Podcast: Non-visible disabilities and the media

The Disability Download

In the latest episode of The Disability Download, we explore the representation of chronic illness, particularly women with chronic illnesses and non-visible disabilities, in the media.

We catch up with artist and illustrator Mimi Butlin, blogger Lucy Dawson and disability rights campaigner Sophia Kleanthous.

Protect our carers with PPE

We are doing all we can to stop the spread of coronavirus, save lives and keep people safe. More equipment to protect our carers is urgently needed.

Protect our carers


Mimi Butlin: I think the media just loves to vilify women and they see disability as a weakness and like a way to do that. So in general they like to pick on someone when they’re vulnerable and it kind of brings out the problems that we have in society like the media always like to pick on women when they’re down.

Lucy Dawson: But I think it’s really important to recognise that in most cases only the people who are closest to us, or only just us ourselves, get to see the lowest and most challenging parts of our conditions.

Sophia Kleanthous: And just kind of seeing how the press and the media actually treat people with chronic conditions has been really worrying and it’s always why I’m always hesitant about talking about my disability.

Cathy Lynch: Hello and welcome to The Disability Download. The Disability Download is brought to you by pan-disability charity Leonard Cheshire. I’m Cathy Lynch.

Erin O’Reilly: And I’m Erin O’Reilly and on this podcast, we respond to current topics, share stories and open up conversations about disability. 

Cathy: We’re bringing this podcast to you from isolation over Skype. So if you encounter any problems over the sound that’s probably why!

Erin: Yeah we’re kind of doing our best to make it work from our own individual homes but definitely wanted to still kind of keep conversations open during this time, and probably more important than ever to be talking about things and delivering things to people.

So last month, on International Woman’s Day, we at Leonard Cheshire launched a limited edition ‘Disabled Looks Like Me’ t-shirt campaign. And for that we teamed up with artist and illustrator Mimi Butlin, who’s also known as @Cantgoout_imsick on Instagram, so you might recognise the name, or follow her or have seen some of her illustrations.

And the whole idea of the campaign was to look at breaking down stereotypes about what disability looks like and show that not every disability is visible and actually, it looks like all of us. 

Cathy: Definitely, and you know with everything going on in the world right now, there’s probably never been a more important time for people to realise that health conditions and disabilities aren’t kind of always visible and that there are so many people who are now considered high risk due to coronavirus who you may never have considered as vulnerable before. 

Erin: Yeah exactly. So we thought, you know for this episode why not kind of delve into this concept a bit further and kind of talk beyond you know coronavirus and obviously society’s view on disability, but also looking at the role the media has played in the portrayal of chronic conditions and disability in general, not just now but obviously in times leading up to this as well. 

Cathy: Yep so we’ve got some really interesting interviews on this episode. So Erin chats to Mimi Butlin, obviously the designer behind our t-shirt campaign. And she also catches up with Lucy Dawson who shares her personal experience of being diagnosed with encephalitis, as well as Sophia, who shares her thoughts on the role of the media and the impact on the disabled community. Let’s give them a listen! 

Erin: Thanks so much for joining us on The Disability Download Mimi. So, we’re talking today about the media’s portrayal of chronic illnesses and non-visible disabilities, but also how woman are portrayed in particular.

You know how sometimes they might be accused of lying perhaps about their conditions or exaggerating it, and this is something that people experience not just in the media but also with healthcare professionals as well, and I know that’s something that’s affected you personally and also inspired a lot of your artwork on Instagram. Would you be able to talk about the inspiration behind some of your illustrations and of your own experiences that led to that as well. 

Mimi: Yeah, so I think with the media and how they portray women with invisible illnesses, everyone who has an invisible illness that I’ve spoken to has had, what the media, like has had that but on a smaller scale if you know what I mean?

So for example, like when I first went to the doctors before really doing any tests and kind of looking for what was wrong, like you were automatically accused of having like a mental health condition. And I think like although now I do have mental health conditions from this whole situation, I think to start with that is kind of, like they should really be starting with looking at actually what could be wrong before kind of coming to the conclusion that you’ve sort of made it all up.

Not sort of discounting the kind of seriousness of having mental health conditions of course, but like I think they are two different things, although they do merge.

Erin: So why do you think then that the media does this? The more celebrities kind of come out and talk about their health conditions, like Jameela Jamil still constantly gets accused of kind of lying about her condition and obviously when people like Selma Blair come out and talk openly it’s very inspiring but then at the same time there’s still kind of a bit of a negative implication in the media. Why do you think that is in terms of women in particular? Do you think that’s still a problem?

Mimi: I think that the media especially just loves to put woman as the sort of crazy vindictive character. And it doesn’t really make much sense because normally the women who are suffering with illness or disabilities, mental or physical, are normally the ones who are experiencing trauma or like abuse from people rather than being the ones who are actually the ‘evil’ character if you know what I mean.

In my experience I’ve had to deal with a lot of people accusing me of exaggerating or faking, which doesn’t really make sense because actually, and the same with celebrities, why would you want this? Do you know what I mean? Like they have so much going for them and young people and young women have so much going for them so why would we want to bring this on ourselves, do you know what I mean? Why would this, it doesn’t really make sense!

