Ep23: Social Media

Welcome to the Living With SMA Podcast (Also available on ▶ | YOUTUBE)

SMA UK host Ross Lannon chats to guests Sandie Roberts and Maxwell Mcknight about social media. Exploring the pros and cons and looking at how it can offer a great job opportunity for people and even lead to a career!

*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. ❤️

You can contact SMA UK on the following social media platforms ⬇️⬇️

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If you do have any questions for Ross, Sandie, Maxwell and the team or would like to participate in any of our podcasts please email luis.castro@smauk.org.uk

*Living With SMA - 'Social Media' disclaimer:*
The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or 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

[music]

0:00:05.0 Ross Lannon: 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.

[music] 

0:01:15.8 Ross Lannon: Hello everybody and welcome back to a brand new episode of the Living With SMA podcast. We have got a great episode planned for you today. As always, I'm going to be joined by some really cool guests. So I think before I introduce my guests, I'll just give you a quick little brief of what today's podcast is going to be about. We're going to be talking all about social media today and we're going to be looking at the pros and cons and how it can actually be a real job opportunity for people. It can definitely lead to a career and it can be a really handy tool for a lot of people. So that's the aim of today's podcast. We'll start off with introductions. I might as well kick things off whilst I'm talking. It's hard to get me to stop talking sometimes. So my name is Ross Lannon. I am 29 years old, I believe. I'm a lifestyle and disability blogger. I run a blog called A Life on Wheels. I have SMA myself and I'm from Cornwall. So I'm going to hand over now to, Maxwell, if you can introduce yourself, please.

0:02:30.8 Maxwell Mcknight: Yeah. Hi, I'm Maxwell. I'm 18 years old. I have spinal muscular atrophy type 2 and I'm a current student at Anglia Ruskin University studying business management. So yeah.

0:02:44.7 Ross Lannon: Fantastic, and Sandie.

0:02:51.6 Sandie Roberts: I am Sandie Roberts and I am 52 tomorrow.

0:02:57.0 Ross Lannon: Yay!

0:02:57.1 Sandie Roberts: Happy birthday to me. [laughter] I live in the Cotswolds and I am a disability advocate and part time model and full time content creator. That's what I do.

0:03:11.5 Ross Lannon: Fantastic. So as I said at the start of this episode, we're going to be focusing today on social media. I think we all come at this from a different angle of advocacy and content creation, blogging. So I think between the three of us, I think we cover quite a range of online content. So let's strip it right back to the very beginning. Maxwell, if I can start with you. I hear you're a bit of an up and coming content creator yourself. I've heard the word entrepreneur being thrown around.

0:03:47.8 Maxwell Mcknight: [chuckle] Yeah.

0:03:48.2 Ross Lannon: Can you give us a little bit of information about what made you interested in online creation?

0:04:00.5 Maxwell Mcknight: Yeah. So in 2019, I just finished my GCSEs and it was kind of that period where everyone was starting to get jobs. And as someone who's disabled, it was quite hard for me to get a job at the time, because everyone was kind of going into quite manual laboury jobs like at Tesco's and stuff like that. So I took the opportunity to put my business head on and make a business called Digital Horizon Views, which is a drone business. And I kind of did it just to kind of create a little bit of money for myself while I was studying A levels and kind of get into the business world at the same time.

0:04:49.2 Maxwell Mcknight: So I kind of took that opportunity and it worked out quite well. I had quite a lot of customers. So that's where I kind of first started getting into social media.

0:05:03.5 Ross Lannon: Fantastic. And it's really interesting to see how people sort of go down the route of social media, isn't it? I think we all have social media as a social platform. Anyway, but it's that changing it into a business or a career? That's where the sort of interesting topic comes in. Sandie, so yeah, similar to you, what made you invest time and effort into a career in social media?

0:05:38.4 Sandie Roberts: I think a little bit like Maxwell, actually, I think it comes from, partly from need, because there are limited options. I'm a full time... I didn't sort of say that in my intro, I'm a full time wheelchair user. And I have a lot of health issues that restrict me from being able to join the workforce in the way that lots of non disabled people can. And when you have those restrictions, you kind of have to be creative with how you can make money. And then also, aside from that, I think when you are disabled, you have a different outlook on life. You really want to do something that is fulfilling and that makes you happy. Because sometimes life is very, very challenging, not sometimes, most of the time. [chuckle] Most of the time when you're disabled, life is challenging. I'm not gonna pussyfoot around it, it is. So when we can drive something for ourselves, which is our career, I think we want to do something that makes us fulfilled and happy. And when those things kind of come together and you go, "Okay, I seem to be good at this, I seem to be... It's almost effortless in some ways".

