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Living With SMA
Living With SMA
Ep 32 Keep your goals away from the trolls
Welcome to a thought-provoking and eye-opening episode of our podcast, where we delve into the world of online trolling and how it can impact individuals striving to achieve their goals. In this episode, we have the privilege of speaking with the resilient and inspiring Alex Dacy, who shares her incredible journey of handling ruthless online trolling while pursuing her dreams.
Online trolling has become an unfortunate reality in today's digital age, where anonymity often fuels cruelty. Join us as we uncover the harsh realities of cyberbullying and the toll it can take on one's mental health and motivation. We'll explore the stories of relentless online attacks, yet she emerged stronger and more determined than ever.
Our guest, Alex, has not only confronted online trolls head-on but has also turned her experiences into a source of empowerment and advocacy. She'll reveal her strategies for safeguarding her goals and mental well-being in the face of adversity. From managing social media platforms to finding support networks, Alex's insights are invaluable for anyone navigating the online landscape.
This episode is a call to action against the toxic culture of trolling, emphasizing the importance of resilience, self-care, and building a positive digital community. It's a testament to the indomitable human spirit that refuses to be silenced by negativity.
Tune in now and join us for a candid and empowering conversation with Alex Dacy as we explore the world of online trolling and the strength it takes to rise above it.
#Resilience #DownToTrolling #Positivity #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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If you do have any questions for Becca or Ellie and the team or would like to participate in any of our podcasts please email luis.castro@smauk.org.uk
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.
One, two, three, four. 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. Let us know what you think. From all the team at SMA UK, thank you for listening. Three, two, one. Hello everyone and welcome back to a brand new episode of the Living with SMA podcast. If you are new around here, firstly, welcome. Thank you so much for joining us today. We like to think of this podcast as a safe space for people to come on, share their stories, and discuss a whole range of different disability related subjects. So we have a very special guest today who I'm very excited to talk to. But before I introduce her, let me just go through the general introductions before we get onto the main topic of event. 'Cause we do like to discuss topics on this podcast. Some are a little bit more lighthearted than others, but we think it's equally as important to discuss the hard hitting matters as well. So I'll introduce myself to start with. My name is Ross Lannon. I'm 29 years old and I'm from Cornwall in the UK. I have SMA Type 3 and I'm a lifestyle and disability blogger. I run a website called A Life on Wheels, and I'm also a radio host within my local area. Now I am very excited to introduce my guest who is joining me today. I'm sure many of you will recognize her face from the online community already. So yes, it's very exciting to be joined, by none other than disability activist and all round troublemaker, Alex Dacy, also known by the name "Wheelchair Rapunzel". Alex, thank you so much for joining us across the pond today. I love it. Thank you for having me. I'm so excited. Brilliant stuff. Now I've given you a little bit of an introduction there, but I'm sure you can do a much better job of it yourself. So can you tell us a little bit about you, give us an intro to who you are and where you're from and what you get up to? Absolutely. I mean, I think you kind of summed it up when you said troublemaker. I think enough said there. I'm kidding. Yeah. I'm Alex Dacy and I'm a new mom. I have the same thing as you, SMA, but I have Type 2. I'm 29 years old as well, and I am originally from Chicago. I have a bachelor's degree, but not many people know that because I am more well known for my social media presence. And I started creating content online about six years ago now, and I've been doing it full time for the past five or six years. And it has had its ups and its downs and I've done everything from modeling, creating, writing, public speaking. So I've kind of done it all, but my main kind of bread and butter is just being a creator. Fantastic. You are definitely a very busy lady who's booked and busy, which is is good to see. So the topic of conversation and the main reason we have you here today is because we are talking about a very important issue, which has probably affected quite a lot of us within the disability community over the years. We're talking about online trolling, something that you know only too often. Just to set the scene here for you, obviously the scale of your platform is so big. I've got got some numbers here for anybody who is new to your work. You have a following of over 1.2 million on