You might have noticed that disability related content is popping up on your feed more than usual. Peta and Psychologist Stephanie Fornasier discuss if all disability representation is a positive thing and how it is influencing how disability is seen in wider society.
This conversation was motivated after Peta listened to another podcast called Honestly, where disability representation online, is discussed in at times hurtful and disempowering manner.
As a disabled person, Peta wanted to talk to psychologist Steph to see if her reactions were clouded by her personal experience or if in fact the perspectives on The Honestly podcast were as hurtful as she perceived them to be.
The account Steph mentioned, Hadley https://www.instagram.com/trulyhadley
The Instagram account called Stories About Autism where Dad James, shares his life with his Sons Jude and Tommy https://www.instagram.com/storiesaboutautism/
The Honestly Podcast: https://open.spotify.com/episode/2WvW8VnfzwIM155NcFXwe5
Connect with Stephanie:
Stephanie's Podcast PSYCHOCINEMATIC https://open.spotify.com/show/3SJrp3f0SE9eslEnvdDrNC
Follow Steph on Instagram: https://www.instagram.com/psychocinematicpodcast/
Connect with Peta:
Instagram: @petahooke
Website: www.icantstandpodcast.com
Email: icantstandpodcast@gmail.com
Episode Transcript:
Peta [00:00:00] Hello. Just a heads up. On this week's episode, Steph and I talk about some heavy topics. So if this episode isn't right for you right now, or you feel like you have to skip it, please do. In the meantime, I want to remind you that there's always a lifeline and they can be contacted on 13, 11, 14.
Peta [00:00:28] 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 is Peter. I have cerebral palsy and I'm your host. I listen to many podcasts, as you know, and I was listening to a podcast that I listen to every week. And they recommended a disability based podcast, which is quite rare for a mainstream podcast. So I thought, I've got to listen to that. So I did. But unfortunately it wasn't as empowering as I'd hoped it was for a podcast called Honestly. The host's name is Bobby Wace, and she had a guest on called Freddie DeBoer. Now, as you hear, as I introduce Steph, Freddie is a widely published author and has the lived experience of disability as far as mental health. But I found his perspectives really challenging to understand. So I wanted to know whether my gut feeling of how harmful Freddie sentiments felt to me were true. This was quite a wide ranging conversation with Steph and I'm pleased to say that we moved away from this podcast quite quickly in our conversation to speak about how social media as a whole is influencing the disability community, both in representation and also helping people realise that they themselves might have a disability.
Stephanie [00:02:25] My name is Stephanie Fornasier. I am a psychologist. I am a disability ally. And I work in the disability inclusion space and I have my own podcast, Psycho Cinematic, where we analyse depictions of mental illness and disability on popular films and TV shows.
Peta [00:02:44] I was on it a few months ago and I so enjoyed our conversation in and around how cerebral palsy is depicted in TV shows. Yeah, it was such a great chat. So anybody listening, I highly, highly encourage you guys to go and listen listen to Stephanie's podcast. It was excellent. I want to give you a bit of background on how we got here and why Stephanie is sitting here talking to you today. I was listening to another podcast, as I do at the end of their podcast. They recommended another podcast and I thought, Oh, it's in and around disability. They should definitely go listen to that. You might have heard of it. It's called Honestly. And the title for this particular episode was Does Glorifying Sickness Deter Healing? I started listening to it and I immediately felt. So offended that the more I listen to the episode, the more I thought, I know the perfect person to speak to regards to this. That's you, Steph, because you come from that clinical background that I don't have the expertise in. So I would really love. I love excited to get your perspective on what you thought of the episode. For those of you who haven't listened to the Honestly podcast, the foundation of the conversation between the host and Freddie DeBoer was the discussion of how disability is presented in 2022 and on social media, in and around the prevalence of how people present and how it's communicated to the wider world.
Stephanie [00:04:30] Well, it's funny because when you told me your idea, I was so excited because I love to listen and I watch things and it felt like payback for making you have to watch a special.
Peta [00:04:42] She didn't particularly.
Stephanie [00:04:43] Enjoy. I was like, Peter, what are you.
Peta [00:04:45] Doing to me?
Stephanie [00:04:48] Because I also felt extremely uncomfortable and upset while listening to it from the very beginning. It sounds like the concept of the podcast is to have some of those difficult conversations that people don't always want to hear or have some maybe controversial opinions shared. Having said that, the guest that they had, Freddie Boer, he's quite well published on the Internet. I ended up going down a bit of a Google hole. He's someone with bipolar, so he's got a little bit of understanding of what it's like to have a disability of some kind of mental illness. I think it's still reasonable to disagree with some of his opinions despite his lived experience and some of them I found really offensive.
