, not realizing that we might do it differently because that's our norm. And if you wanna, yeah, post something a bit wider, or if you wanna do something so specific on a part of your day. I think that's why I do like social media so much that... What, I've lived with this condition 23 years every day I'm still learning so much about it from other people because it is such like a broad spectrum of a condition as well. Yeah, I can't even remember what you asked now. I think I went off on a tangent there. Yeah, no, it is just the fact that there's so much variety really isn't there that you... There's so many topics you can cover, I think it's great and I think between us, we all cover so much ground. Maxwell, is there anything off limits, anything you won't talk about? 'Cause I know you talk about quite, as well as the lighthearted fun stuff, you also talk about really hard hitting subjects for a lot of people such as carers and traveling and relationships. Is there anything that you just won't discuss? I'm trying to think. I've... To be fair, I probably wouldn't talk about my relationship, like deeply. I talk about most things to be fair though. I think it's important to share all the different aspects. Obviously some things I won't go into like massive detail if it's like personal care or something like that. But generally, I'll find ways of talking around it but not directly talking about it but kind of talking around it. Yeah. Yeah. Cool. I like it. And Portia, what do your family and friends think about you sort of being an advocate and sharing these aspects of your life online? I think my mom probably worries about me 'cause she thinks I take on all the woes of the SMA world, and that I don't stop. For example, we went on a little holiday, we're in Kent and quite a lot of SMA families in Kent and we are on a little holiday and part of that other day was going for lunch with some friends, some SMA friends. And my mom said, "She was working, she was still working." I'm like, "No, it wasn't working. We were just hanging out." But it does. So yeah, they worry about me. But they enjoy watching the comms and it, they like to be,'cause they're in Cornwall actually Ross, down your neck of the woods, so they like to see what I'm getting up to 'cause we don't see them that often, my family, yeah, my friends, I don't know but they think it's great and they've learned a lot about SMA and working with SMA. Yeah. Oh, that's really cool. I think it's quite funny because I genuinely believe my family have no idea what I actually do for like when it comes to the sort of like the freelance advocacy work. Luckily my family are not on Instagram, so if anything I wanna share that I know that I don't want them to see, it goes on Instagram. 'Cause yeah, the amount of times I might share something on my blog or I might slip a cheeky swear word in there, my mom will be on the phone like, did you really need to say that? I'm like, "Mom, I'm a 30 year old man," like, and she's like censoring my posts. But it's brilliant really. Guys, we are sort of coming to the end of our chat now and I just wanted to end on a sort of high here now, sort of, I'd love to get one little bit of advice from each of you. For what advice would you give to someone who maybe is wanting to either start out in the world of advocacy or somebody who thinks I wanna support people as well? So Hamane, can we start with you? We can. My advice would be to do the baby steps. So just talk to your friends about it. If you have a big group of friends, or if it's a small group of friends and then you go to social media, like a few comments. If you're comfortable, share a few stories. And if you really don't want to open an account, I understand, it's a lot harder that way. And if you're not posting videos, like I don't really post videos, a lot harder. But it doesn't mean it's impossible. You can do 12 in school. If you don't wanna show your face, you can also do that. Obviously, it takes more effort, but you can do networking and there's so much you can do out there. And if you ever need advice from me and you wanna talk in more detail to me, I'm always free. So just hit me up. Oh, that's nice. Eden, any other advice you'd like to add to that? I think maybe just like, don't be scared, if you want to do it, then go for it. I know I was quite scared for a long time and I only posted text content and then I finally started to post pictures and then just recently started to post videos. And yeah, just don't be scared, but also if it is something you wanna go into, make sure you have got some support behind you in case, social media can be a bit of a scary place. Just making sure you've got a support network as well. That's really nice. And Portia. Well, if you would like to get involved with advocacy on like a wider level, I am always looking for people's stories, people's voices, people to go and speak at places. So do get in touch via the SMA UK website. I would love to have you on board on the advocacy team. That'd be great. Nice. Love that little plug there as well. And Maxwell, you shared a great video recently, sort of giving some top tips for people starting out in sort of content creation or advocacy. Given some top tips, would you share one of those with us? Yeah, no, definitely, one of them was just to use trending audio. There's kind of like loads and little bits of Instagram that you have to get right, but trending audio, a big caption if you can, and just posting as regularly as you can as well. They're kind of the main things to do, and any content's good content, so just keep on going and just be yourself. What does trending audio mean? If you go into reels, like there's all of the reels that you see. If there's like a little kind of upward tower, it means it's trending. Yeah. I'm the nanny of the conversation. You're gonna log onto Portia's Instagram account later and see her doing the latest TikTok dance, it's what will be happening. And finally, I think I can just sort of add a final piece of advice there is to, as cliche as it sounds, try and be as unique as possible, we're all covering similar stories here, but there is something about all of us individual that makes us different and we all have different approaches. So try and, hone in on that thing and try and make your content a little bit different from the others around you. And I think that you'll be winning. Guys, thank you so much for joining us today and for talking all things advocacy within the SMA community and beyond. Like we said at the start, this is not just SMA related here. I'm sure many of you out there can relate through various other disabilities and aspects within your life. So thank you guys for speaking with us. As always, you can keep up to date with all the SMA UK podcasts by visiting their website or getting involved and supporting, and being an advocate yourself, supporting SMA UK online and becoming an advocate. So thank you for listening today and we will see you all very soon. Goodbye. See you. Bye bye. You've been listening to The Living with SMA podcast. We hope you can join us again next time. But in the meantime, don't forget to like and subscribe so you don't miss an episode. You can find out more on our website at smauk.org.uk.