Imogen Fox

The most dangerous message I’ve ever received - Series 1, Episode 8

In this episode of Queers & Co., I’m joined by Imogen Fox, a queer Disabled femme who serves up radical body politics, anti-diet talk and non-judgemental compassion.

We chat about Imogen’s first foray into disability rights activism as a teen, the trauma of eating rice cakes and cottage cheese and being indoctrinated into diet culture by those closest to us. We also talk about radical Disability politics, the co-opting and white-washing of movements and whether it’s really possible to use your privilege for good.

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Find out more about Gem Kennedy and Queers & Co.

Podcast Artwork by Gemma D’Souza

Resources

Follow Imogen on Instagram

Read Imogen’s self-proclaimed ‘dusty’ blog here

Watch You on Netflix here

Full Transcription

Gem: Hi Imogen.

Imogen: Hello my lovely! Yeah, I’m not too bad, thank you. I was just saying to you I’ve got a really bad tummy ache, so I’m like in a massive jumper with a big hot water bottle… and a kitten actually, just curled up on the sofa, nursing myself.

Gem: I’m sorry that you’re not well. But that sounds like a really lovely place to be in to recover.

Imogen: It’s not not wellness. The annoying bit about it is that it can be quite a regular occurrence. It’s just that my tummy is part of my impairment. So, things like this are kind of, sort of normal. And my go-to coping strategy is to—especially when it’s cold. Just to huddle up and nest myself a little bit…

Gem: Yeah, absolutely. Well, I think I came across your work maybe a couple of years ago. I’ve definitely been following you for quite a while…

Imogen: We’ve been in touch for a while.

Gem: Yeah! And we met at Body Kind last year.

Imogen: Yeah, yeah…

Gem: So, I’m really excited to get the chance to ask you all my questions. And I guess what I generally start off with when I’m chatting to people is just asking them to introduce how they identify, and I guess what different intersections play a role in them as a person.

Imogen: Yeah, okay. I would say I’m a queer disabled femme. I haven’t really kind of started using the term non-binary, but I don’t really identify as being part of a gender binary particularly. I still use the pronouns she/her although they’re not particularly comfortable. But then I don’t find they/them any more comfortable. So, I tend to use a mixture of both of those things.

I live in Bristol in the UK. And I have been a disability rights activist for most of my life actually. But I found an online community through Instagram a few years ago. So, I’ve just been writing and sharing stuff there for a while.

Gem: Yeah. And I’m really interested in how that came about. You talk about radical body politics which is really powerful and obviously has so many different sides to it. I know you say that you’re anti-diet as well. And sort of your relationship with the medical industry and all those kinds of different aspects… So, it will be amazing to start maybe at the beginning. You say you’ve been involved with disability rights activism for a really long time. How did that come about?

Imogen: Okay! Well, I went to into an integrated school. So, I went to school with other disabled children. And whilst my impairment hadn’t been diagnosed, I was already having symptoms. So, I had some learning support needs.

It was integrated to a point because we still had this designated building. Maybe now, it might be different. There might be accessible toilets in the toilets. But back then, we had to go back to the pavilion, it was called, in the middle of the school grounds. There was like bathtubs and physio rooms and there was like the little mini flat where you could learn cooking skills and that kind of stuff.

So, I was part of that little community. And so, I already had a reasonable experience of difference.

So, when I came out as queer, I was like, “This is an absolute nightmare! I couldn't be more different if I tried.” But back then, there was no Tinder or dating stuff. So, when I finally got the internet in my house—which I was nearly 17—I found a pen pal website where you could pen pal with people because that was a thing.  And I met this incredible woman who is still one of my absolute best friends today.  And she was a woman with an impairment. She’s 10 years older than me. And she was working for the Disability Rights Commission. They don’t even exist anymore, the DRC. And we just hit it off straightaway. There was never anything romantic. We were just really good friends. And we started spending loads of time together.

Well, she was part of the Direct Action Network. And so, when they were doing demonstrations, she’d just be like, “Right! We’re going!” So, I just started going to all these demonstrations. We did some in Birmingham over social care. We did some in Manchester. Actually, we did the Disability Rights Commission. But she did quit her job before we did that one. She didn’t just rock up and be like, “I’m not working today. I’m tying myself to my desk. Please still pay me.”

Yeah, we did loads of demos and stuff. But this was pre-18, so still quite kind of formative. I was forming all my political and identities. I was like, “This is what the social model of disability is.” And I was like, “Yes!” I was completely indoctrinated from the minute I heard it. I totally got it!