Peta [00:05:38] As someone who has positive mental health, and I've never struggled with my mental health, I never know how to approach people's perspectives who had the lived experience? Because I'm like, you know, I don't understand how difficult it can be. And I don't want to discount his perspective because I have no background and understanding. So that's why I wanted to speak to someone like you who could bring a little bit more clarity to how we approach this as the disability community. There seems to be, I won't say trend, but there seems to be a movement, particularly on social media and tea talk, with people really being proud and really illustrating their different disabilities.
Stephanie [00:06:21] It definitely seems to be a bit more prominent on Tik Tok particularly, and I know that's been happening for a while, particularly with what we now call dissociative identity disorder. And I think it's another example of young people and teenagers having an outlet with which to express themselves, which they've always looked for and sought after. Every every young person wants to be in a community, a group of people who get them and understand them. And adolescence is a very fraught time of trying to figure out your own identity. There's a lot of angst and a lot of feeling like you don't fit in, even if you do have a great group of friends. It's a common feeling as a teenager. But, you know, there is a link with anything. There's a likelihood that there might be a few teenagers that don't genuinely have that diagnosis. Maybe they have that sense of disconnection from reality or from themselves, or have really vivid imagination, and they might be portraying that on Tik Tok. My thing is though, because Freddy de Boer finds it very harmful. What's happening? It doesn't it doesn't particularly like any things that could be harmful. But there's a lot of videos portraying this and sharing without the tapes. I don't think it's that harmful personally. And like I said before, there's lots of examples of that. In the past, for example, I was talking to Hot Girls Theory the other day about Tumblr and there was a lot of self-harm and anorexic communities around Tumblr and that was sometimes promoting some of that self-harm behaviour or that binge eating, purging sort of behaviour. That to me could have and has some harmful effects on teenagers because there's often that contagion effect. But for me, if, you know, if one if a few of these people who are making these videos don't actually have the ID, I don't see how much harm that could potentially be causing that would outweigh the good of actually being able to express and share and show acceptance of some of these more on the sort of extreme end of of mental illnesses. I'm a bit.
Peta [00:08:39] Relieved that I feel the same way as you, Steph, because as somebody with a physical disability, I felt quite uncomfortable watching some of the tiktoks and thinking I'm not too sure if I believe this person that they do have this specific disability. And I don't want the nondisabled community to be put off or think that other people who do have disabilities, both obvious and invisible. Are performing disabilities.
Stephanie [00:09:16] Yeah that's that's a really good point. I did is one one example of that and and it's very hard to determine from the other side of the screen whether it's a genuine representation or not. Then there's the other side of the coin with things like ADHD and autism, which has become very popular as well on Tik Tok and I've read articles saying that it's quite trending, but I would also question whether that's the right word to use because I feel like social media has done so much good stuff for acceptance and for inclusion of disability, of mental illness in a way that we haven't quite had before. There's more exposure to different types of disability which are encouraging people to actually go and get a diagnosis if they feel that they. They make that criteria. And I think that's a really important caveat. If you're seeing a tick tock and you think I think that's me, I got I tickle those boxes. Go and talk to your GP. Go and get a referral to a psychologist and have that discussion like that. That's a very important thing to do. But I see now that there's more acceptance of these diagnoses, more people are going to get diagnosed because it's less of a it's sort of breaking the stigma at the same time.
Peta [00:10:38] Yeah, I agree with you, and I never want to say that representation is a bad thing. I think any form of representation is really powerful and it just goes to either people to even make people feel that they're part of a community, make them feel better, understood, make them understand themselves more, but also make the nondisabled community understand the prevalence of us exist, how common that comedy it is to have a disability.
Stephanie [00:11:11] And that's what this even though he's someone with bipolar, that's what this Freddy double sort of smacks of of not really understanding disability and the fluidity and that he sort of assumes it's static like you have it or you don't. Pooh poohing the gentrification quote unquote of disability. But I don't think it's gentrified. It's just exposing how many people actually live with disability.
Peta [00:11:37] I like what he said that disability is becoming gentrified. Oh, wait. I was just like, sorry. Excuse me.
Stephanie [00:11:43] What?
Peta [00:11:44] Like, since when is disability in society at any point seen really as a positive if you don't have a disability? You know.
Stephanie [00:11:54] Exactly. When he said that, I was like, oh, okay. I just want to like spit statistics at him about how badly people with disability are still treated to this day, that pretty much 50% or more people with disability are exposed to violence every year. And that is just a really offensive way to suggest that that's what's happening in this world at the moment.