Erin: And so you did a whole kind of series on your Instagram in terms of your illustrations, your Believe Us series, with your portraits. Could you tell me a little bit about your inspiration behind that and how you developed that?

Mimi: Yeh well I had throughout my whole time of being ill had been told that it wasn’t happening; even though I had never had any, never dealt with depression or anxiety really. I mean I had a bit of anxiety maybe but more kind of social anxiety that I would say wasn’t too extreme or too uncommon. Maybe for people my age anyway, especially at a new place I was at like university and stuff. And I think that I’d never really experienced, never really experienced discrimination before. I’d never been told that my word wasn’t worth kind of believing, if you know what I mean?

And I think throughout this whole experience it was kind of like I was child and I didn’t know what was going on in my own body and I think to see that celebrities deal with that as well, like with Selma Blair for example. She was told that her MS, well obviously it wasn’t diagnosed at the time, but she was told that her symptoms were down to being a really tired new mum.

And because she was an actress she was deemed to be dramatic and she wasn’t really believed in those ways and I think you just sort of see celebrities as people who are kind of immune from getting treated that way or they kind of don’t get those same questions because they’re really respected but they still get that too. And I think I’ve never really seen any of the men who have chronic illnesses kind of treated the same way as the women do. Their word kind of is enough to be given the tests.

Erin: We’ve talked about Selma Blair and how she was challenged and then I think one of the more kind of recent things in the media that still seems to be going on is Jameela Jamil and how a woman is kind of constantly accusing her of lying about her health conditions and kind of trying to find evidence to challenge her and accusing her of having Munchausen’s. How’s that kind of made you feel seeing that’s kind of still happening in 2020?

Mimi: I don’t want to dismiss Munchhausen’s in this conversation because it is a very serious illness; although there’s such a small amount of people who actually have Munchhausen’s. So to accuse someone of having Munchausen’s rather than actually having the condition EDS – Ehlers Danlos Syndrome – it doesn’t actually, it doesn’t actually make sense that that would be the first conclusion to come to.

But I think people just love, especially women, love to actually sort of accuse women of lying. I think that’s actually a common thing that actually happens quite a lot, that actually women journalists are actually the one’s writing these articles accusing people of faking. I think people, the media just loves to vilify women and they see disability as a weakness and like a way to do that.

So in general they like to pick on someone when they’re vulnerable and it kind of brings out the problems that we have in society like the media always like to pick on women when they’re down.

Erin: Yeah 

Mimi: And also the woman who is accusing Jameela, is a white woman. That’s its own problem as well, like a woman of colour’s lived experience is being invalidated by white people  and I feel that’s definitely an important element to kind of mention as part of this conversation as well.

But I do feel like the media, like film and tv could do so much to change this. Like if they started to represent these sort of illnesses realistically. Not in kind of a vilifying way and not in like a sobbing, like a pitying storyline or something but actually just a realistic kind of portrayal of someone with these conditions, I think it would really change a lot of stuff but I think that’s still really yet to happen even though I think it is getting there. 

Erin: Definitely. I think now when you kind of see disability being portrayed in a tv show or film, people are like, it’s like “oh it’s finally being portrayed in this” and it’s kind of like people like it’s an exception thing when you see it rather than it being part of the norm.

Mimi: Yeah

Erin: And there’s definitely still along way to go. So obviously you’ve been trying to raise awareness and highlight these issues through your artwork on Instagram. And then you worked with us kind of the last month on our joint t-shirt campaign with the slogan ‘Disabled Looks Like Me’.

Which is obviously really important in terms of breaking down stereotypes about what disability looks like and what chronic health conditions look like, kind of trying to give a face to that rather than it kind of people believing they look a certain way. So what was your inspiration behind the slogan and what does that mean to you?

Mimi: I think that even when you’re just out and about, and like the rare times I do leave the house in London I just feel like I have so much privilege in the fact that you can’t tell that I’m disabled and sometimes that is really great.

But then a lot of the time it means that you do get sort of barged into or you do get like the eyes, the accusing eyes when you’re sitting on the disabled seat on the tube or something. And like it can be really difficult to feel like everyday you’re having to prove that you deserve those extra accommodations that you really need, do you know what I mean?

Even just generally it can sometimes feel like you’re not disabled enough to warrant the accommodations that you need. So I think it sort of just came from that and I just think that especially online, a lot of the disabled community online are people who do have invisible illnesses.

And a lot of people who I’m friends with, they get accused on platforms like Reddit and stuff that their illnesses aren’t real. And that’s a bit like the Jameela Jamil thing, like even people who are just open online still get accused by random people who find them and post about them online saying they’re not disabled because they don’t look disabled. Yeah so basically just trying to change people’s perceptions of what disability looks like was the main aim of the project and I just felt like that was really inclusive and it really summed up kind of what I felt like people really needed to say to others.

Erin: Definitely and obviously with the challenging times we’re going through at the moment with coronavirus, the t-shirts kind of unexpectedly launched at a very very relevant time in terms of raising awareness about people who might fall into a higher risk category that you would never consider.

What’s it been like for you, in terms of obviously that conversation has really opened up across social media with a lot of people beginning to maybe talk about their health conditions in a way that they might never have before. How’s that been for you kind of seeing what’s going on and obviously how it’s affected you?