So, many of your listeners may well already be aware of what that means. But in society, we live in the medical model of disability which implies that our bodies are to blame for the situation that we find ourselves. However, the social model of disability flips that completely and says that society is to blame for the situations that we find ourselves in.

So, for example, the fact that we don’t have physical access to things isn’t our fault because we can’t physically access them. It’s society’s problem because they don’t make it accessible to us. And obviously, that stretches way beyond physical access, but also financial access or attitudinal access even, all the ways in which disabled people are marginalised by society. It is essentially society’s fault.

Gem: Yeah, and it’s just a completely different way of looking at things, isn’t it? I mean I’ve been lucky enough to work with one in particular disability rights activist who takes legal cases. And starting to work with her… it just shows my privilege. I didn’t realise that that is what people experienced. And yeah, it was really eye-opening.

Imogen: Yeah, I think when you live as a disabled person, you don’t realise either. I guess, in some ways, we’re so genuinely caught up in the belief that we’re to blame, that we just have a problem that is our fault—that we are too big and ask for too much and have too many needs. You don’t realise that you’re worthy of better than that.

And to be clear, I really lost my way in the middle. During my twenties, despite the fact that my impairment was probably—I was probably the most obviously physically impaired I’d ever been in my life, I started dieting. Funnily enough, that’s how I started my Instagram account. I was just doing little posts, but it very quickly turned into this is what I’ve eaten and all that kind of bullshit.

And I really didn’t realise until I clicked with anti-diet that the social model of disability stretches way, way, way beyond disabled people in the way that we might kind of assume disability to mean, that actually encompasses all queerness of bodies in general. It’s about a general societal attitude towards others that is the problem.

And when I finally realised that by thinning myself and dieting and restricting, I was actually suddenly part of the society that was so harmful. It all kind of clicked back into place. And it really reignited my politics. And that’s when my Instagram really took off, because I was angry again and mad about being sucked into something that I was so anti. But you don’t realise how desperate you feel to assimilate when you are already asking so much of the world around you.

So, I had 24-hour care needs. I had a host of medical things that needed doing absolutely every day. And I also wore a dress size 28. I was a full-time power chair user. And I guess a massive part of me just felt like if I can just look different, if I could just be more socially acceptable in my wheelchair with my 24-hour carer and everything else that comes with me, maybe that would make it more bearable? Maybe society would make more room for me? Maybe I could take a little bit more of what I need? And actually, in reality, that is so never the case. It’s never what happens. You just end up killing yourself for no good fucking reason.

Gem: Yeah… and be miserable in the process.

Imogen: Yeah! Yeah, absolutely. And the bastards will never, ever, ever change how they feel because as soon as you tick one box, they’re like, “Yeah, but babes, here are all the other boxes you don’t tick LOL. I’m still going to fuck you over.” So, I knocked that on the head pretty quickly—well, not quickly enough to not have to quite a raging eating disorder in the process, but quickly enough that I didn’t do any horrific long-term damage hopefully.

Gem: Yeah! And what was your experience of being around diet culture as a young person. On the one hand, when you were 17 and 18, you were really active. And you were all about making these changes with these different organisations and different actions. Was diet culture something that was there in the background at the time? Or was it not part of your life then? Obviously, I know it’s like, in a way, part of all of our lives, unfortunately.

Imogen: Yeah… obviously, you just don’t realise. I think probably primarily, I’ve been brought up with a very kind of average baby boomer. So, my mum was born just after the World War II. They were very, very working class and had lived without food. But as a baby boomer, she just hit the right times and my parents were eventually middle class. And there was a lot of pressure—or she felt a lot of pressure certainly amongst that white, middle class, little village-y…

We lived just outside of Cambridge. So, it was incredibly white and well-spoken.

Do you know what I mean? So yeah, I think she felt a lot of pressure to look different despite the fact that she, from memory, dieted almost constantly and never really looked any different…

So, I guess it wasn’t overtly conversational. I don’t remember her saying things to me specifically. But I remember eating Ryvita’s for lunch and thinking, “Nobody enjoys a Ryvita. What the fuck is this?”

I mean maybe you might! If you enjoy a Ryvita, you crack on babe! But I know for a fact my mom doesn’t love a Ryvita. Do you know what I mean? Or maybe like if it was smuggled… you know the sweet ones with the raisins in? If you cover those with jam and peanut butter, maybe I could get onboard with that. But the other ones, it’s a no from me. Thanks!

Gem: Yeah, same here. I think it’s the idea of being forced to—I’m not saying your mum forced you, but with diet culture, expecting you to eat something. It just takes away all its enjoyment. It’s something you have to eat.