TikTok, just under 500K on Facebook and just under 300K on Instagram. So the audience that you are reaching is obviously a big number and as I'm sure there are many pros to reaching such a wide amount of people, there's also a very negative side of it, isn't that? Oh yeah, absolutely. I mean I receive I would say hundreds of hate comments daily and it obviously always wasn't like that when I first started doing social media and I had a much smaller presence. But as you grow, especially on TikTok, when you get your videos virals, reaching people that don't even necessarily follow you and people that you know, this is the first thing that they're being exposed to. So if they don't like that video or if they find something wrong with it, they're gonna leave their hate comments. And I think your main thing about TikTok that is awful is that I feel like people would compete for the top hate comment, because then that comment receives a bunch of likes and it's like the top comment and it's like, oh, well they have a top spot in the comment session. But, I think, TikTok has received the most hate on for sure just because of how wide the range is of the reach of the videos. But yeah, I received lots of hate comments for sure. So I kind of wanna start really by taking it back to the very beginning. You obviously started out by posting videos, blogs and content online. How did you get to this stage, do you think, of becoming one of the most followed disabled creators out there? I think a lot of it is just accident and timing and I would like to say a little bit of maybe my skills in marketing, 'cause at the end of the day, all social media really is knowing how to market yourself. And I wouldn't say that that was my goal when I first started, wasn't really to build a brand or market myself. It was more to have an outlet to express myself and to feel heard and seen. As we know, disabled people deserve that. We deserve to feel seen, and many times in society we really aren't. So what kind of kept me going with it was this kind of community validation and just sense of community I felt from sharing what it's like to live my life as a disabled person. And then I kind of figured out, oh, wow, I can make a career out of this and brand myself. And once I did that, I kind of just started growing this platform and it's just been growing and growing and I've had amazing opportunities and just so many people I've connected with that have been amazing. It's been such a wild journey. And once you start kind of gaining that growth and gaining the insights into what it takes to be a big creator or gain a platform, gain an audience, you have tools there, you can keep going with it and keep growing and growing your brand. And I'm an entrepreneur at heart, so the bigger the audience, the more opportunities you're gonna have to pursue kind of entrepreneurial dreams that you have. So, I don't know, I think it's just a mixture of live marketing and people being interested by kind of my content, which is all over the place. I feel like I can share very wholesome videos. I can share, in the same token, very raunchy videos. I've shared me at strip clubs and I've also shared me playing with my daughter. It's just kind of I feel like all encompassing and people it makes them a bit uncomfortable, which probably at a psychology level is intriguing. And maybe that's why I've gained the platforms I have, because people are curious and they're like, we don't know what we're going to get from Alex today. Yeah. And do you think because from an outsider's point of view, I don't know if this is a fair comment to make, but is there a difference between wheelchair Rapunzel the brand and Alex Dacy, the human as such? Does it actually affect you or 'cause speaking to you now, you seem quite relaxed about it, you seem quite like you handle it very well. I mean, I would say Alex Dacy, obviously not many people know me except for people in my circle and the online community. And people that see my content are gonna gain a perspective of me based on the content that I put out. But at the end of the day, when you do social media as a living, I think you have to have this understanding that you are who you are and the people in your life that care about you and love you are the ones that know who you are and you know who you are. And you will fall apart if you kind of attach your whole identity to kind of your online presence or what people perceive about you. And at the end of the day, it's like you could show someone the same photo and everyone is gonna end up interpreting it differently. And so I kind of try to look at it like that. And otherwise, if I didn't, I would lose my sanity in doing this with all the horrible things.... That are doing me every day. So I try to keep just a positive outlook on it, which some days that's very difficult. But like I said, the people in my life that love me and care about me, that's truly the opinions that I really do care about and put stock into. Definitely. And kind of at what stage did you realize in your online career that you were starting to get so much hate? Because you kind of obviously