Mimi: I think that it’s really brought a lot of us together in a way that’s kind of saying you know we are the vulnerable people, we are the high risk people. And there’s been quite a few movements that have been coming out of this. I think yeah the t-shirts came at a really great time in terms of, you know obviously it’s not a great situation at all, it’s awful, but I think it is giving people an opportunity to sort of tell their stories.

Erin: And how have you found it? Because obviously people are now experiencing you know isolation and kind of their day to day lives being affected by the coronavirus. And for a lot of disabled people that kind of rings true of every day sometimes.

Mimi: Yeah

Erin: Or kind of going through periods where that’s quite normal. How have you felt kind of seeing everyone being affected by it and talking about that in a new way?

Mimi: I’ve found it really difficult. Like I haven’t found it almost…it’s made me…like it’s bought up a lot of emotions for me I think because I am one of those people, disabled people, who is majority of the time housebound and like, for example, I’ve been isolated for five weeks.

And you know most people have been isolating for say two weeks, and also in this five weeks like I’m saying like maybe I went to one event or like I saw maybe one friend for a cup of coffee or something before those five weeks if you see what I mean. And I’ve found it really hard with like all the memes going round and stuff of like kind of like complaining but also making humour out of like how everyone’s stuck inside. And it makes me feel really uncomfortable because that is my life and now it’s been such a topic of conversation and I’m still not really sure how, like I’ve still not processed quite a lot of my feelings about it to be honest.

But I’ve definitely found it hard that now there’s so many resources online of like how to cope and suddenly there’s all these different ways of staying in contact with friends and stuff online and having big group chats and like working from home. And it’s like all these things that you’ve been missing for your whole adult life and suddenly they’re there. It’s just weird.

I think at the moment it’s kind of hard for me to talk about I think because I think everyone is feeling all these kind of, everyone’s scared, everyone’s at home. So I’m almost finding it hard to kind of say to my friends or something that oh this is my life all the time. But I’m hoping maybe that after this is over people will have more of a, more compassion for people who are stuck inside and they’re not gonna see it as like oh you live the dream you’re like not doing anything, you’re just watching tv all the time. And actually that’s just not the dream at all, it’s very challenging. And it definitely leaves your vulnerable and feeling depressed and yeah.

Erin: Definitely, I think it’s very frustrating to suddenly see people caring perhaps about things that they might never have done before and it’s kind of taking from..

Mimi: Yeah like now people care and it’s just, it’s very much like it’s quite overwhelming. I definitely feel like I can’t process it almost it’s just too much. 

Erin: So for you do you kind of hope maybe you know, looking forward a year’s time or whenever, do you hope that maybe the conversations around invisible disabilities, and probably just disabilities in general, do you hope that that’s going to open up things and maybe open up more avenues for change that weren’t kind of already happening? 

Mimi: Yeah I do really hope so because I think that even the conversation around like how people are being given £94, actually no I can’t remember exactly what it is, but people have been given a certain amount of money to live off and everyone’s complaining that that’s not enough. But that’s what disabled people have been given to live off their whole lives.

And it’s just like hopefully these conversations about how we deserve more than we’re getting will be more a topic of conversation, like I do really hope so. But it’s more just hoping I think. Yeah I do really hope that people will have more compassion and empathy for disabled people and will care more about our rights. And what we have been getting and what we have been dealing with, now they’ve got a taste of what that’s like. 

Erin: Definitely and I think it’s important to keep that conversation going. And I think things like you know you’re just artwork in general and the t-shirt project and the way kind of people are drawing attention to things like that online is definitely going to help kin of keep the conversation going.

Keep people engaged and maybe kind of open up people’s opinions and perceptions. So hopefully that will continue! But thanks so much for joining us for the podcast and take care of yourself!

Mimi: Thank you, it was really nice to have a chat! 

Cathy: Yeah I think that was a really great conversation to listen to, I think Mimi’s work is so great. I think definitely check it out on Instagram, and I got a bit emotional actually listening to it because I think you sort of really understand from Mimi’s perspective where she’s coming from. And obviously that’s kind of the general atmosphere at the moment for a lot of people who obviously experience you know similar issues. Yeah.

Erin: Definitely. Yeah and I think like you say her kind of Instagram page really you know reflects these things and goes a long way in terms of being a really important voice for the disabled community, particularly obviously disabled women as well and like experiencing some of the things that Mimi touched on in that interview. So yeah like Cathy said definitely check it out.

Cathy: Our next interview is with Lucy Dawson who was one of our change 100 interns at Leonard Cheshire. She’s got quite a big online following, so has quite like a good platform in the community to talk about her experience. So it’s a really interesting listen. So take it away Erin.

Erin: So Lucy thank you so much for joining us on the podcast today, it’s really great to speak to you. The topic of our podcast this month is we’re talking about, you know, chronic conditions and how disabilities are not always visible, particularly how those are portrayed in the media, on social media and obviously how people kind of view those in society as well.

So I was just wondering if you could kind of talk to me a bit about your own personal experience and how society’s views on that type of thing has affected you?

Lucy: Yeah ok well first thank you for having me today! Basically, in the Summer of 2016 when I was 20 I started having really bad migraines every single day through the summer holidays. I was two years into my university degree but I was back home and every day I was having these migraines. They were making me like physically sick but I was the type of person who never went to the doctors, like never complained. Partly probably because I didn’t want to find out anything bad was happening!