0:06:58.2 Sandie Roberts: Because if it's hard, I don't think you're gonna be naturally drawn to do it, because there are some who people hate social media. And if you hate social media, it's probably not gonna be something you're gonna want to do as a career. I probably wouldn't advise you to look at doing that. But if it's something you kind of enjoy, brings out the creative side of you, then I think that's when that, "Oh, hang on a second, people make money out of this, so why can't I?" And then that's when you kind of like pivot from just using it as a bit of a fun tool into thinking, "Okay, how do they do it? How can I apply that to myself?" And that's when that change happens.

0:07:35.2 Ross Lannon: I agree. I think, as well, from another point of view, sort of throwing my experience into that as well, I sort of never really went into social media thinking that it could be a career. It kind of started as a hobby, I think my interest came from blogging and wanting to raise awareness, which comes with the disability world that we're all involved in. I wanted to go at it from a... I wanted a fun platform to share aspects of my life. And then from that, it became, "Oh, actually, there is opportunities here", which people don't often think about. Is that something that's important to you, Maxwell, with your business and that, when it comes to like disability awareness and social media?

0:08:28.3 Maxwell Mcknight: Oh, yeah, definitely. I mean, lately, I've started a new account, which is kind of more aimed at awareness and myself and kind of my journey, like posting about my spinal injections and things like that. And that's been really positive. I've noticed like quite a lot of parents whose children have SMA are quite interested in learning and trying to take advice. And I like kind of posting content and helping and guiding. I've recently started a podcast of Ross Hovey, trying to spread some more awareness and talk about some interesting topics. So, yeah, definitely.

0:09:11.1 Ross Lannon: You're telling me you've got a podcast with another Ross. This is like blasphemy to me.

0:09:18.1 Maxwell Mcknight: Yeah.

[laughter]

0:09:21.0 Ross Lannon: Sandie, do you think people take social media as a career seriously? Because I feel like in general, social media... I'm going to do air quotes here, "influences". There's quite a stigma around it, isn't there?

0:09:38.7 Sandie Roberts: I don't think they do, to a degree. No. I think there's kind of... There's lots of different ways people look down on it. And there's no one way that people will be critical of you having a career in social media. There's a plethora of a smorgasbord. [laughter] And that's difficult, for sure. For a long time, people didn't seem to take notice of anything that I was doing. Because when you start out, you don't seem to get paid at all. You do a lot for free, you do a lot for gifts, and that can be really difficult. People then just think you're getting free stuff, that must be great, and they don't see all the work that you're putting into it. And then there's the other side, just not appreciating the extent of the work that you have to do, even if you are getting paid. From my perspective, what I do, I'm script writer, camera person, editor, makeup artist, costume person, everything, producer, every person. And yet I get paid such a small amount of money. So people don't tend to understand and take the gravity of what it is that you do until you get to a certain point.

0:11:06.8 Sandie Roberts: And then they can be quite surprised. They'll be like, "Oh, well, how did that happen? Like how are you in the paper, or on the TV?" When that starts to happen, then they take notice. But I think maybe it's say, partly a generational thing, partly an education thing. Because I think that people, certainly of your age, Maxwell, I suspect, they would understand a lot more that the fame I guess, that would come from it, but not necessarily the work side of it that comes from it. Whereas my family can be quite surprised if I go somewhere and I'm recognised, they're like, "What, [laughter] that's new, how did that happen?"

0:11:53.5 Maxwell Mcknight: For my account where I spread awareness, I think people at school, people in my year were quite, they liked it and they saw into it. But with my business, they didn't really see it as a real job, quite a lot of them, until I started making money. And then they saw that I was making more money than them doing a quick photo with my drone. So I think, yeah, they definitely didn't really buy into that until I started having results from it. I definitely think they're quite adopting with the awareness side of it.

0:12:31.6 Ross Lannon: Yeah. And I think it's a really fair point you've raised there, Sandie, as well about, it's almost like a bit of a generational divide as well. I know I've had experiences with my family and they've made little comments in the past when it comes to me doing bits of my blog work. For example, say, you get invited to a restaurant to review their food and their access and things like that. Yes, you might get a free meal out of it and you get to maybe take your family with you, which that's obviously one of the benefits of it. My family will sit there and they'll be like, "Oh no, we have to pay, I feel really guilty".