Peta [00:12:19] You only have to look at the difficulties people have in gaining proper employment for good education.
Stephanie [00:12:26] Being able to get on the train or the.
Peta [00:12:27] Bus. Exactly like actual practical access. You know, I would love to think that disability is going to be gentrified one day, because to me, when something is gentrified, it's more likely to be equal to other things. So as. As far as. The idea of disability being gentrified. I don't think we're there and I hope one day we are. But I thought that statement was so off base.
Stephanie [00:12:57] 100% agree without acceptance and normalisation, which he also sort of hated the term of of disability and mental illness. We will never have inclusion because the society needs to accept and acknowledge disability for what it is and see it as part of the everyday in order to make accommodations and adjustments so that people with disability are living on the side of the same basis as everybody else.
Peta [00:13:26] Freddy said something really interesting and it sort of resonated with me and it's something that I'm always aware of that people who display their disability on social media, their disability affects them to a lesser extent. I'm always aware that, yes, I'm sitting here in a wheelchair. I have cerebral palsy. But cerebral palsy is such a varied disability. How do we best illustrate all different types of disability within one diagnosis?
Stephanie [00:13:59] It's a really tricky question and a really good question too, and it did resonate with me, although the examples he gave was around autism and he said some kind of offensive things about autism. Very. So I won't repeat them because I would just. Awful. But there is a tendency for people who have less physical disability or it's less impacting on their functioning to to have more of a say. And it is something we need to sort of, as a society, be able to accommodate a bit more. Just because someone is non-verbal does not mean that they can't communicate their day to day and connect with people. It's just one means of communication and they have been really successful. I keep using the autism as an example, but it's definitely one of those misunderstood ones. There's been lots of examples of people who have haven't been verbal being able to connect by writing a book or using augmentative and assistive communication technology to be able to communicate to people and share their stories and share what what their life is like. There's a video from years ago of this woman who was just engaging with her environment, using sort of the way that she likes to. And that's her way of communicating. And it was like running water down, running her hands in water and doing some what we call self stimulatory behaviours which and it had sort of a like a Siri voice sort of communicating what she was experiencing and what, how this was her language and communication and it was a really powerful video. I'll try and find it so I can send it to you. And it's a really good example of just because you don't speak my language doesn't mean I'm not communicating with you. This is me communicating with my environment and my language. And that was a beautiful example of. Not someone who fits the books communicating and sharing their experience.
Peta [00:16:08] Yeah, the, the example that came to my mind for me and I'm going to make sure I probably edit this in post to make sure I is correct. But there's an Instagram account called Stories about Autism, and a gentleman who's a father of two boys with autism documents their daily life. Both of his sons are pre-verbal, he says, pre-verbal versus non-verbal. He has really helped me in understanding how people who are non-verbal best communicate and how intelligent both his boys are and how in-tune they are with the world. Just their interpretation. Is different compared to people who don't have autism. Possibly.
Stephanie [00:16:55] Yeah. Amazing. I'm also thinking of another social media account. I think the young girl is Headley, and she has. She's visually impaired and deaf, and she has lots of physical disabilities. And her parents are just amazing, sharing what her life is like and how her different facial expressions are communication. And it's a really beautiful account. And I think it's really important that people. Like Hadley and like the young people that you describe, have really good advocates for them who can get their message across without speaking for them, which is sometimes hard to do.
Peta [00:17:38] Yeah, that was another area I actually wanted to talk to you about, and that is how parents advocate for their children, particularly on social media.
Stephanie [00:17:48] When I spoke to Eric Garcia, the author who wrote We're Not Broken Taking the Autism Conversation, he was talking about autism parents as being a a difficult sort of concept to sometimes have to deal with in that they're strong advocates for their children, but not don't necessarily speak for the children in the best way. And I know that some organisations are led by parents such as Autism Speaks, which has a very negative reputation, namely because their mission statement has historically been to try and cure autism. So that very non affirming Freddie DeBoer says a really quite a negative example of what it what it must be like to be a carer or a parent with someone with autism, basically describing that person as a burden. And it's an awful experience, which is just a really offensive way to describe someone. As far as I'm aware, I don't have a child with disability, so I don't I'm only coming up for a professional perspective. I don't know what it's like to parent someone with a disability who requires an extensive amount of support. So I'm absolutely certain it has a lot of challenges and difficulties, but that it needs to be respects and sometimes it's very othering.