So I was just brushing them off saying like “ah you haven’t drank enough or the weather’s too hot” or if it was before a period like “oh it’s a menstrual migraine.” So I went back to uni as normal in the, I’d say the end of, next September that year and everything was completely fine. I’d get these headaches now and again but it wasn’t as bad as it had been in the summer. But then about two weeks in, my flatmates, I lived with two girls, started noticing that my behaviour was changing. So I was a really an enthusiastic person, but suddenly I was really depressed and complaining a lot about my degree which was out of character because I’d never had any problems really with education before. 

And in a short space of time, probably over a week, I started shutting myself away from them. Not going down and eating with them, crying a lot, but kept blaming it on “oh I’m really stressed about my dissertation.” But then on the 12 October I think it was, at about six in the morning, my flatmate Becs was woken up to me just screaming her name over and over again. And she came in my room and I was just sort of manic in a way. Couldn’t really get any words out, was just stuttering, and obviously she knew something was very wrong so she rang my mum.

My mum tried to speak to me on the phone and couldn’t really get anything out. So she said like please get an ambulance like she obviously needs to go to hospital. So that day in hospital, they kept me in for about 20 minutes, and said oh she’s had a panic attack and sent me home with some breathing exercises. And I think must have gone home and slept. At this point my memory is blurry about the whole thing really, but I have little flashbacks. So I must have slept the rest of the day and by that evening I was back on the phone to my mum and my sister apologising for stressing them out and saying I’m really sorry, like my dissertation just got on top of me but I’ll be ok, I promise. 

So you know, the next morning at six again the same thing happened. I was just frantically screaming Becs, she came in and this time I’d torn all my bedroom apart and I was sat cross legged, cross armed sort of holding myself rocking backwards and forwards with my eyes like bursting out my skull really, and really couldn’t say anything else. So she rang my mum and dad again and they came straight away from Lincolnshire to Leicester. And when they got there, this is one of the very last memories I have, is of this bright light beaming in my face.

And it wasn’t until months and months later when I asked about it, my dad said he’d started filming there and then on his phone to show the doctors because he was worried. But basically I just kept repeating to my mum and dad: “I’m fat, I’m ugly, I don’t have any friends, no one likes me, I don’t have a boyfriend, I’m gonna fail my degree.” All these really miserable things that didn’t really warrant the behaviour I was…well I was obviously depressed but the way I was acting was a lot worse then depressed. Because I was at uni, my mum and dad had to drive around about five hospitals up and down the country.

They started driving towards a hospital, would get through to them on the phone and they’d say “sorry because of her postcode we can’t take her.” So all day they were driving round with me absolutely manic in the car. Whilst it was moving I tried to get out, like on the motorway tried to escape. I was stuttering then robotically singing and talking along. Eventually by about five o’clock that evening, bear in mind we set off very early in the morning, they managed to get me seen in a hospital.

I think it was either Lincoln or Boston. But in the waiting room my mum had to sit on top of me because I was wild. I tried pulling curtains down, I was swearing at the nurses, I was shouting at patients. Like really weird things, like for example I just got up and started screaming “oranges, oranges, oranges” over again. So nothing that meant anything. None of my sentences would come out and if they did they were completely robotic. So by the end of that day the doctors said to my mum and dad, “she’s very very unwell” and I needed to be sectioned under the Mental Health Act. Basically, “she’d had a mental breakdown.” They said to my mum and dad, “she’s had a mental breakdown, now you go and tell us why she’s had a mental breakdown, you go work out why.” 

Over the time that I was, in a, I was in a psychiatric ward. Over the time I was in there my parents were working with the police to go through my phone and all my social medias to create some sort of narrative as to why me, who’d never had any mental health problems before, had suddenly had a mental breakdown. And obviously we later found out I hadn’t had a mental breakdown. But they were told you go tell us why she has had a mental breakdown. It’s worth mentioning first, they said has she taken drugs, has she been spiked, that was their sort of first port of call. But obviously I’d never touched drugs and my housemates could vouch for that.

So I was in the psychiatric ward from October until just before Christmas. And whilst I was in there I was getting worse and worse. My behaviour was getting more bizarre, I was really rude, I was incontinent, some days I would refuse to see my parents when they came to visit. And eventually my body started sort of giving up, shutting down. So my speech was getting worse and worse, I was sleeping all the time and was in a trance like state which then went on to being catatonic, which means you’re in rigid stupor. And my doctors told my parents at this stage, “look we don’t know why but she is going to die, so as a last ditch attempt now, sign these papers for her to have ECT”, which is electro shock therapy. Like they used to do back in the day. 

So my birthday, my 21st birthday, was the 18 November and on that day I had three rounds of this shock therapy. Which, when we actually found out what the diagnosis was months later, this should not have worked and it is not a treatment for what I actually had. But miraculously it triggered some sort of seizures which seemed to reset my brain. I think the only reason it worked was because prior to being ill I was very healthy. I was a good age and hadn’t had problems before.