0:13:07.6 Ross Lannon: I'm like, "This is actually me working though. You might think this is just a freebie, but it's actually not. I'm, coming away from this restaurant now. I'm going to spend hours editing a video, editing pictures, doing a write up, writing a whole post, that's hours of work". So from an outsider's point of view, isn't it? People don't realise what goes into it.

0:13:34.0 Sandie Roberts: Yeah, for sure. And I think it's just a case of educating them gently. And I know that there's been times when people have just forgotten that I have a scheduling, 'cause I've got work. No, I might not have an hourly job that I have to go to an office, but I've got schedules, I've got deadlines I have to meet. So I can't just drop everything and go at moments notice to here, because I've got deadlines I need to meet. So it's still a business and we still have to run it as such or we won't succeed, it's just the case of it. But it's our family, so we would gently educate. But again, it's like anything you choose how you educate people. [laughter]

0:14:20.9 Ross Lannon: Absolutely. Yeah. So let's talk about some of the pros and cons that come with a career in social media. Maxwell, what springs to mind from a positive point of view, what are the pros of working online as such?

0:14:39.3 Maxwell Mcknight: Well, I think I just love talking to everyone online, to be fair. I think it's a great... Sharing experiences, getting to know other people. And for me, I get to choose when I do it, and it kind of fits really nicely in between uni work as well, because I can drop it back if I need to a little bit. If I have assignment too that I haven't been doing or [laughter] something like that. So yeah, I think definitely the flexibility for me, as... I'm not going for like a full time job. It's just part time when I can, to spread awareness and get free views and make some money along the way.

0:15:23.2 Ross Lannon: It's all about that money that Maxwell isn't it?

0:15:25.8 Maxwell Mcknight: Exactly, yeah.

0:15:26.5 Maxwell Mcknight: All about more money.

[laughter]

0:15:28.9 Ross Lannon: And I think it is a very good point, the flexibility of it. Whilst yes, there is still a routine and a strict, like you said, Sandie, there is, you know, certain timings and things that need to be done on... That flexibility to work from home, I think over the course of the last few years, I think we can all especially appreciate with the pandemic, how it's enabled us to still have a career and earn money from the safety of our home. So yeah, other than sort of community, we love online communities. Sandie, what other positives or pros of social media come to mind for you?

0:16:11.1 Sandie Roberts: Well, in the same... There's a few things, but one of them is in the same theme, that it's an opportunity to spread awareness to get on my message across to a wide audience. For me, it's, I'm in control of the work that I do, I can choose who I work with and who I don't work with. If I'm sick, I can pull back like Maxwell said, but specifically working in social media, I find that it keeps me, it keeps my mind really active, it keeps me current. It keeps me really excited about what's going on in the world, because I'm a very creative person. I love to create video, I love photography, I love all of that, I love writing. So there's a lot, I really enjoy the creation process of what I do and all these new projects, meeting new people, working with brands. I get a lot of satisfaction from being the person that does that and the connections that you make, not just in the disability community, but in the wider world. It's just been so fulfilling to be able to do that. I wouldn't have been able to do that in a job where you have to work laterally, this is your role...

0:17:39.3 Sandie Roberts: Then you might get promoted to this role and you might have to then leave to get to another role. It doesn't work like that when you work for yourself, I'm entrepreneurial in spirit anyway. I lectured in that when I was younger and I 100% believe in that sort of side of things. So I think that we have a lot more control over our destiny when we work for ourselves in that way. But the social media world in itself moves so, so fast. There is a lot of energy that comes from that, that although it can be detrimental, we'll probably talk about that, it can also energise you and keep you feeling like you're part of the world, the wider world, the outside. Sometimes we can't not always engage as a disabled person. We can't always engage in the world that we might want to, but this way we can feel 100% part of social media, just like everybody else. It's something we can fully engage in.

0:18:40.4 Ross Lannon: We really can. Yeah. And I've met some of my best friends through social media, through the community, and I would never have met them if it wasn't for my work through the blog and things like that, which is really great. And I think for me, one of the biggest pros of it is that media representation. Like you said, you can control what you put out there. So for me, I find it really important that whilst we're honest with what we share, a lot of disability content within the media is very negative. So it's in my interest to have the control to post. Actually, there's a lot of positive that happens as well. So that media representation, sort of diversity within brands being that role model as such for many people that... Because when we were growing up, there really wasn't many people with disabilities in the media in general, whether that's social media or whether that's TV, radio, there's not been a lot.