prior to this interview, I like to do my research. I went to your pages and you go straight to the comments. And just for people listening today, just to set the tone a little bit, we're not just talking about the odd comment where someone says that they don't like your dress or something minor. We're talking quite hard hitting deep personal attacks on your videos and your images. So, yeah. At what stage did you start receiving so much? I would say the peak of my hate comment career. I wouldn't like to call it that, but it kind of is 'cause it's would have been right when I announced my pregnancy, and it kind of started when I was sharing more about me and my boyfriend and our relationship, but it really, really took off once I announced the pregnancy and I started sharing about it. Yeah, it just, it really took off. And I just started receiving so much hate, so much negativity. And it was very hard because people were telling me,"You're disabled. You shouldn't be a mother. Your daughter is gonna come out mangled because you're disabled. You're so selfish for choosing to have a child." Just horrible, horrible things. And yeah, that's really... That's when my content also started receiving the most viewership was when I announced my pregnancy because people were obviously very curious about it. Someone with SMA having a baby. And so I think the more viewership I had, the more hate I had as well. It's almost like a vicious circle, isn't it? Because on one hand, as a content creator, you're always striving to grow your audience and have those viral moments, but on the other hand, with that comes so much negativity that must be incredibly hard to stomach. What effect... Yeah, sorry, carry on. Oh, I was going to say, especially, when I was pregnant and I had to get off the treatment for SMA and I was in a very vulnerable state, being a first time pregnant woman, and all the hormones that go along with that. And then on top of that, feeling so much joy about my pregnancy and what my body is allowing me to do, despite everyone telling me that I shouldn't do it, that I can do it, including medical professionals and then receiving the hate on top of it was very, very taxing. But I wanted to show people that this is my journey and there's nothing to be ashamed about. Yeah. And what effect did that, or does that continue to have on you and sort of your mental health? Because obviously, in particular, during pregnancy times when hormones are so tightened. Yes. What effect did this have on you? My mental health definitely has not been the best. The pregnancy, just the postpartum depression, I definitely experienced and I was straying away from posting and didn't really post too much, but would throw out some content here and there, but it wasn't my same kind of, wow, this is a great idea. I really wanna get this out and this is gonna be really impactful. I kind of stopped doing that because it was taking a toll on my mental health just posting and then seeing the immediate responses. And it's taking a toll for sure. And just now I'm about four months postpartum and I'm just starting to kind of get back to the hormones being leveled off and me being able to kind of cope with this situation. But I've had a lot of trauma that I'm still processing, including the things that are said to me on the daily basis with the pregnancy and being a mother, a disabled mother. And then also, if you've done your research, I don't know if you know, but you have DCFS showing up at my door, questioning me and my boyfriend being able to care for my daughter. And that was all from TikTok trolls. And the state is at my house, potentially wanting to take my daughter from me. So there's still a lot of processing going out and healing and I'm trying to do that in the best way I know how. Yeah, exactly. It is intense and I think it's hard to imagine what it is trying to deal with that on top of all of life's of struggles in terms of disability as well. It's intense, and I think one of the main reasons I wanted to talk about this subject today was I had a recent experience myself. Obviously nothing to the levels of extreme that you've had, but I had a viral moment and whilst I thought, great, this is great for my platform, I was like, wow, I've never experienced this level of negative comments as well. And it really got me thinking, when I start looking at other disabled creators and I go straight to their comments, I'm like, this is becoming more common. You look at people and they are getting a lot of hate. And I didn't know how to deal with it at the time. I was getting... And as much as people tell you, "Don't read it, don't take it to heart, don't worry about it," they don't know you. Right. Exactly. It's kind of impossible. It is. It really, it's... I mean it, you could say it, but it's not gonna happen. You're gonna read it, you're gonna internalize it and it's horrible. It doesn't matter how strong you are, how strong you are mentally, it's gonna affect you in some way for sure. Yeah. And how do you deal with it? Are there any sort of coping mechanisms? I know when I had my sort of moment, I literally, I took