After these seizures I was coming round very, very slowly and was just sleeping again at first and I was still catatonic. So they put me back on a ward, I think it was a ward of sort of elderly cancer patients, and just sort of left me to it. And I was sleeping or whatever. So that was ok, that was sort of the treatment that ended up bringing me out of the, well, the disease. But unfortunately whilst I was on that bed I had a really big seizure and fell out of the bed onto an open radiator pipe, and I was catatonic and couldn’t feel my body. And so it burned me, I got a third degree burn on my left bum cheek, but my parents didn’t really find out about that.

And then weeks or whatever later when I started coming round, my dad visited me for the first time and he said I was screaming in pain, crying out in pain, but didn’t know why. There was no explanation. And because my behaviour had been so bizarre before, it was just sort of accepted that it was another strange thing that was going on. However, when I sort of started coming round and being aware of myself a little bit more I sort of knew that my foot wasn’t working properly. But at that stage I was so out of touch with myself and what it felt like to be me, that I didn’t really know what was right and what was wrong. Everything was such a mess, so confusing.

They discharged me a couple of days before Christmas and my was given some dressings and cream and told that I’d got this burn. So I remember so vividly after having a shower one night or getting dressed or something, my mum looking at this burn and seeing it for the first time and it was through all the layers of my skin. It was completely open and just like nothing we’d ever seen before. It’s about 11 centimetres long, it’s the same as if someone had been caught in a fire really. And I wasn’t really able to mobilise, my foot was really, really floppy and dragging and I couldn’t walk. They’d given me a zimmer frame and put this moon boot on me to go home. But we were told it was just my body hadn’t fully woken up yet.

Then in January with a meeting with my neurologist, we finally got a diagnosis of something called anti-NMDA receptor autoimmune encephalitis which is a rare brain disease that results from antibodies attacking the immune system and destroying healthy cells, leading to inflammation of the brain. And it affects all your autoimmune processes like blinking, swallowing. So basically I’d been in this psych ward, treated for a mental illness, given psychotic drugs, for three months, when actually I had a physical brain disease, which needed, it could of needed chemo, it could have needed being pumped full of steroids and everything. And they could have found it by doing one blood test, they could have found it by doing a lumber puncture, but they just went with the narrative that I was mentally ill and didn’t look down at the roots. And I’m so lucky to be alive!

So it wasn’t then until over a year later, after being constantly fobbed off with the reason that my leg wasn’t working was because of the encephalitis, I had a chance meeting with a locum doctor who was taking over my rehab appointment. And I explained what had happened to her and showed her where the burn was. And I remember her face so clearly, it was like the penny dropped and she said the exact position and location of that burn is exactly where your sciatic nerve is. And so basically it had burnt through, burnt through and killed off my sciatic nerve, so that’s when I found out that my leg is actually permanently paralysed. If I’d had not met that doctor on that day I still probably would be believing that it was the encephalitis and maybe it would wake up. Erm, yeah.

Erin: So obviously you know a really, really scary ordeal that you went through and just to think if one person had thought differently at the very start of it all obviously it could have turned out completely differently.

Do you think then how you were treated at the start where they kind of immediately assumed it was mental health related without knowing anything about you and not really kind of delving into anything further, do you think maybe that is kind of a bit of, you know, a reflection of society?

Lucy: Well, I’d say, I’ve studied psychology and I also at university studied mental disorder for a bit and I have no doubt there were gendered implications that resulted in my diagnosis. I mean it’s no secret that mental disorders are diagnosed much more commonly in women than men, for example.

And a lot of the reading that I’ve done on encephalitis and the symptoms that I was experiencing suggests that throughout history lots of women with the same symptoms were labelled as insane. And long before the illness was even recognised.

And a really daunting idea is that women who were labelled as witches and either stoned or drowned or burnt to death during the Salem Witch Trials and other witch trials, could have had actually been suffering from encephalitis the exact same way that I was, I think that’s so scary.

Erin: Yeah wow and you’d think as well given you know how much time has passed that things would be different in terms of kind of you know exploring all the options and yet apparently, especially in your case, it was not you know even suggested and as avenue to look down.

And I think as well, you know, it’s not just in terms of before there’s a diagnosis, I think we do see a lot of instances when people do have a diagnosis and talk openly about it but then they’re still questioned or maybe accused of lying about it like we’ve seen with Jameela Jamil getting accused of having Munchausen’s and kind of lying about her conditions quite publicly and by a lot of different people, who really don’t know anything about her.

Have you ever found since you’ve kind of talked about your experiences, have you ever had kind of any negative backlashes on any of your social media posts or your blogs or has it generally been quite supportive?

Lucy: Well I was I think, even though I have a physical disability, I wear a splint on my leg and have crutches, I think a lot of times when I’ve been speaking to people and actually explained, cause a lot of people think “oh she’s just broken her leg or something” but when they ask questions and I tell them about the brain disease and everything, I think a comment that I get a lot is “oh well you don’t look disabled” or like “I never would have known” kind of thing.

And so I can’t imagine what it’s like for people who have invisible illnesses, like EDS which Jameela has. I think a lot of times, people my sort of age, abled bodied people who maybe are a bit ignorant think oh they’re too young. Or if we dress up nice and put make up on, “too glamorous to be disabled”. But I think it’s really important to recognise that in most cases only the people who are closest to us, or only just us ourselves, get to see the lowest and most challenging parts of our conditions.