0:19:44.8 Sandie Roberts: Yeah. Well, there still isn't that much. There still really isn't that much, is there?

0:19:49.4 Ross Lannon: No.

0:19:50.7 Sandie Roberts: And you're right. I think that's so, so important that we can control it's our voice that's being heard, not someone else's interpretation of what they think we should be saying. And I think that is... I love that, I can choose what I'm saying. And I always talk about being authentic. If I'm having a bad day, I'll make sure people know about it because it's really essential that we don't dilute down our lives. It's shown, I mean, as long as we're comfortable and feel safe.

0:20:24.3 Sandie Roberts: But we show the truth of our lives because if we just only show the positive sides, there's going to be people that feel lost and alone at home. This doesn't reflect to me, why am I feeling like this? And it's dangerous.

0:20:41.0 Maxwell Mcknight: Yeah. Absolutely.

0:20:42.5 Ross Lannon: So obviously, with all the pros that come with this, there is the obvious negative side of social media. I think we've all dabbled in it, some more than others. Sandie, I feel like as you're the more experienced social media person within us here today, I think speaking to you briefly already, I know you've had quite a few negative experiences when it comes to online safety and things like that. Is there some cons that you're happy to share with us? What is your biggest fear of working in social media?

0:21:24.9 Sandie Roberts: It's knowing how vulnerable and how open to be. So there's a really fine line between sharing with your audience and being open and honest and vulnerable, but you've got to make sure that you create a safe space for yourself first and foremost, because the outside world, we can't control that. And there are some very horrible people out there for some unknown reason who just take so much joy in crushing other people, and we don't know why we can't control that. But if we start to create a social media business, it will be open, we will be putting ourselves out there and we will be open to attack. So we have to make sure that we pass everything through these gates. "Is it true what I'm saying? Do I feel like it's absolutely necessary that somebody is gonna benefit from this?" And then lastly, "Is it safe for me to say this? If somebody is gonna attack me from that, do I feel like I can stand up for myself about it?" And sometimes we might feel like, "It's okay to make myself feel vulnerable about this because I know that I can take it if someone has a go at me about it. I feel strong enough".

0:22:49.7 Sandie Roberts: And sometimes, even though we know that somebody else might benefit from that thing, we might not feel strong enough ourselves to take anything if someone has a go, so just don't share that part. And we don't owe the world anything, that's really important. That's one thing, if somebody wants to go away from this and they've heard anything I've said, and they've decided to go away and try and make a career out of social media, please, please remember you don't owe the world anything of yourself. You choose what you put out there, that's the only thing I'll ever want you to remember from what I've said. And then moving forwards. Once you feel safe, there are other things to remember. It can become addictive, you can become addicted to that validation. Do they like what I've said? Do they like what I've written? Do they like how I look in this video? Am I good enough? Am I good enough? And that can be quite insidious in the way that it happens. Now, Maxwell's nodding because you might think that would never happen to me. That's not the kind of person I am not vain.

0:24:02.0 Sandie Roberts: And I'm not vain. But there was a time where I was picking my phone up because I had to pick my phone up and check has it been looked at? How many views has that had? And it wasn't because I wanted to, it was because I needed to. And the reason I knew that was because if I didn't, I felt uncomfortable. It was very strange, so I had to then pull right back and put some measures in place, really strict boundaries, because it's designed to do that. Social media is designed to work on your brain like a drug, it's meant to make you feel good by using it. Since we're not doing anything wrong, we're not malfunctioning in any way, it's designed to do that. So we have to be careful how we use it. And then when we're creating that content and of course we're getting, hopefully doing successfully, we're getting those people saying, "This is wonderful. I love what you've written, you look fantastic in this or whatever it is that you've done". That can be quite challenging to remain grounded. So being aware of that and putting boundaries in place, setting time limits on how much you check your phone or how much you're on your phone for your social media is something I would suggest as well.

0:25:25.2 Ross Lannon: I think that's some really sort of sound advice there. Maxwell, is that something you can relate to as well? Because I think it's fair to say our generation are sort of growing up. We see kids now with mobile phones that, you know, back when I was growing up, we didn't have a phone until a certain age, whereas it seems to be coming into our lives a lot younger now. And when you want to have a career in social media, I suppose the joy of a nine to five office job is that when you come home from work, that's it, you're switched off and your time is your own. Whereas if you want to have a career in social media, it's not a nine to five. Is that something that you worry about Maxwell?