Imogen: Yeah, absolutely, yeah. Actually, my nieces and nephews, they go for rice crackers. They smash rice crackers. Oh, my God! They fucking love a rice cracker. I’m so traumatised from eating rice crackers with cottage cheese on.

Gem: Oh my God! Me too.

Imogen: But do you know what I mean? Literally, I’m like, “Oh, God! Get that rice cracker away from me.” I’d be karate chopping a 4-year-old, “Get it out of my face! I don’t want your fucking rice cracker, dude.” Yeah, no… ugh! No, thank you.

But yes, I remember the first time my mum said the word “calories” to me. We bought some Pick & Mix. And I think my grandma was probably down. And she was a notorious northern grandma. She bought us lots of sweets. She took us to the bakery every day. We were allowed to pick a doughnut. And she always bought these amazing rolls from Marks & Spencer’s. Oh, my God! They were so good. I don’t know whether those rolls do exist. But if they do, I might actually walk there later!

Gem: …just to see!

Imogen: Yeah, those were so good! And I remember she had bought us a big bag of Pick & Mix each when Woolworth’s still existed… remember that?

Gem: Oh yeah… good times!

Imogen: Yeah! And I remember my mum saying, “You know, you shouldn't eat all of them now. You can have some more later” and her saying sweeties have got a lot of calories in; and me just being like, “a) what is that?” I didn’t really understand it as a thing. And b) I remember thinking, “Well, if I’m going to eat them later, the calories are still the same? So, what difference does ‘later’ make in terms of calories?” It didn’t make any sense to me at all.

But I guess she was probably trying to educate me in a world that she was indoctrinated in because I was already… I look back now, I would say I was a chubby kid. I was definitely a fat teenager. And I think my two much, much thinner, much more naturally sporty and active sisters, I think my mum probably felt like she owed me an education in order to prevent me from probably being her. Do you know what I mean a little bit? She didn’t want me to have to experience what she did.

But in reality, we share a body type. So, I’m going to have those experiences. What would’ve been better, would’ve been maybe fuck the patriarchy.

Gem: Yeah, that’s always better within pretty much everything. I think that’s really common though. That’s certainly my experience, that the reason a lot of people end up with issues around food or being very indoctrinated into diet culture is they’ve kind of had someone be like, “Hello, welcome! In order to keep you safe, this is what we need to do.” And like you said, it’s not from a place of unkindness or anything. it’s just simply like, “I want you to be able to survive as best you can in the world. And this is what you need to do to assimilate.”

Imogen: Yeah, yeah, absolutely. Yes, it’s really frightening, isn’t it, that those come from the closest people that we ought to be the safest with, and yet I think it’s the most dangerous message I think I’ve ever received in my life.

Probably the only other message has come from medics, that I’m not worthy of treatment, of life, of medicines, of all the things that they provide. But actually, to some extent, their messages make a lot more sense than the diet culture ones do.

Interestingly, when I started hanging around with lots more disabled people from the Diet Action Network, diet culture took on a really different kind of twist. They as a community are probably quite anti-diet really because they’re quite “fuck you”—certainly, the radical crips definitely.

But kind of quickly as my impairment progressed and changed, I moved into a much more chronic health rather than a capital D Disabled people movement. And I find that I still actually—

Actually, I’ve never written about this. I’ve got to be quite careful how I talk about it because I don’t want anybody to feel like I’m personally attacking or offending. But the chronic health community actually have a really different approach to the world than the kind of capital D Disabled community. And I think that’s because they’re very indoctrinated into the medical model, into medicine, but also incredibly invested in health. And actually, disabled people— And I’m using the word “capital D” and saying that specifically because lots and lots and lots of people would say that they are disabled, but they wouldn't share the kind of radical politics that I do. I am a capital D disabled person because I am invested very specifically in a certain type of radical politics. And those two things have to be separated out because I don’t want to lump in a load of disabled people who think, “Well, I don’t feel like that.”

So yeah, the kind of more radical progressive group of disabled people aren’t particularly invested in health because they’re like, “Well, LOL… that’s funny. That’s not really attainable. We’ve known from the beginning that that wasn’t ever a thing that was going to be a privilege that we experience. We don’t go out of our way to make life any worse for ourselves. But we also don’t go around trying to kill ourselves in order to be #fitspo,” do you know what I mean?

Whereas the chronic health community are very different. They have often experienced health privilege for big chunks of their lives, and then all of a sudden are now experiencing quite a sudden spin of like deprivation on that front and want to get back to healthy. So, they do all these—I don’t want to say ridiculous diets, but also a little bit ridiculous diets to regain health.