I mean, speaking about Jameela who has EDS, I know a few girls who some days they can walk but other days they’re confined to their wheelchairs, and that makes sometimes people look at them and say “ah she’s faking it look she can walk” but you don’t get to see the bad days when it’s a struggle to move at all. So I think people are too quick to jump on people. Like I watched a video by Jessica Kellgren-Fozard who’s a deaf Youtuber who makes videos about chronic illness and disability, she has EDS and she said “how to tell a disabled person’s faking it? You can’t and why do you care?” And in Jameela’s case, a lot of her accounts that were posted on the Instagram thread of someone trying to suggest she had Munchhausen’s, they were inconsistent but then you’ve got to remember all of these accounts came from different interviews that she’s done over the years.

And journalists when they’re writing a piece or putting a piece out, they’re going to focus on whatever seems most newsworthy to them. So they’re going to be using different quotes and different facts, but that doesn’t mean that she’s faking it.

Erin: Yeah, so what do you think kind of needs to change? Cause obviously you know the way mental health in particular as well is portrayed in the media, you know if we think about Caroline Flack when she was going through everything recently, she was absolutely scrutinised in the media even though it was quite clear that you know there was more going on.

But she was villainised, and you know lots of different accounts obviously not taking into account her mental health until it was too late. And you know a lot of people since then really feel like the media have a lot to answer for. What do you think really needs to change to kind of stop the way people are portrayed in the media and kind of fuelling these conversations that are ultimately very negative? 

Lucy: I mean people need to be so much more thoughtful and everyone’s got feelings. I mean it’s often women unfortunately that face so much backlash and it poses the question do people just love to hate confident and empowered women? And I know again going back to Jameela, so many people jumped on that bandwagon straight away and they sort of think they’re white knights or something and they come across like they’re allies of the disabled community if they call her out.

But what they don’t take into consideration is that when you scrutinise someone the way that Jameela did, that actually comes across as frightening to people in the disabled community because then you wonder “well when’s it going to be us that they turn on next and claim that we’re faking it?” And that has such a detrimental effect on people with chronic illness or like you just said could have such a detrimental effect on people with mental health problems which means that they feel like they can’t speak up about their symptoms because they’ll face similar backlash.

Erin: Definitely. You know like we’ve talked about not every condition or disability is visible and I think what’s going on in the world at the moment with coronavirus that’s  become a very important topic in terms of people that are high risk that other people may never have realised.

How have you kind of found things you know recently having been isolated yourself and you know you’re now seeing people talk about isolation I guess in a whole new way and the conversation has opened up globally, how’s that been for you?  

Lucy: Well erm speaking to my disabled friends who I met massively through the Leonard Cheshire Change 100 programme, I think it’s highlighted how blissfully unaware abled bodied people and people who don’t have chronic conditions were or are to the problems that those around them face. I mean lots of people are know sort of fighting for everyone to have the things that they need, regardless of if everyone can work or not which is something that disabled people have been dealing with long before the coronavirus.

And it actually comes across as a little bit insensitive to a lot of people, disabled people, for non disabled people to be so theatrical about the prospect of working from home or being isolated for weeks or months. When that’s been part of our constant reality and will continue to be part of our constant reality once the pandemic’s over. 

Erin: Do you think then, you know, kind of talking about it in that way and these conversations happening, do you think down the line people will, you know, be a bit more aware about the way they talk about things and the way they view disability and health conditions or do you feel like it might just…

Lucy: Well I think that there’s going to be a lot of thinking to be done really because so many people are working from home now. And I don’t know if it’s going to have an effect on employment and the economy that way in the future because if it’s working it’s going to sort of pose a question “do people need to be going into offices every single day?” And I don’t know if that will have big implications on social, people being less social etc.

I did tweet out yesterday that as someone who is chronically ill and spends a lot of time in social isolation this is actually the least lonely I’ve felt in a long time. Because it feels like there’s some sort of camaraderie for the issues that I, and a lot of people, face constantly but I sort of hope the enthusiasm people have for pushing these things forward now doesn’t just vanish again when it’s back to business as usual for them and they’re no longer affected. 

Erin: Yeah definitely we might have a whole kind of social shift on our hands following this and it’s definitely something you know yeah we can’t predict how it’s going to change but I think it’s definitely important that people are you know talking about things and having that understanding that…

Lucy: It would be frustrating, really frustrating for the chronically ill and disabled people I think if when this all sort of comes to an end if suddenly we’re all sort of just forgotten about again. I mean I know at the minute disabled people are having real problems with the effects of Covid-19 like having their carers or assistants having to isolate so they don’t have help anymore. And not being able to order food online for delivery because suddenly all the slots are taken. And the costs of prescriptions and delivery and everything, so I know that in a lot of ways it’s still much harder for disabled people than it is for non-disabled people just cause they’re both in isolation. But I know in some issues now we are sort of fighting for the same things but unfortunately disabled people are still at a disadvantage even in, mass disadvantage. 

Erin: Yeah, definitely, I think yeah it’s a lot to think about and a lot for people to really yeah explore a bit more and kind of think beyond how it’s affecting themselves really isn’t it?