0:26:08.2 Maxwell Mcknight: I think is, it's quite sad actually, because my awareness account that I created, I created it after I left my A levels and went to university, because I was actually quite scared of being bullied at school for what I was posting. And like to open them kind of into my world, it kind of almost made me feel like quite vulnerable, even when I was at home, knowing that they were kind of let into my life. Because I did have some problems at school with bullying, but I think that's why I kind of left it after I left for me to start posting the more intimate stuff, even about my spine operations and stuff like that, so things wouldn't go round school. So that was definitely a worry for me, but now I've done it, it's great. All the positive feedback that I've got and everybody at uni, they all love it. They're like, "When's your next post? When are you doing this? When are you doing that?" But no, I think when people are younger and they don't really have, they don't really understand, they can be quite rude sometimes. But yeah.

0:27:26.1 Ross Lannon: Yeah, no, I think that's a really good point. And it's great that you can... Again, it comes back to what Sandie says, you're in control of what you post now. And as long as you enjoy it and your audience are enjoying it, I think that's obviously the most important thing. I'd like to touch a little bit more on the process of setting boundaries, because I think that's a really important subject if you are considering a career in social media. Sandie, can you tell us a little bit more, I know when it comes to online safety and things like that, we open ourselves up to... Especially if you have a disability, it's like a whole other world of potential trolling sometimes. Are there any sort of experiences that you're happy to share with us?

0:28:24.8 Sandie Roberts: Yes. I can talk about the one that I've shared with you previously.

0:28:30.1 Ross Lannon: Of course, yeah.

0:28:30.6 Sandie Roberts: Is that okay with you? So I do think there are a lot of rude people in the world. [laughter] But when you're disabled, there are even more odd people. And that's been my experience, it's 99.9% men, unfortunately. And because of my age, I'm an older woman, and certain group of men enjoy that as well for sexual reasons. And when you put the two things together, there's kind of this word called devotee, I don't know if you've heard of that, but it's a kind of a name for a type of person who... I'm trying to think of words that are politically correct to use on this kind of platform, that really attaches themselves to a person, and then will just obsess over that person. And there are groups of them, and there are tens, hundreds of thousands of them. So if you're going to do something, and I know I do lingerie modelling, as well as fashion modelling, but the way that they're attracted to me is clothes modelling, wasn't my lingerie stuff. So it's just a woman in a wheelchair. So if you're going to put yourself out there, you don't have to be what you think is in a sexual way.

0:30:05.3 Sandie Roberts: It's just, you could just be showing your feet, for example, or your body in clothes. It's just that you're on a screen, and you can be objectified when you put yourself on social media. And I didn't know that those people existed, and it became... It was a real shock to me. And it did really affect my mental health, and it made me feel incredibly vulnerable, scared that they would find out where I lived, because it was a very extreme level where they flooded my account with tens of thousands. And I think at the highest point, it was about a thousand an hour at one point. And it was so scary. But now I know, and there are some measures you can put in place. So you can put certain settings in your messages, so that you can field those things out. You can put certain keywords in so that they don't come up in your comments and also in your messages. But you can't, fundamentally, you cannot stop them from following you. If you have an open account, they can follow you, and you would have to go through manually and remove them. But you have limits on Instagram before it thinks that you're a robot and it will block you from doing that.

0:31:30.0 Sandie Roberts: And it does harm your growth if you do that. So you have to be very, very careful. There doesn't seem to be enough help. If I'm really honest, there's not enough help from Meta. Meta owns Instagram and Facebook. There's not enough help and protection for the disabled or vulnerable communities from them to help us in this way. Because there should be some form of protection that we could put a setting on that we vet. If we're having problems, we should be able to put a setting on that we vet people before they come and follow us without having to go private. Because you can't have a private account if you're making your living this way. So being aware that it could happen, if it happens to you, you have not done anything wrong. You haven't made yourself, put yourself out there in a provocative way. Like I said, I was wearing dresses, just ordinary dresses from High Street, I wasn't wearing anything provocative, acting provocatively or anything. So it wasn't... It's not you, it's them. But it's just being aware that there are people that are strange, make sure that you research. I'm very happy for anyone to contact me.

