S2 Ep1: Disability & Social Media with Disabled Eliza

Welcome back to our Undressing Disability podcast!

We kick off series 2 with a chat about what it means to have a social media presence, celebrating your identity.

Our host Jennie welcomes Disabled Eliza who is a disabled LGBQT+ Content creator and activist.
 
Listen to Jennie and Eliza discussing how Eliza is 'Loud and Proud' about being disabled and part of the LGBQT+ community.

• Eliza talks about their disabilities and the journey of discovering what certain labels meant personally.
• Eliza also discusses the negative side of being so visible on social media and not conforming to some people’s views of what disability looks like.

Transcript

Jennie Williams: 0:09

Welcome to Enhance the UK's Undressing Disability podcast where we strip back all things taboo on sex and disability. So welcome to another episode. We are going to welcome our next guest Eliza, who goes by the name of Disabled Eliza. Is that right, on Instagram? Before we start, Eliza, can you just for the sake of everybody listening, could you just tell us about yourself but also can you audio describe yourself because you're not vanilla - you're very colourful and gorgeous. Could you audio describe yourself?

Eliza: 0:53

Yeah course. So I'm Eliza and I am a disabled content creator online, my pronouns are they them. And I do a lot of work around disability awareness, questioning society's notion of what a disabled person is, or 'looks like' in quotes. Because I think that we have quite a limited view within our society. And a lot of my work is also just about like, making fellow disabled people feel safe and seen and heard in my little corner of the internet. And I'm all about the colour! So I am white. I have tattoos on my right arm of bugs with various different fruit for them to eat. And I have rainbow hair. So it starts purple goes to pink, goes to orange, goes to yellow to green to yellow, and then to orange again, across my whole head. And I normally am wearing a rainbow pair of dungarees. That tends to be how it goes. And I'll have a black eyeliner on my eye. And yeah, that's what I look like and who I am.

Jennie Williams: 2:12

That's a brilliant description. Do you do your own hair? Or do you get someone to do it?

Eliza: 2:16

No, I have a friend who does it. And she does a very, very good job. It's the Chronic Iconic on Instagram. And yeah, she does it for me. I'm very grateful

Jennie Williams: 2:28

Because that's gotta be high maintenance. I can just about cope with a balayage that I like grow out very, very quickly. I know we don't like to talk about age. But you know, you're 24 years old. And frankly, you're smashing it at the moment, talking about your disability and LGBTQ plus. And I mean, actually, if you're happy, are you happy to share a little bit about your condition?

Eliza: 2:58

Yeah, definitely. So yeah, I'm bisexual and non binary. So that's sort of where my LGBTQ plus identity falls. I'm very keen on, for myself, labels because I'm neurodivergent. So I'm diagnosed with dyslexia, dyspraxia and OCD are there I'm currently waiting for a potential autism diagnosis as well. And in terms of health wise, I have a condition called hypermobile Ehlers Danlos Syndrome. So I have widespread pain across my body, it affects all aspects internally and externally. I dislocate regularly, I get tired very easily. And nned to sit down, need to use a wheelchair. I also have Crohn's disease. So I have a lot of stomach issues. And POTS, which kind of comes with the Ehlers danlos Syndrome a lot of the time and kind of bladder issues as well. So I sort of feel that I'm affected from head to toe, in lots of different areas of my body. But I try to keep on top of things as much as I can. But definitely do struggle. I've been really lucky over the last kind of year or so I've actually finally got a bit more of a supportive health care system in place. Because I finally kind of got some diagnoses and then put on more like medication that's actually helping and things like that, which has been really good for me, because I've actually got a much more supportive team now because I was looking for a diagnosis of the Ehlers danlos Syndrome for a really really long time. So that's kind of me and how my disability affects me day to day.

Jennie Williams: 4:42

I think it's it's interesting because through Enhance we work with lots of people with a massive range of impairments and people often talk about disability community and I'm the first person to say, what community is that? because it's very fragmented, because we all have very different conditions that affect us in a very different way. And also just about how open we are at talking about things. And I find that a lot of people that identify as LGBTQ plus or queer, really a lot of the time have more of a sense of community sometimes, and an ability to talk quite openly about things. Do you feel like, that's the case with you? Because you know, at 24 you're very open about your sexuality, which is definitely not the case for everybody.