Lucy: Yeah I think that’s the hard thing for a lot of people to sort of put themselves in other people’s shoes and I do think this whole situation it either brings out the best in people or it brings out the worst in people.

Erin: Definitely. Well thank you so much for joining us today and obviously you know keep in touch and let us know how you’re getting on and we’ll just see how things progress over the next few months I guess!

Lucy: Yes I guess we will, thank you for having me!

Cathy: What an experience, what a story! You know, how, how sort of you know she wasn’t listened to or believed by doctors and it took so long to kind of get that diagnosis which is obviously you know an issue that a lot of women experience. So thank you to Lucy for sharing her story with us. And now we turn to Sophia who was one of our Change 100 interns a couple of year’s ago and she talks to us about her experience.

Erin: So Sophia thanks so much for joining us on the podcast today. I just wanted to kind of initially start by talking a bit about you and what your experience has been with how people have dealt with your non-visible disability?

Sophia: Yeah so I guess the best way of explaining it is that…so I’m a campaigner by profession. So I’ve worked in a load of different charities and I found that even charities that worked in medical, health or disability still had a very limited understanding of what disability could encapsulate.

Particularly looking at how disability really affects people that don’t have a physical disability. So someone like me, you’ll look at me and you’ll think I’m completely abled, and I have a lot of kind of chronic health pain conditions that prevents me from being able to do like regular exercise and also being able to meet up with my friends whenever I want to, I have to cancel plans a lot.

And I think for a long time I felt like it was just a laziness thing because that’s what society kind of portrayed to me. That, you know, if you can’t make plans and if you can’t, you know, keep to a schedule it’s just that you’re, it’s you rather than something that’s actually affecting you and a barrier in society.

And for the longest time I felt that it was just in my head because I was being told by doctors that it was in my head and stuff. And just kind of seeing how the press and the media actually treat people with chronic conditions has been really worrying and it’s why I’m always hesitant about talking about my disability.

So I talk about it on social media in the way that I just tweet about helping different charities, but I don’t really talk about it, I haven’t really written a blog about it or anything but I think kind of after this I’d want to write about it more because the situation with Covid-19 has particularly showed that all of these resources for people with invisible disabilities has been available this whole time.

So it’s been quite frustrating and I know a lot of people in the disability community are quite frustrated that only now can I work from home, and everyone else can work from home and it’s not a big issue. Whereas in the past I’ve lost jobs because I couldn’t work in the offices. I’ve had issues where I’ve not been able to commit to a certain thing, I could have done it online cause my pains were so bad that day or something.

So it’s quite frustrating to see that this change was available this whole time. And I think a lot of disability campaigners have been trying to rally this change for a long time. But at the same time there is that positive element that yeah we may be, after this, we can actually start shining a light on conditions that aren’t so visible.

Erin: And you kind of mentioned there the media, the media representation of this kind of thing has put you off yourself from kind of talking publicly and kind of just feeling confident in people’s reaction. What have your thoughts been then in terms of how the media has kind of portrayed people with chronic illnesses?

You know they often get accused of being liars and you know like you said lazy is a word that gets thrown around or you know they’ll pick on different attributes rather than considering what’s going on behind the scenes. What’s been your thoughts on that? 

Sophia: Yeah so I think there’s been some amazing disability community stuff going on with some really amazing bloggers and campaigners on social media and outside of social media. And they’ve really helped raise awareness. And whether that’s celebrities or people who are kind of able to find a voice through this. And it’s really powerful, but the problem is you have celebrities like Jameela Jamil who’s been treated, there’s no other really way of putting it, in a very negative and abusive way because she has a disability that people can’t see.

And because she is someone who is seen to be able bodied, people immediately put a tag on her that she can, this thing that she’s talking about, this health condition EDS, is just something that’s in her head. And I just think it’s horrifying the way that people have treated her. Both the racist treatment that she’s had but also the chronic illness treatment that she’s had. This idea of people like Piers Morgan and famous journalists kind of hammering her down and making her feel terrible about herself.

And that it took her boyfriend to come out and say “you know my girlfriend is really struggling, I wasn’t going to say anything.” And it’s the fact that we need someone else to be able to get someone to listen to us. Like I, the number of times I’ve had like, I’ve read like an interview with someone with a chronic condition and at the end, and one of the questions is like “why do think people don’t respond to you having a disability or why do you have to wear a badge” and stuff.

And it’s because there isn’t enough awareness going on and even if we do have a sign for a disability or we have a disabled badge sign, people assume that it’s just a physical disability. I’ve heard countless stories of people who have chronic conditions where they have to use a wheelchair sometimes, and they can’t, they don’t have to use it all the time, so when they’re seen walking around they’re seen as like cheating, cheating the system.

And there’s just such a negative rhetoric on disability in general; it’s not properly implemented into a lot of different policy strategies. We often feel like we’re left behind and then with chronic illnesses and chronic pain, a lot of us are still being diagnosed. 

So I’m in the process of getting diagnosed at the moment. I’ve been struggling with this for well over ten years and I’ve constantly gone to the doctors and they’ve said it’s just in your head and I’m finally getting some attention because other people are speaking out. So EDS is being seen as a real disability and a real condition, and people are finally being aware that these things need to happen.