0:32:49.0 Sandie Roberts: You can contact me via my... Email is best, because my DMs are locked down so that you can't get to me very easily, but you can try. If you're already a follower of me, it will come through. But if you're not a follower, it doesn't come through. But if you want me to help you set your DMs, I'm very sorry, set your settings in Instagram. Very, very happy to help you to make you feel safer. Happy to help anybody that you drop me an email.

0:33:13.5 Ross Lannon: Fantastic. And I'm sure many people will appreciate that. And safety is probably the biggest thing when it comes to social media. Like we've said, there's so much positivity that comes from social media and opportunities. But we're realists and we have to highlight that it can also be a very dangerous thing, topical at the moment. Mr. Elon Musk, if you're listening, the fact that this whole verification thing that you don't... Anybody can buy your own verification now, that verify button has always been there to sort of prove that that person is the genuine version of who you think you're speaking to. So yeah, like you said, these big organizations, they have a lot to sort of step up and keep us safe, don't they?

0:34:04.9 Sandie Roberts: Yes. Yeah. Just remember that it's not you, it's them and try not to let it put you off. Because there are ways to keep yourself safe, it's about having those boundaries, it's about thinking about how you present yourself within your boundaries. Talk to the audience that you are trying to reach and just block those other people out. They will interpret your content however they choose to. You can't control how it's received, just forget about them. They're not the people who you need to be worrying about.

0:34:41.2 Ross Lannon: Maxwell, is that something that you're sort of concerned about, you know, when it comes to how far to share? Like you've already mentioned, you know, you've started sharing aspects of personal elements of treatment, but I know whether you share like aspects of... You openly on your social media talk about your relationship, that you're in a relationship. Is that something that concerns you to share about in the future?

0:35:11.1 Maxwell Mcknight: I do share quite a lot of stuff like that. I don't really go into too much detail, it does kind of scare me to share into too much detail. Like I'll be sitting there with the post in my drafts wondering if I should actually post it or not. [chuckle] But it does worry me sometimes. And like some of the comments... Like I don't really have any bad DMs or anything like that. But I do get some silly people going, "You're like Hot Wheels or something like that", which I got quite a lot, but I just delete them and move on. And it's their problem, not mine. That's just how I view it.

0:35:56.9 Ross Lannon: Yeah, I think so. I think between you guys today, we've sort of raised some really important points. And similarly as well, the comments that I've received, people often think if you've got a disability, they have a right of way to ask you really intrusive questions.

0:36:12.4 Maxwell Mcknight: Yeah. Yeah.

0:36:15.8 Sandie Roberts: They do. Yeah.

0:36:17.1 Ross Lannon: Literally. I don't know if it was yesterday or potentially the day before, obviously nothing to the level that you've had Sandie. Luckily, my comments haven't been of a sexual nature or anything like that. But like this guy messaging me and he was asking questions about disability. And at first you think, "Okay, I'm being friendly, I'm engaging in a little bit of conversation". But then you know when it crosses a level or a line and then it's like, "No, I'm not comfortable answering this level of personal question", or you're now asking for personal, really personal information or like straight away you're like, well, I've got a disability as well. What's your number? And it's like, "No, it doesn't work like that".

0:36:58.5 Ross Lannon: I get a lot of stuff like that about my relationship, you know, they won't even know me. And they'll come up and ask like very personal questions about me and my girlfriend. And I'm like, "You don't even know me, you should probably talk a bit first before you start going into that much detail. And even then I wouldn't share anyway. So it's quite, yeah.

0:37:22.8 Sandie Roberts: Yeah, you're right. It's this whole... As soon as somebody sees you disabled, they literally feel like they have a right to know the most intimate details of your life. And I don't know why, I don't know why that is. I think it's partly this entire culture of they've grown up seeing intimacy across everything that we see to do with charities and stuff. I think it's possibly to do with that, that to get anything to do... Everything to do with disabled people, there's always... Here's their story to go with it. So it kind of twinned. But yeah, I don't like that either.

0:38:06.9 Ross Lannon: Let's sort of steer away from the negative stuff. Now, I think we've covered that enough, I think people know the territory that comes with it. On a more positive note, there are so many benefits to a career in social media, and not just financially, I think that's something that obviously we can touch on because it's important, sometimes people are scared, I'm not asking for bank account figures here or anything. But like, it can be a good little earner for people. And it really can, and Sandy, I think it's coming to you because like you said, you do this as your sort of full time career. At what stage did you like sort of realise that actually, financially, this is really working for you? And how did you get to that point of gaining your following? Because, you know, you have a great following.

