This week Peta is joined by Sandie Roberts. Sandie shares their empowering journey of navigating disability, battling online trolls, and finding resilience through mental health challenges. A story of triumph amidst adversity.
Connect with Sandie:
Sandie's New Instagram: https://www.instagram.com/therealsilverlinings/
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Peta [00:00:00] I would like to respectfully acknowledge the Wurundjeri and the Boonwurrung,people of the Kulin Nation of which I recalled the podcast today. And I pay my respects to both elders past and present, along with and especially to those in the First Nations communities who are disabled themselves. Before we get started today, I want to offer a trigger warning that this episode might not be for everyone. It's certainly not for children. Sandie and I had an amazing conversation. They were very generous in what we spoke about in this episode. But we do touch on the trolling that Sandie has experienced online. And as a result, mental health and suicide idealisation. So if that isn't right for you, please skip this one.
Peta [00:01:01] Hello and welcome to the I can't stand podcast. The podcast answering your questions on what life is like when you have a disability. My name's Peta. I have cerebral palsy and I'm your host this week. I have the amazing Sandie Roberts. Sandie is somebody that you might have seen on the Internet. That is for sure. They grew an amazing following, being a great disabled content creator and really expanding disability representation. But then it all went wrong. So without any further ado. He's Sandie Roberts.
Sandie [00:01:51] Hi there. I'm Sandie Roberts. I am a disability advocate and writer. My pronouns are they them. And I have several conditions and a full time wheelchair user. I have ehlers danlos syndrome and I also have functional neurological disorder.
Peta [00:02:10] Sandie, I've been so keen to talk to you for so long. I love what you do online and the representation that you bring to the disability community. Now I understand that your journey to becoming the person who you are today as far as your disabled identity is taken a little while. So what did you think life would be like being disabled?
Sandie [00:02:34] I was told from a very young age that I was destined for a wheelchair. And the way it was framed was this really it's like a prison sentence. You're going to end up in a wheelchair. Better get used to it. Live your life now. Very doom day. Kind of sentencing by doctors. My first stint in a wheelchair was when I was 15 and I spent about a year unable to walk. I wasn't diagnosed with ALS done last until fairly recently. So it was this mystery condition that I had. That's a very sort of formative age. And all I could see was everything I couldn't do. And I remember seeing people holding hands and I remember thinking, if I'm in a wheelchair, I can't hold hands. And that was a really integral moment. That moment informing how I believe my life would be in a wheelchair. It would be everything I couldn't do. And so from that moment forward, I decided I was not going to be in a wheelchair. I disconnected everything my body was telling me. And it wasn't helped because the medical profession that I was dealing with were also very dismissive of everything I was feeling. Unfortunately, I've had a lot of gaslighting and that it's been a really unfortunate experience that I've had. So I thought that being disabled would be a really bad negative experience. And it was my daughter that bought me my first walking stick in my 40s. That was so probably about ten years ago. She bought it for me and I only used it because she bought it and I wanted to not upset her. The first time I used it, I took it into the office with me and I felt like I had a big neon flashing sign above my head that said Stare at me. A lady came up to me in the office and she said to me, Oh, my nun's got that one. And I just stared at her. And then I said, Don't ever compare me to your nan. And I hated hated the idea of being labelled disabled. And it only changed when I had my stroke and that was in 2019, so very recently. And I became so disabled, so, so reliant upon a wheelchair that suddenly it stopped being this awful thing and became this chariot of freedom. And my entire attitude changed. I surrounded myself with the disability community. I educated myself. I found out what ableism was discovered. It was running through my veins rife. And doubts about curing myself of said disease. And changed. Changed my world. And now I'm the complete opposite. That.
Peta [00:05:53] I'm so pleased to hear you're rid of that disease or, you know, even even as somebody who was born with their disability, like I am, I still have idealism in me and I really want to recognise that. But you're right, it is totally a disease. And I'm so sorry that the medical professionals framed disability like that to you because it is seen still as a failure. And that is so wrong. It just so misinformed.
Sandie [00:06:23] Yeah. Yeah. It was so much focus on walking for me. You must walk. You mustn't give in those. The language that was used was was so ablest. I mean, if I'm completely honest, I absolutely believe that the way that my body disconnect evolved completely enabled my brain to create these this the the breeding ground for my functional neurological disorder. This whole lifetime of my body feeling things in me and convincing my brain that that was not a real sensation. That's not actually happening. I'm pushing myself so hard. You know, I'd go to work at 7:00 in the morning. I could literally get to my door at home 7:00 at night, and I would not be able to walk through the door. My daughter would have to help me through the door and I'd crawl up the stairs. I'm too weak to even eat food. And I would do that every day, five days a week. And then I spent the weekend in bed recovering, ready for my day again. And think that was perfectly okay because I wasn't ill enough not to go to work because I could still stand. It just beggars belief when I look back at it. The way that society thinks about health is so backwards. We we think about if you have a broken bone, then you rest your leg, but anything else, then you just keep going. You keep going. And even mental health, you know, you just push, push, push, push. We all are prone then to, you know, creating a breeding ground for functional neurological disorder to be triggered. But we don't know it. We don't know that that's happening. And it's such a shame. I will talk about that. So the cows come home. So I'll stop now.