myself out for ice cream. I was like, if this isn't self care, I don't know what is. I need... I love that. Ice cream. How do you deal with that? I the ice cream moment, it was some great self care. I love that. Honestly, I would say mine is somewhat similar. I kind of find solace in working. I just relaunched my apparel brand and it's sometimes hard to work as a creator because my life like the hate comments that come with that, but something that where I kind of feel like, wow, this is just like my brand and like, it doesn't so much have to do with my personal life or anything like that. It's kind of just like me creating something for the public. So me working on my apparel line, designs, marketing, my website, building that really brings me solace. I love doing it. It's a great hobby. And then also cooking, I love cooking, cooking heals the soul. So I kind of just try to take a step back from Instagram, TikTok and just build my designs, work on my website, kind of do things that aren't directly involved with social media and just talk to my boyfriend, hang out with my daughter and play with her. Honestly, she is my entire life and I'm so busy with her nowadays that it's honestly, I have to step away and do work. But she keeps me very occupied and brings me so much joy. So just the little things. Yeah, I like that. Taking a little step back and enjoying the little things in life. Very important. Because your brand as such has become so heavily associated with the hate, that's almost something you've become almost known for. How has that affected you in terms of your work? Because as much as you say you wanna throw yourself into work, I can only imagine this has affected certain brands wanting to work with you and other income opportunities. Oh yeah. No, it is has been an incredible journey. I can't get into like super duper specifics 'cause of like contracts and things, but the hate has affected my work opportunities. I have been dropped from brand deals, because of I have I think one of the biggest subreddit hate pages on Reddit, which is very, I would say very, very hard. My appearance is made fun of. I don't go on it anymore because when I was, I would cry every time I went on it because it is so far from the truth about me or my family. Just the other day, my friend sent me something where this Reddit page was saying that I'm editing my daughter's face when I post her, which I've never done. And this person is taking the time to screenshot everything I post and then draw a line as to where she thought I edited my daughter's face, which I have never done. It is wild. They make fun of my boyfriend and it is just horrible. And basically those trolls, I think they have upwards of 17,000 people that follow the page and it's all about me and my family and hating us and criticizing everything. And they, as soon as I get a brand deal, will send the brand this Google doc of outlining all these apparently horrible things I had done that made me unworthy to represent a brand and brands have dropped me because of it. My, it is on a huge scale then. It's obviously affecting you to that. I wanna play a bit of devil's advocate here. For the people that say your, it is your decision to share such personal aspects of your life, whether that's your relationship or whether it's your child, there are people out there who say, well, if you decide to share this personal stuff, you almost open yourself up for it. What do you say to the people who have that opinion? I think it's very nuanced because yes, I am choosing to put my life out there, share it, and in the same breath that is opening myself up for the public's opinion. But where I think everyone says influencers need to be held accountable. I 100% agree with that. But I think there's a difference between cancel culture, growth, accountability and this unforeseen kind of accountability that needs to be taken on behalf of people consuming the content. Because I don't think there is any excuse for someone to be hateful to another human being and that isn't holding someone accountable. That isn't right. And just because I'm sharing my life, I don't think should give people the right to be hateful. Yeah, I'm open to public's perception of myself, but I think what needs to be talked about more is the consumer taking their own accountability for the way that they're viewing the content and the messages that they're consciously choosing to type to another human being. And at any stage throughout your sort of online career so far, have you ever like considered changing the type of content that you post purely because of the backlash you get? Absolutely. I've posted all sorts of content and like I said, I would say like, I'm the disability creator wildcard because I'm known to be taboo. Like I said, you don't know what you're gonna get from me. Are you gonna get something that's about body confidence, sexuality, being a mom, being a party girl. I had this whole TikTok disabled party girl persona who I am for months. And people hated it. And it was just frustrating because it's like you see all these other party girl TikTokers that are praised, but