Eliza: 5:39

Um, yeah, I think it's really interesting that you say that, because I didn't used to be open. So I actually was brought up in the church, I was born in a religious household. And although my family would never say anything against LGBT, and actually were very, very supportive. Unfortunately, my school and a lot of people that I was with, not everybody, but a lot of people I was with, were quite anti LGBT. And that was definitely quite hard to deal with as a kid. I remember at school, there was a female teacher who was getting married, and she was marrying a woman. And we used to do this big event, every time a teacher got married, where we'd like put sticks up, and they'd run through and it was all a big celebration, but we didn't do it for her because of the relationship, so I kind of hid that part of me away. But when my condition started to really impact me more, that I was much more aware of what was going on and stuff, that was kind of when I became a bit more open and aware of things and started talking about what my sexuality was and unpacking that and unpacking what my gender was, and things like that, and really found a community there. So I think that it's that you, you kind of can find support, and kind of learn to be open about it. And I then had family members who also came out as LGBT, and that really helped me to then be more confident in myself. But I guess now I'm very conscious to take up space because I think with disabled people and LGBTQ plus people, so often, society wants us to kind of be quiet and stay in the corner or stay at home, but I kind of actively do the opposite. And when I am out and about I actively take up space and avoid as much as I can, it's much easier said than done, but avoid apologising for when something isn't accessible for me, I used to fall into apologising to them for me being there. Whereas actually, it's not my fault, it's totally 100% their fault for not making something accessible. So I guess I sort of had to teach myself to take up space. And a lot of that has come through being around other LGBTQ plus people and other disabled people online and learning from them. And there's definitely particular kind of content creators that really helped me along that journey, to be able to understand my disability and to be loud and proud about it because so often we're taught not to be.

Jennie Williams: 8:22

It's interesting, isn't it, even everything that comes with your colourful hair and dungarees and you know, that kind of taking up space I think that's so the opposite to what most people feel that they should be, not even whether they're disabled or not actually but we just kind of get our head down a little bit and just apologise and do the very British thing and then when we decide that we're going to tell people then that can be seen and received in a beautiful way but also it can be received in a really negative way. How do you find that? How do people receive you while you're taking up this space as you call it?

Eliza: 9:05

I definitely get very mixed reactions, so in public most people I think kind of look at me like Ah the poor disabled person? Do you need help with things? and obviously I don't mind if somebody asked politely or whatever but I have had people push my wheelchair without asking or start doing things without asking and that can make me feel quite uncomfortable and then when I will politely say 'Can we not' then they can be a bit taken back and be like 'oh you know I thought that you needed help. I was just being nice' and I get that a lot of the time people do just have good intentions. But then I think sometimes you kind of have to question where those intentions come from, do they come from the fact that society views disabled people as sort of helpless and obviously sometimes I do need help and it's completely okay to need help. Because I do - I can't do things in the house like cooking and things like that. But I'm not a child because I need that support. But online, I get very mixed reactions. Either people really, really like it. And I think they kind of feel really seen, or they don't like it and will be quite horrible to me, which definitely does happen, particularly when I'm talking about disability issues that maybe are a little bit more, quote unquote 'controversial', in the sense of access needs. For example, I did a video where I spoke about the fact that some disabled people need single use plastic straws. And the backlash I got from that was just like astronomical, just people saying really terrible things.

Jennie Williams: 10:38

What kinds of things were being said?

Eliza: 10:41

That it's for the greater good, if disabled people don't have straws, it doesn't matter. We need to protect the environment over a small group of people. And you're kind of like, what, that's ridiculous. And what's also quite frustrating about those situations is that a lot of the people who are saying things like this will then go home and will buy from fast fashion or will eat fish or whatever and I don't care what people eat or do or what they need to access for themselves. That isn't what bothers me, it's just more the fact that if you're judging somebody else for their access needs whilst doing things that aren't maybe 100% environmental whatever, why are you judging a disabled person for what they physically need, if you're then doing things that you need, whatever you judge something that you need as, so that can be quite frustrating, and then people will say quite terrible things. And that can be hard. So I do get a real mix of things online. I also get a lot of homophobia and stuff, but the main thing that bothers me and most people do online to get under my skin is just tell me that I'm faking being disabled. I get that a lot as well. Because I think I don't look like what maybe you're taught a disabled person looks like - whatever that is, in school or whatever, or from adverts. So people will be like, 'you can't be disabled if you wear colourful clothes or wear makeup or whatever'.

Jennie Williams: 12:17

Are people actually still saying that?

Eliza: 12:19

Yeah, regularly! I mean, sometimes when a video goes viral it can.. I had one person for example yesterday who commented on I think 50 TikTok videos I've created about how I was faking being disabled and that he apparently worked for PIP and was going to send off my stuff and catch me out or whatever. And I was kind of like okay. So yeah, it is quite a regular thing and also you'll find that trolls will target multiple people in the community so they'll go for lots of people's pages which is mostly frustrating. So yeah, it's a real mix but then the other side of it is that people do really love it and they're really supportive and lovely and kind and I'm always so grateful to have those people on board who really do support me in what I do and I am so lucky to have them and they're a support to me as well, so yeah, it's a mix. I try and focus on the good stuff though.