0:39:06.6 Sandie Roberts: I think... Well, I didn't really have any other options. I was trying to think about, "Okay, I need to get a job, I need to earn some money". And I had a chat with a career coach. And she said, "Let's just like scrap everything else. And let's just make you the business". And I said, "Really?" She said, "Yeah, you're amazing". And I said, "Okay", let's do that then. And so it was partly that, and partly a couple of things. I don't know how this is going to come out. But I heard some people saying about they had a job, and how many hours they were working, and how much they were getting paid to do that job. And I just thought, I don't have the energy in me, or, I couldn't work that many hours. And I'd be heartbroken to think that at the end of that amount of hours, I'd have that amount of money, when I know I could just do two posts, and I could get that much money. [chuckle] And I know I've got to work really hard for it. But I can pace myself, I'm in control of it.

0:40:15.2 Sandie Roberts: And the... It's my expertise, because I've got a background in marketing, and I've got an illustration degree, and I've got a lifetime of creative expertise that's brought me to where I am now. And so it's not... The way you calculate your fee is not based on an hourly rate. It's very, very different. So you are you are able to charge differently. It's a much more validating way of earning money, rather than just, "I've worked X amount of hours, and that's my hourly rate. Especially when it's manual labor thinking of working in a supermarket or something, which for me, would be absolute torture, I would be... I can't imagine anything worse, it would kill me, I think people that do that are so amazing to do that kind of job. I know that it's not as taxing in some ways. But for me, that would be incredibly difficult. So I think when when you look at it, you have to start small, but you can scale it, if you're good at it, you might start out at charging 30 pounds for a post, let's just say, if you've got a very small following, like I said, first of all, you have to start out with not charging anything, that's just the way of it, you just get you, you get the product in return. I will say if anyone's listening, and they just decided to kind of run with this idea, if you're gifted something, no one should be demanding any content in return.

0:42:00.3 Sandie Roberts: It's not industry practice, kind of illegal, not quite, but it's almost illegal for them to demand content in return. They can say that we would like content in return, but it's not... Yeah, I'm sure you guys know what I'm talking about. So that's great. I mean, don't say no to that when you're starting out because we all have to be taking photos of something, taking video of something. But I used to buy stuff, shoot it and then send it back to the store. We all did that as well, you know, because there wasn't any other way for me to get the content. So get your content, be creative. And then when you start out, you have to charge small amounts of money. And it's difficult because there's no set figure, because it depends on so much not just on how many followers you've got, but more on your... What's your engagement rate? And it can be very tricky. Again, I'm happy for anyone to email me if they want any help with any pricing stuff. But if you do well at it, you can earn, you know, so much money from one post that other people might earn them, spend a month. They might spend a month working and you just have to do one post.

0:43:13.2 Ross Lannon: It is a really sort of lucrative industry. I think if you use it to your advantage...

0:43:17.9 Sandie Roberts: Can be, can be.

0:43:20.8 Ross Lannon: It really can.

0:43:21.8 Sandie Roberts: Yes.

0:43:22.8 Ross Lannon: And you said some really great tips there Sandie, for people. So that's really, really helpful. Maxwell, sort of similar to you. Do you have as a... I'm going to use the word entrepreneur again, you know.

0:43:34.0 Maxwell Mcknight: Yeah.

0:43:34.6 Ross Lannon: Up and coming here, a future star on our hands. Have you got any sort of top tips because you've sort of taken that leap as well, you've started your business. What top tips do you have for somebody who's thinking of joining this industry?

0:43:48.7 Maxwell Mcknight: I would just say, you know, do it and get out there. I mean, when I created mine, because I saw all my friends doing all these, you know, jobs and these extra things. And I didn't really have the money, I was, you know, a student. And, you just got to get out there and, and do it. I created a website I found... Well, I love editing now, I didn't like editing before, but I kind of got into it. I got all of the software and I found actually like quite a lot of different hobbies from it. And because I found all these hobbies from it, I now enjoy doing it. So yeah, that would be my advice. Just, just make the jump and do it.

0:44:33.3 Ross Lannon: I love that. I think for me personally as well, I think if that passion and that enjoyment isn't there, then you're in it for the wrong, the wrong reason. I think something for me is, I love that positive feedback and, you know, we all want to, it's nice to hear positive feedback, but when it's, especially when you're creating disability specific content, you know, I've shared things before and I've had sort of parents reach out to me and I think of it if they've got young kids who with a disability and they've seen me driving an accessible speedboat or they've seen me... I'm sailing down the wall or whatever I do, any sort of challenge. And, it's... I like the fact that they can almost see that as potentially in their child's future. And again, that comes down to the stigmas of disability of breaking down those negative stereotypes and actually show, "This is what we can do. We can still live a fulfilling life.