then when a disabled girl is doing it, then it's like, oh, no, you shouldn't be doing that. That's gonna affect your medical condition, or you're trying to get attention. And it's like people that know me in my real life, I have been a party girl in my personal life. It wasn't for TikTok. Like these are things I was actually going out and doing and enjoying my life. And lately now that I've been a mother, I've strayed away from my typical body confidence post where I show that disabled bodies are sexy and worthy of intimacy because I'm wearing like this little bralette today and I wore this in the post recently and people are criticizing me saying I'm wearing like a bra, and underwear in public, or that I'm, by sexualizing myself if I'm wearing this with a photo of me and Ari, my daughter, that I'm sexualizing her. And so I found myself saying, "Hey, maybe I shouldn't wear this today because it's gonna be perceived badly", and I've never felt like that until I became a mom, and that's also something I'm still kind of digesting is, Hey... And my boyfriend's like "No. Wear that. You would wear it? Like if you want to wear that and you feel good in it, wear that" And I'm like, "You're right, you're right, okay." Yeah. It's really actually refreshing and interesting to hear you sort of say that and speak like that, 'cause obviously through a camera phone, you can only see so much into some of these lives, and obviously you come across as this badass businesswoman who almost comes across as if your words don't affect me, but deep down they do, and the fact that you're even questioning what is it gonna come across, like in this t shirt today, it is really interesting to hear. It is. I mean, it's something like before when I first started posting, like me and my lingerie kind of of with the messaging of, Hey, other women are doing this, other people are doing this on Instagram to show their body confidence and when I was doing it, it was very praised, it was very well received, it really empowering me to be on my body confidence journey and it's helped me a ton, but lately, if I post anything like that, it is not that well received at all, and it's made me kind of step back and be like, Well, because of a mom, I can't do body confidence type of content anymore, and that's been very conflicting and so I haven't really posted too much stuff like that, it's mostly about me and my daughter just... I haven't really been posting too much content on very like my bread and butter body confidence just because of how it's been received and people saying, I'm trying too hard, or I shouldn't be wearing that, or again, I'm being a bad, kind of role model for my daughter by wearing these certain things. Yeah, it's very conflicting. Yeah. Absolutely, I think that's probably why people see you as this almost controversial figure, because on one hand, they go to your page and yeah, it's a family page where you're posting home content of you and your child, and then next minute, if there is the body confidence post, it is that change of content where you can kind of, on one hand, think, okay fair enough, I can see people's points of the two different scales of things, but ultimately it is still your page and it's your life, so nothing warrants nasty comments. As long as you're not hurting anybody. There is no excuse, essentially. Why is it so important for you to push forward and keep raising awareness with your activism work and things like this? I think for me, activism and sharing my life and just opening people's eyes in a very simplistic way of, Hey, disabled people do things, they have families, they love, they have babies, they do the things, they go to barbecues, they celebrate 4th of July instead of this narrative of that many people have that aren't very exposed to disability, that disabled people are hermits, or they kind of just live at home with their parents and not saying there's anything wrong with that, but those stereotypical things that we think about disabled folks, and that is what keeps me going is even if I impact a few people and broaden their kind of mindset on disability or in the same breath making a young disabled person and say," Hey, look at this person. She is able to have a career, have a boyfriend, have a child and support herself," that motivates them in some sort of way. I love that because when I was young, I didn't really have someone like that with a disability that I can look up to or say, "Hey, they're doing it, so maybe I am able to do that too. As corny as that sounds, that is what keeps me going for sure, and I also just have a very passionate love for creating content. I love it. It's just once it's posted, that's when it's like, oh, but the creating part I love. Yeah, no, I'm very much the same. I think the whole stereotype when it comes to people with disabilities, don't get me wrong, everybody's situation is different, and I appreciate that we are all different, and what works for some people doesn't always work for others, and it purely depends on your situation and your health and things like that, but ultimately, yes, I think I'm all about promoting