Jennie Williams: 13:21

I was gonna say it's so hard because you're saying it in a very matter of fact way but that's really hard, isn't it? When people say mean things to you, whether you know them or not, this has got to impact you. It's got to impact your mental health and your physical health. And do you read those things? Or do you just try and dismiss it and go they're just trolls, I'm just gonna ignore it. How do you cope with that and I hate to bring age in, but you know, at a young age as well, it's a lot to take on.

Eliza: 13:54

Yeah, I deal with it in a real mix of different ways depending on how I'm feeling and because I think sometimes I can kind of come across online as quite confident and really confident in my disabled identity and who I am, but I think behind the scenes I'm maybe not quite as confident as I might portray. And, obviously I do have OCD and my OCD is very focused on intrusive thoughts without any visible compulsions, but I do have kind of non visible compulsions, or like I'll ask for reassurance a lot. So they definitely do affect me and some days, it is better than others, and it can trigger intrusive thoughts about the fact that maybe I am faking what if I'm just doing all of this for attention, and blah, blah. But the main way that I deal with it is generally through therapy and support and I have a really good support network. And I've got a really good medical team now who does support me and I know that I'm not faking it, and I know that logically, but it definitely does get hard sometimes. And it can be hard to really stick to that. And sometimes I do just need to put my phone down because I try not to read all of my comments because I can find that you can go in a bit of a spiral and it can be quite difficult but you know, they still do pop up, because if you open your phone and go on your notifications, they will be there. So it can be difficult to put that boundary in, but the way I deal with it mainly is focusing on the good things and yeah, therapy, good support network, but I think it will be a lie to say that it doesn't affect me. And there's this notion online, where it's like, oh, it's just a troll or whatever. But when you get 1000 comments like that a day, it does get quite tiring and a lot. So yeah, it definitely can be a different can be hard.

Jennie Williams: 15:58

I think kudos to you and people like you because I've always been for want of a better word an activist and disabled activist, but I've always done it through an organisation, you know, that's why I set the charity up, I did it through an organisation so that there's an umbrella, I'm not always the 'face of' and I know I would struggle with that. I know, I really, really would. But we need people like you to be the face of, to be having these conversations because if you weren't, then who would be? and we can do a certain extent as a charity and organisation but you need individuals to be out there and say, 'you can have tattoos, you can have your hair colourful, you can go and have sex, you can get a vibrator, you can do whatever you want to do'. And I think that's a really important thing. Certainly, from Enhance's point of view, we will say, right, okay, we need to run general disability awareness training, as well as running the Undressing Disability campaign because there's no point empowering lots of disabled people, if they're then going out into the community, and then non disabled people are not getting it. And that's the thing, isn't it? It's about education. Like I said, You're smashing it on Instagram, and you're doing really well, what's the ultimate dream for you, professionally and personally as well, I guess.

Eliza: 17:21

Yeah, good question. And maybe my answer might be a bit of an annoying answer. But growing up, I was very, very goal focused. So I went and did graphic design at university. And I was like, I'm going to get a design job at this design agency when I leave, and I did. But it didn't really work out. Physically, I was exhausted, I was in pain, I was going into an office every day, nine till six, and at the weekend, just not being able to do anything else with my time. At the time, I didn't have a diagnosis. And so I just really wasn't coping. And that was when I actually got my kind of OCD diagnosis, and then my mobility kind of declined around that time as well. And through a lot of work, I sort of changed my goals a bit, to just being able to enjoy what I'm doing at the moment, because, for me, my life is uncertain, I don't know how long I'm going to be able to work for, I don't know how long I'm going to be able to carry on doing the things that I'm doing at the rate that I'm doing them at the moment because my health is unpredictable and unstable. And I think sometimes when you focus on it, that can be a lot - I kind of describe it as I feel like I'm a ticking bomb that at any moment, it could just go off. And that would be it, I might not be very well for a long time. Now, that doesn't mean it's definitely going to happen. It might not, I might be quite well for a very long period of time. But you know, it is likely at some point I'm going to need to go and have surgery or be in hospital for a long period of time and things like that. And so because of that I kind of, I guess retrained myself to focus on what I'm doing at the moment. Do I have access to my basic needs right now? And that was very much what my therapy has always been focused on and what I really found comfort in. So I guess my goal in that sense is to be happy in what I'm doing at the moment and to be as comfortable as possible. In terms of social media goals, I try not to focus too much on numbers. There's definitely people who I would love to do collaborations with and that would be really exciting. One of my most recent goals was to be a model and I was recently just asked to model for two of my favourite brands. So I've just done that and that was really exciting. So I guess I kind of have smaller goals now that are important to me. But my main goal is just to allow disabled people to feel seen and heard. And to know that they are amazing, wonderful, valid members of this society that we live in. And I guess just educate. And those are kind of my main things. I'd love to see disability education in schools and in TV programmes. And I guess the ultimate goal for everyone who does this kind of work is for full equality. And that would be amazing to see. But I think, you know, small steps, I guess, is good. And Netflix's Sex Education, for example, was the first time that I'd ever seen a disabled person on the TV, having a relationship with somebody. I'd never seen that before as a disabled person. And I just sat there and watched it in complete tears, just thinking I've never seen this before and this is just absolutely amazing. And so I guess, more of that, to the point that I don't feel amazed to see it anymore. That is just, oh, there's me on the TV, you know, this person represents me and what I do with my time. So I guess those are kind of my goals.