Peta [00:08:32] Please don't. That's why you're here. I have to say, and I'm really interested to hear how you manage your mental health. Now that you do recognise your disability and you're okay to use mobility, aids and all the amazing things and freedoms that it can give us, Knowing how you were back then when you, quote unquote weren't disabled, how do you manage your health and your mental health today?
Sandie [00:08:59] Very, very differently. I'm a huge advocate of meditation, and I do that as often as possible. Often many times a day. Very recently come out publicly as genderfluid. And that's been a huge weight off of my shoulders. But there's been other things that have been happening, I think lack of medical support for my conditions, feeling so extremely isolated, extremely alone where I live. I don't have any in-person friends. I've got a lot of friends online and who live in London, but that's still a train ride away. I've got Long-covid as well. So when you are not well and you can't travel, you feel very cut off and isolated. I do a lot of breathwork, which has been proven to chemically change the structure of your brain like antidepressants can. For me, that works really well and I'm journaling as well. And that for me really helps. Disconnecting my thoughts from my body really helps if you can. Getting out into nature also really helps me, even if that's just looking at a tree and you know, its lowest mind is opening a window and just listening to the sound of the wind in the trees. That helps. And I've recently just started sort of cold water therapy, so that's really hard for me because I can't regulate my body temperature. But again, that's been really good. So I do lots of things that make me feel I'm in control. I think that's probably the underlying commonality. What am I doing that makes me feel in control rather than it happening to me? It's really easy to expect people to be happy all the time and to feel joyful all the time. I don't think that's human nature. I think that as humans, we go through ebbs and flows. And at my lowest point recently, which went on for probably about two years, I'll say it was it wasn't static, but it was kind of going down. And I can remember thinking, I remember what Joy feels like. I can remember driving in my car with the windows open and singing and feeling that lightness of spirit and that happiness in my chest and that smile on my face and looking at strangers and saying hi and people saying, How are you saying I'm good at actually? And instead everybody's saying to me, How are you? And saying, you know, I'm not okay? And thinking, do you actually want to know? Because I'm actually really shit. I feel like shit and I don't want to be here anymore. And then just saying, yeah, you know, so, so and wondering if I would ever feel that spark of joy again and just missing it. I just like a friend that died or something. Like I missed my old joyful self. But I didn't give up. I just kept looking for it, kept searching for it. Kept trying to find ways, hoping that I would find it. And. It turned out to be the fact that I wasn't being honest about my authentic self. I didn't know that, though. I didn't know that was what it was until I. Had a moment. Something happened. A very innocuous thing happened where I just reached my fuck it moment. I'm done. It was a really strange thing. It was just for the covering people pleaser who always puts everybody else first. I was just. I'm not doing that anymore. Wow. Oh, I'm done with that. And it was. It was like shedding skin. So I would really urge anybody who's listening and struggling to don't ever give up. Don't ever stop searching and just keep going and keep trying. Keep listening to yourself. Keep thinking about what it is that makes you happy and keep trying different things. Keep journaling, meditating, talking to people if you can. But if you've got nobody that you can talk to, talk to yourself, talk to your younger self, talk to your future self, and just keep looking for those breadcrumbs because I didn't know what my breakthrough was going to be. And it happened two years later and here I am, full of joy and spark. So yeah.
Peta [00:13:49] I really admire your strength. Like to. To live through that for so long. Like, good for you. Well done. So glad you're still here. Because you are such a bright light on Instagram. I'm very aware that you did receive a lot of trolling, and I'd love to talk to you about your decision to move away from your original account and how you feel now with your new account.