So when I see all this negative press, this negative media attention, at least people are finally starting to talk about it. It’s a really negative slant on it but at least people are finally starting to talk about it. It’s actually maybe changing the way health professionals see it, because I have noticed a change in people understanding, for example, endometriosis. I’m going to be having an operation in a couple of months to find out if I do have that.

And about two years ago when I mentioned that to a doctor, they kind of laughed me out of the room. And this is all because of the way society is perceiving disability. The number of times I’ve worn my blue badge on the tube and I’ve just seen people glare at me. Like I’ve asked if I can have a seat or I’ve waited until someone can offer me a seat and they’re just glaring at you and they’re trying to work out why you deserve their seat.

And it’s this kind of battle of who deserves more and when it comes to disability, chronic conditions and invisible disabilities, there’s just not enough understanding and recognition in any community. And the disability community is still working hard to raise awareness of any disability let alone something invisible. So it’s like it’s one battle after another at the moment. 

Erin: Definitely and you mentioned obviously your, you know, you experience with healthcare professionals is something you can come across quite a lot online when you read about different people’s experiences, in terms of not being believed and it kind of being brushed off.

And obviously with what we’ve seen in the media it is often women that are at the centre of, you know, of this media attention and the accusations in terms of lying and you know when it’s linked to mental health and that kind of thing.

Would you say, do you think, this could also be like a gendered thing as well in terms of how long it takes for a woman to get a diagnosis for something 
like this? 

Sophia: Absolutely. I mean years and years ago when I was at school I was told it was like I was hysterical because I was going through puberty and the reason I was in pain was because of puberty. The reason I had a mental health condition was because I had growing pains. And it’s all of these kind of things that women are constantly undermined.

When you see women like Jameela Jamil talking about these things, she’s such a massive role model for me and she’s kind of, she’s one of the people that’s really helped me kind of talk about it in a more open way. Like a load of my friends are kind of, I’ll kind of talk to them and say I have a pain or you know I can’t do this today because of my pains. And they’re like what do you mean? And I’m like I think I’ve told you like a thousand times.

And it’s just one of those things that people sort of wish you better and they’ll say are you ok, how are you? And they always say things like I hope you get better soon and it’s not really that situation. It’s more what can I, what I think people with chronic conditions, they don’t want to hear you say “I hope you get better soon”, because they’re probably not going to and if they do, you know it might take a while. What they want to hear is people saying, how can I support you?

And I think with women we’re still made to feel a lot of the time like conditions we have are in our heads. Like endometriosis is a really good example of people where, women it takes up to about seven years or something to get diagnosed with endometriosis and that involves a series of very invasive tests, including an operation. And only then will they decide what stage you’re at. And if you’re at stage 3 or 4 by that point, you could have been at stage 1 or 2 three years ago or something. It’s just, so it feels like just not enough is happening to support women going through this. And I think it really responds to how the world sees women in general. And obviously women in colour have a much harder struggle than I as a white woman do.

But there is this systemic thing that only now are we getting rid of tampon tax for example. And that’s just kind of just showing the wider problem. Women are still having to pay for what are called ‘luxury items’ to society and that’s just not right, that these are things that could potentially save a woman’s life and prevent her from having to go through, you know, an awful time. Because it is a sanitation thing, it’s not just about a woman with a luxurious product. So I think it’s a wider systemic issue about women not being treated seriously, and particularly with their mental health.

Erin: Definitely! Thank you so much for joining us Sophia it’s been really great talking to you. 

Sophia: Thank you very much, thanks!

Cathy: So we’ve had some really insightful thoughts there from everyone on the podcast and  it really shows the impact of the kind of current environment. We’ve had some responses to the disability download email so I just thought I’d raise your attention to… we’ve had a response from Hannah West. And Hannah has sort of asked us to kind of give her a shout out.

So every Wednesday at 8pm UK time a number of people with M.E. or CFS, sometimes known as Chronic Fatigue syndrome, and fibromyalgia gather on Twitter to collectively raise their voices and bring some much needed awareness. It’s known as M.E. awareness hour and they’ve even managed to get it trending a few times. So just in light of kind of coronavirus at the moment, they’ve been raising awareness of kind of social isolation and kind of giving advice to people who may be kind of struggling.

So that happens kind of every Wednesday so kind of watch out for that on Twitter. And they kind of use the hashtags on the awareness hour which is usually #isolatednotalone and #MEawarenesshour.  

Erin: Yeah thanks for that Cathy and obviously if anyone does want to get in touch with us to let us know about stuff like that that’s happening, or let us know what you think about our episodes or any ideas for future episodes, do email us at disabilitydownload@leonardcheshire.org.

With regards to our t-shirt campaign with Mimi, if you are interested in finding out more, seeing what the t-shirts look like, you can look it up on Leonard Cheshire’s website or you can look it up on Everpress which is where the t-shirts are available from or check out our Instagram page @LeonardCheshire for more information as well. It’s Everpress ‘Disabled Looks Like Me’. I think there’s just over a week left to go so if you are interested, definitely check it out. And as always, please do remember to like, share and subscribe to our podcast!

Cathy: And we hope you’re keeping well and staying safe!

Cathy: I’m Cathy

Erin: And I’m Erin

Both: And this has been the Disability Download!