Jennie Williams: 21:19

Well they're great goals. And I think it's a discipline in itself, just saying, right I need to live in the moment, because we can say these things. But it's really hard to do. And you're always thinking, right, what's the next thing and what's the next project I should be doing and, and actually being able to try and rein ourselves back a bit. And especially when you're living with a condition where you can have flare ups. I mean, the most thing you'll hear within our team is, 'I'm having a flare', because most of us have an autoimmune condition, and days are good, and days are bad, and being able to pace yourself and look after each other. I think that's the key thing isn't it, just basic human kindness about understanding that conditions flare. It's interesting, actually, what you say about Sex Education, because it's great and they actually contacted us and asked us to go down and work with them on those scenes, and actually get it right. And I think this is what we want more of, isn't it, representation and TV programmes, etc, saying, Can you teach us as disabled people? Can you tell us what these narratives should be? Can you tell us the true storylines of how these things go? And that's what people want, true repr sentation, right? Yeah. That it's realistic. But I think it s brilliant, what you're doing and I would find it incre ibly hard with negative commen s, and anyone would be, but ab olutely hats off to you for doing that. And I think th t hopefully, as generations go social media can be a terrib e place in so many ways, but it lso can be a really beautifu positive place. And people can find that so I mean, bef re we end, you spoke about col aboration. Are there any key eople that you want to mention t at you'd love to work ith? Maybe we can maybe we ca make this happen!

Eliza: 23:29

Yeah, definitely a few. So like Hannah Witton is one, I've been following Hannah for a long time.

Jennie Williams: 23:35

We work very closely with Hannah, so I'm sure we can chat to Hannah!

Eliza: 23:40

and Jessica Kellgren-Fozard as well is another one

Jennie Williams: 23:44

ah we work very closely with Jess I'm sure we can make these things happen!

Eliza: 23:48

So yeah, those are kind of like two people and you know what, without them I wouldn't be doing the work I'm doing now. And Jessica was the first time that I watched a video and was like she said, I'm a disabled person. And that was kind of the first time that I learnt what that was and that it was me because I never had a label for that before and so without that work I wouldn't be doing what I'm doing now so Yeah, I'm very grateful to them for leading the way and talking about these things because I think it's so important.

Jennie Williams: 24:25

Well you know once this is out, I'm gonna make a point of sending this podcast to them and saying guys you had a personal shout out, we need to make this happen, something beautiful! I really really appreciate you taking time out to chat to us, and can you just say again your Instagram handle and anything else that you've got, that if people want to follow you or anything that you're doing that you'd like to let people know about?

Eliza: 24:52

Yes, so my socials are disabled_Eliza or disabled eliza across all of them. I'm on YouTube, Tik Tok, Instagram, Twitter. So those are the main things that I'm on. And I kind of update everyone on there about any projects that I've got coming up. And I've got a couple of exciting things in the works that hopefully will be up in the next few weeks. So yeah, that's the best way to keep up to date with me with what I'm doing and support my work.

Jennie Williams: 25:25

Brilliant, thank you so much. And genuinely you should be really proud of yourself, because I think it's a brave thing to do and I don't like using that word, and I don't use it lightly. But it is a brave thing to do, to put yourself out there as an individual and smash through stereotypes knowing that there's a chance that people might say things that are negative, but doing it anyway. I wasn't that confident and I know I keep going on about age because I'm 42 and it's even at this point in my life, I'm still not always that confident talking about where I sit in certain communities and what my stances are and I've been going through this journey for a lot longer than you so it's really difficult. So I think a lot of people that are listening will hopefully benefit - you're going to be doing what you said that Hannah and Jessica did to you, you're going to be doing the same for other people. So that's an amazing thing. So thank you so much for joining us. I really, really appreciate it.

Eliza: 26:24

Thank you so much. It was lovely to talk to you.

Jennie Williams: 26:26

Thank you so much for listening. If you'd like any more information about the work we do under the Undressing Disability campaign, then go on to our website at enhancetheuk.org and click on the Undressing Disability tab.