Peta [00:19:12] Yeah, it's it's it's such a tricky topic, particularly on social media today. I think people have such strong feelings one way or another. Like, you know, people who have children should not put them on social media. And that's for people who have non-disabled kids and disabled kids. That's it. That's a personal decision. But there is a line in regards to how much and like, we're not going to go down this rabbit hole too much. But I'm really interested in your perspective of how much a parent has a right to express the challenges and the ongoing journey of having a disabled child for them as a parent versus utilising this, quote, unquote, status of disability.
Stephanie [00:20:04] Yes. Sometimes it borders on like that quote unquote inspiration poem that Stella Young termed where the a parent might be using their child to generate a response from people of being like, Wow, that parent is a hero, or that child is such a precious angel and we learn more from them than they learn from us. And all of those sort of gross comments that often come under the videos that that get shown. I think I don't want to tell a parent what to do, and it's completely their choice. But I think there's a way to do it, just like two peas in a pod. They I feel like they really convey the difficulties and the struggles of being a parent while at the same time championing championing their children and acknowledging all the quirks and uniqueness. And you can see that they absolutely adore and love their kids and would not want them any other way at the same time without portraying them as this like perfect angel child as well.
Peta [00:21:09] For me personally, I've only listened to two peas in a pod a little bit, and I it's because I probably listen to their early stuff when they explain their life a bit more. And I found it really, really triggering like very difficult to listen to as a disabled person because it makes me reflect and think, oh, my goodness, I must've made my parents was really difficult. It's a really difficult thing to make sure that you're allowing parents to be truthful and give the difficult realities at home of like parenting a child with a disability, but also as a disabled person. It's pretty shit to listen to.
Stephanie [00:21:55] Yeah, 100%. And I guess it comes down to as well as just like we spoke about an up psychosomatic episode. It depends on who it's for. A lot of those parenting groups are for parents, not so much for the actual people with the disability. And that's okay. But yeah, there's a there's a point where it can actually become a harmful experience for someone's disability, but I don't know what the answer is. It's tricky.
Peta [00:22:30] So maybe answer is like as long as the work is doing something positive for a group of people, it doesn't have to be for everyone. Like it doesn't have to be for me. The podcast wouldn't have to be for me. But I fully respect and value what they do in the disability community because there are so many parents that need to feel heard, better, understood, and also really illustrate to other people who don't have disabled children of what the realities of life are like and how society isn't equipped to support those communities. Going back to Tik-Tok for a moment and how people are displaying different disabilities. I think also what really troubles me in how disability is sometimes being reflected by people who necessarily don't have a disability is the fact that. The algorithm loves things that are negative or that catches people's attention. Positive things don't tend to do very well on social media.
Stephanie [00:23:41] This. There's definitely a place for social media. I found social media really helpful in connecting with people like yourself. There's so much good social media has done amazing things for people with disability as well. Having said that, it also exposes the same negativity that people typically get outside of social media as well. Use social media, but acknowledge and remember it's just one person's perspective. Often people giving you tips and advice and sharing their experience aren't professionals. Most of the time they're not. They're just very good talkers. And there's a place for them. And I know that there's been really helpful experiences that have come out of that. But it's really important to, if you are concerned, talk to a mental health professional. Ask your GP. Have a chat with them and see if they have any advice for you. And they should be able to refer you to a mental health professional that will help you. That is a bit of a mental health crisis at the moment, unfortunately, and waitlists are long, but there are lots of psychologists out there that will do telehealth a little bit sooner than face to face, so definitely engage with that. Also, I've used Lifeline before. I find it really useful. I know friends of use Lifeline as as an interim before being able to talk to a cyclist. You don't have to be at the lowest point to access them too. You could just need someone to chat to and they might give you some tips as well because they are qualified health professionals on the other end. I'm a mental health professional myself and have experience working in disability, but I'm not the the expert when it comes to disability. I only know it from one perspective as someone who supports people with disability. So please listen to disabled people in these conversations. We need to hear multiple voices, not just one person with one perspective of one disability, but we need to have a conversation with lots of people.
Peta [00:25:47] Thank you so much for being here. Steph I thoroughly enjoyed it.
Stephanie [00:25:51] Me too. I feel like we could talk for another hour.
Peta [00:25:56] Thank you for listening to this week's episode. Hope you enjoyed it. If you did enjoy this episode, can I encourage you to leave a writing interview? If you listen on Apple Podcasts, if you listen on another platform, please make sure you hit, follow, or share the podcast on social media. It all helps more people know and understand that this podcast exists. If you'd like to get in contact with me, you can follow me on social media. My handle is @petahooke on Instagram. You can send me an email. My email address is The I Can't Stand Podcast at gmail.com or you can contact me through my website icantstandpodcast.com. Until next week. Have a good one, guys. Bye.
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