disability in a positive light because there is so much negativity out there and the assumptions that we can't do certain things. It drives me wild. It really does. So we're on the same page there. Let's move this onto a more positive note now, because it's not all negative. You have got a lot of support out there as well. It's not all doom and gloom. Talk me through future aspirations. What's coming up for you? What's next? Where are we gonna see you? Absolutely. I have a lot of plans. I have a lot of business ideas and people in my circle that wanna be on board and see these businesses flourish. And I would love to still post content, obviously, but I definitely wanna focus more on my entrepreneurial side. Especially I just want a fresh start and all this hate made me, it's the universe's way of saying, Hey, maybe try to pivot and try something new. And while I'm still always gonna be on TikTok, I'm gonna be on Instagram, but I really wanna start focusing on these businesses that I have been having in the works for years that I'm just left on the back burner. I wanna start a consulting agency that is gonna focus on disabled creators. I want to also focus on my apparel business. So I just wanna pivot and do more stuff that's more behind the scenes, but still is gonna be able for the public to be involved in and create more community. And like I said, I'm still gonna be on everything, but I wanna start tapping more into that area of my career and my aspiration. So yeah, I think that's gonna be great. I'm excited. I like it. It sounds good. And I think just on a final note, it's quite ironic, I think that we're here today to talk about online hate and trolling. And probably this podcast in itself is gonna get some online hate and trolling for whatever reason. Oh yeah. The minute that I share this, you'll have all the Redditors commenting, so hopefully it boosts the podcast episode, even if it's with the hate. I'm like, you know what, y'all are boosting me and the algorithm. So I guess there's something good that's coming out of it. Give us a final message to all those that... We'll have a message for the ones that are hating you, but also the ones that are supporting you as well. Keep it clean, but what are you saying to the people that are hating today? I would say to the people that are hating or actively involved in the Reddit or hate comments, that you never truly know what's going on in someone's life and try to have empathy. Just because someone is a creator doesn't mean that we don't have feelings and that we're not human, we're still humans and we have families and we have feelings. And to just try to step back and maybe just shift your perspective to putting yourself in that person's shoes. And for a message to anyone that supports me over all these years, thank you from the bottom of my heart and I hope that following my journey, my content brings you joy, brings you education and that you are the reason that I continue to post content amid all the horrible things that are said to me. So thank you. And I can't even express how much I appreciate that sense of community that my supporters bring to me. So it really really really helps. Yeah, there are definitely still some good eggs out there and, yeah, I think in a community like ours, we need to be uplifting each other more so than trying to tear each other down. So if we all take something away from this today is just to maybe think a little bit before you post something because you never know what somebody might be going through. And just be a little bit kinder. There's no harm in a little compliment every now and again. So hopefully we learn something from this today. We love that. More kindness, less hate for sure. Yes, exactly. Alex, for anyone who hasn't already followed you, a last little promotion for you, where can people find you and keep up to date with everything. On everything? Pretty much TikTok, Instagram are my mains, wheelchairrapunzel. I have a Facebook page, wheelchair Rapunzel. I have a YouTube channel that me and my boyfriend started that I'm trying to get more active on, the interabled couple. Hopefully you'll see some more content there, but yeah, wheelchair Rapunzel, find me there. Perfect stuff. Thank you so much for joining me today. It's been an absolute pleasure. I really appreciate you taking the time out and having a chat with us. And yeah, just good luck with everything you are up to and stop reading those comments. I know. Easier said than done, but you know, I'm trying and like I said, get cooking in the kitchen, play with Ari and step away from those comments and we're golden. So. We're good. And for anybody else out there, thank you Alex. And yes, for anyone else out there who may be struggling with some online hate, feel free to reach out to SMA UK. We are here to support you. And there are, like we said, many other good eggs within the disability community. I'm sure Alex and myself are more than happy to speak with you as well. So yes, look after yourself, everyone, take care and we will see you for another episode very soon. Goodbye. 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.