Sandie [00:14:16] Yeah, that was, I think, part of my healing, actually. I felt very trapped. So I'll explain a little bit what happened for the listeners. I built up my business account and was very known for body confidence in the disability community. I became a model for fashion and lingerie and swimwear brand, and there was there isn't a lot of midlife I disabled models. I have countless messages from people who've said that it's made a massive impact to them personally, changed their lives personally, and even kickstarted other people's careers. So I knew I was doing something really good, but it had a secondary impact on me personally because there isn't a dark side to humanity of of people who fetishise disabled people for sexual gratification. And they latched on to me. And unfortunately, once they found me, I got advertised, if you want to call it that, in many groups and off, on and off social media, within the dark web and all kinds of places. It was it was a really difficult experience for me. The first time it happened was in 2020, I think. Yes, 2020 November 2020. So three years ago. And they were flooding in a thousand an hour and following me. And I couldn't block them fast enough. As quick as I was blocking and removing them, there was hundreds more come in. When you do that kind of mass blocking on your Instagram account, it hugely impacts your business because Instagram thinks you're a bot or that something awful is going on in your account. It shadow bans you. It does all sorts of things. So suddenly my business account where I was doing really well just got completely shut down. I started receiving strange messages. The worst one was a photograph of a nearby where I lived. Does this look familiar? I never posted my address. I've never said exactly where I lived, but I was just so scared I wouldn't go out my house and I became really felt really vulnerable. I have a history of sexual abuse in my past. I, I felt I felt like I was in a room of thousands of men and I was suffocating. I felt so incredibly vulnerable. I think these people have clearly had something terrible happened to them in their lives and to make them feel powerful. They need somebody to make somebody feel really helpless. For me, it helps me feel a little bit better to think of them as ill a sick. I tried to reach out to the social media platforms for protection, and from their perspective, there was nothing wrong happening. It was just I was receiving a lot of followers. So from their perspective, there was no problem. And from the messaging, there was protection you can put in place. You can put certain settings in place to stop yourself receiving horrible messages, which I didn't know originally, but then I put in place. But with regards to the followers, you can't stop them following you and the only thing you can do is put your account to private will. That doesn't work when you're a business account. When you are a business, there is not enough protection when you have got the wrong type of followers. And so I was told to just leave them and let them follow me. I did that and I ended up having so many on my account that it built up. So I ended up having a demographic of about 7% female and the rest were men. I couldn't bear it, so I removed them all. I removed 65,000 men. And not just men. I was careful. I looked at them as a specific type of man, a specific type of account. I would look at each one. We'd look at a man somebody else went through. It took us two weeks full time, both of us doing it, and we removed them. I stopped doing the lingerie modelling and I was doing disability advocacy, mental health and makeup, and that was all I was doing. And the insights were showing that it was showing my content to just men, and I didn't understand it. So I then spent the next year trying to build the account back up. And it just kept showing it to men. And if I did anything that was to do with fashion, it didn't have to be lingerie. It was just had to be me sat in my wheel chair. They would just flood messages, comments and all the likes. And if I did a life, it was just vulgar. So eventually and not that long ago now, about three months ago, I got an agency to come and say, I need you to help me. This is my livelihood. I'm losing work. And also it's really affecting my mental health and I need my business to work. What do I do? And they took one look at it and said, you are never going to make this account work because the algorithm thinks they are your audience and it's not going to. We learn it because it's happened too much and too long. You have to start again. I took that opportunity to start again. I won't be able to do the body confidence work, which is I've had so many messages of people saying, I'm so sad that you're not doing this because you were the one we missed, that we needed that from you. And I can't do that. It will all just happen again.
Peta [00:20:44] On to brighter things. I would love to hear what you hope your future holds and what you're planning for the next phase of you.
Sandie [00:20:53] Oh, this is exciting. I have got something very exciting to talk about. Please. You know, I mean, obviously I've got my new account, which is growing. But aside from that, I am launching. It's not ready. I'm not ready, but I'm launching it anyway. Because who who's got time to wait for these things? We just got to live life. I am launching something called the Shine Academy, which is an online social hub and learning resource primarily for the disability community. But anybody who feels like their lack of confidence is getting in the way of them living their best life. So it's going to be the most incredible place to come and bolster yourself, to meet people like you, to make friends, to to improve your social circle. I'm super, super, super excited. I'm going to have guests come on and give talks and stuff, and I'm hoping that it will really help people in all areas of life, in their social life, work, confidence, mental health, confidence, every area of confidence, and then helps them just feel that they are their best selves. I don't want anyone to feel as lost and alone as I did when I first became disabled. I just felt like a little tiny speck of dust in the middle of nowhere, and it was just horrendous. I don't want that for anyone. I want them to know there's a place that you can go if that happens to you, where you can belong and you'll be surrounded by people who will love you.
Peta [00:22:40] What a beautifully positive thing to do. I love that. I have to ask, where did you get your self-confidence?
Sandie [00:22:48] Me? Because I wasn't a confident person at all before. If you'd met me 15 years ago when I was, I was married to a very bad person. I was a shell of a human being. I was, like, a little mousy, terrified to put a step wrong. Luckily, I escaped that situation and rebuilt myself from the inside out and decided that this life deserved to shine and shine Academy, which is where it's got its name. Because I really I really decided that I didn't want to waste the breath that I had in my body, and I wanted to do something with the life force that I had. I just feel like this spark is inside of me and it's destined for something. And that too, In order to reach the people that I need to, I need to have the confidence to stand up and speak about it.
Peta [00:23:55] If there was one thing that you wish people better understood about living with disability, what would it be?
Sandie [00:24:02] That it can be the best thing that ever happened to you. Because it has been for me. I am a much better person than I ever was before. I've met some of the most wonderful people. This community is incredible and it teaches you so much about yourself and the world.
Peta [00:24:25] Thank you for listening to this week's episode. I hope you enjoyed it. If you did, can I encourage you to leave a writing interview? Wherever you listen to your podcast or share the podcast with a friend, it'll help more people find the podcast. This is the last episode for 2023. On a personal note, thank you all so much for listening. Whether you've listened to just one episode, this episode, or you're a loyal listener, that changing every Tuesday. Thank you so much. I've thoroughly enjoyed this rollercoaster of a year and I'm looking forward to 2024. So until next year. Have a good one, guys. Buying.