0:45:34.9 Ross Lannon: We can still earn money, have fun". And I think for me, that's why I do what I do because I love that, to be able to sort of almost inspire somebody else, particularly the younger ones. And I don't know if that's the same for you guys as well. Do you sort of feel in a... I don't want to use the word position of power, but you know, when you have a platform, you almost are seen in some sense as a role model to some. Is that something you can relate to Sandie? Do you like that positive feedback?

0:46:12.3 Sandie Roberts: I love getting messages from people who say, "I saw you do XYZ and it really helped me go out in my wheelchair for the first time. Or it really helped me wear a dress because I've just been wearing cover up clothes because I've been hating my body or, you know, I felt confident in myself". I love it, it makes my day or my week. It's what is the whole reason I do what I do, because it's all about helping people. When I became sick and I lost myself, really, I was an empty vacuum hole of a person. I wanted to kind of rebuild myself and find a purpose that matters. And when I did, it was about I need, I'm here, I'm still here. And it needs to be because I want to turn my experiences to helping people. And it validates every day, "This is why I'm doing it. I'm on the right track". But I wanted to add to what Maxwell said about just do it, because I think that is such a lovely sentiment and it can hold us back so much. When we think, "But I'm not good enough. I'm not good enough".

0:47:23.4 Sandie Roberts: Just start, even if it's starting badly, just start and go, "This is my starting point, because I'm going to build on this and I'm going to get better". Just post and just... I always say, I'm starting badly when I start something. "I'm starting badly, today is the day I'm starting badly". And it's my little thing I say, just so that I know I can, I'm going to improve, but I can't improve if I don't start. Start badly, start badly.

[laughter]

0:47:52.2 Ross Lannon: I like that. I like that a lot. And finally, guys, sort of closing statement from you each really. Maxwell, if I come to you first, an opportunity to obviously promote your awareness page and just sort of a closing statement in terms of disability, social media as a career.

0:48:17.0 Maxwell Mcknight: Yeah. So everyone can follow me on Instagram, @maxwellmknight, where I post, you know, my life, how it's going, my journey. And really, I'll just say to anyone with a disability, you know, it's okay to share it. I think the more people we can get with disabilities sharing their experiences, the more... Especially for younger people, it's kind of normalized, that it is okay to be different and to have a disability. And all these people that didn't know I was hoisted and stuff like that, you know, like a hoist is a very new thing for quite a lot of people outside of, the disabled world. So yeah.

0:49:07.5 Ross Lannon: Brilliant. And Sandie, same to you. Sort of where can people find you and what sort of closing advice would you have?

0:49:16.9 Sandie Roberts: They can find me on Instagram and YouTube on, @the_searchforsilverlinings. And also I've got Roll With Style UK, which is a new venture, which is fashion and style guidance for wheelchair users, which I'm super excited about. Yeah, it's a new business venture. So yeah, do get onto that one. And just yeah, my closing sort of wish is stay safe but go for it. Enjoy it, if it interests you in the slightest little bit, pull on that thread and get creative and see where it leads you. Because... Don't have an end goal, just just put on the thread and go and just feel your way. Just see what happens, because as long as you're happy, just experiment and enjoy and see what happens because it's made me really, really happy.

0:50:11.0 Ross Lannon: That's really, really important. Happiness, that's all we all want at the end of the day, isn't it? And much, just to sort of close myself as well. I think it's... Loved chatting with you guys today. You've really sort of given some great advice and it's just getting the word out there that actually if someone's out there struggling with employment, you know, social media is a viable option and you can work it to your own advantage. And it's a really positive opportunity out there. So, yeah, we really hope you've enjoyed this episode of the podcast. Thank you for listening. And thank you Maxwell and Sandie for sort of chatting with me and sharing your stories. It is very much appreciated.

0:50:57.3 Maxwell Mcknight: Thank you.

0:51:01.9 Sandie Roberts: Thank you for having me.

0:51:09.3 Ross Lannon: Goodbye.

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0:51:10.3 Ross Lannon: You've been listening to the Living With SMA podcast. Well, here you can join us again next time, but in the mean time don't forget to like and subscribe so you don't miss an episode. You can find out more at our website @smauk.org.uk.