It’s so hard though, isn’t it? If you’re properly lactose intolerant, if you’ve got Coeliac disease, what are you going to do? It’s such a minefield. I just have no idea how you’re going to have those conversations. But I find that the chronic health community is really difficult to be part of. And it definitely fuelled my orthorexia and restrictive eating patterns because I was so desperate to eat myself well, like food was some kind of medicine that I had been… And equally, that food had been some kind of poison the previous couple of decades. Obviously, I don’t really subscribe to those feelings now. I think that bodies react differently to food based on your body rather than the food itself. It’s much more about working with your body to make food manageable rather than demonising certain food groups and being super restrictive and on diets and stuff.

But I found that was really challenging. And I’ve definitely kind of moved away back into that radical disability politics rather than being part of that chronic health community.

Gem: And you mentioned that, during your twenties, you kind of lost your way a bit with being involved with that more radical body politics. What kickstarted or facilitated you moving back into it do you think?

Imogen: It was definitely discovering anti-diet. I was like, “Oh, yeah, fatness is a fucking access issue, duh.” All of a sudden, it kind of clicked in. It’s about being socially acceptable. And all those years, I’ve been really caught up with it, about being impaired very specifically. And actually, now I realise that it encompasses queerness in the broadest sense of the term. It encompasses fatness and ugliness and otherness in general—and queerness as in like actually being LGBTQIAA+. And all of those people benefit from investing in the social model of disability in a way that is probably not really yet understood.

I think we’re getting there. I think there’s a lot of radical fat politics that really intertwine with disability politics. I think that’s definitely moving to the forefront now. But of course, at the same time, lots of really, really not-fat, middle class, white people have co-opted that space. So, it’s really hard to keep those conversations going because those really marginalised voices are always pushed to the outskirts. The minute anybody kind of picks up on something and is like, “Oh, yeah, that’s a really good idea. I’m gonna be part of that.” And you’re like… It’s a no from me, Karen.

Gem: Move aside, it’s my turn.

Imogen: Yeah, literally. Out of the fucking way!

Gem: Yeah! Oh, my God, yeah. I totally hear you. And I guess it’s interesting thinking about your Instagram account, that you started it out—not necessarily intentionally, but you ended up kind of posting what you were eating on there. And now, you’re at, when I looked, at 55,000 followers. And you’re completely…

Imogen: Well, every time I post, it drops by at least 200.

Gem: No way!

Imogen: Yeah, yeah, yeah. I lose more followers than I gain almost always unless I get shouted out by someone enormous, I’m always losing. Yeah, yeah, yeah. I mean, it’s totally fine. I don’t care. But I don’t know what it is. I don’t know whether it’s that people don’t appreciate what I’m talking about or…

I mean, obviously, lots of people are still there. And I have an incredible community. I think lots of people really resonate with the feeling of being “othered” in society. And I hope that I offer some kind of solidarity and alliance and allyship to that group of people who’ve always just been on the outside, being, “I just don’t get it! I don’t know how I’m going to do this. I can’t! I don’t know how to.” And I’m like, “Yeah, well… me too…”

Gem: Yeah. And I have two questions. I guess my first thing is like: “Why the hell people are following you?” What do they think they’re going to get when they see your post and think, “Oh, yeah… she looks good. I’m going to follow her.” And then, they post something, and they leave. I don’t understand.

Imogen: If it’s stuff that’s shared and it’s really like make-up-heavy, fashion-heavy […], I get these influxes of people. And then, when they actually see what your work is about, they’re like, “It’s just not for me.”  Do you know what I mean? So, I think it’s probably slightly just a misunderstanding that they thought that I was a thin, white person posting about River Island trousers. But actually, I was writing about being oppressed by society.

Gem: Yeah, quick exit.

Imogen: Yeah, yeah, yeah. I mean, move along babe. Do you know what I mean? You’re the problem. The people who stay —I’m preaching to the choir—they don’t appreciate it when I say something, and they’re like, “Oh, God, yeah. Me too!” But actually, all the people who move on are the people who really probably need to see it more than anybody else.

Gem: Absolutely! And that’s the frustrating thing isn’t? How do you get that message to those people because they need it the most?

Imogen: I think it’s a big issue within the community actually because I think a lot of the bigger accounts, if you look at the top—and I’m using the term loosely, #BoPo—they are palatable. They’re socially acceptable. They’re black, but they’re not dark. They’re fat, but they’re not properly fat. They’re impaired, but they look like me. Do you know what I mean? I’m so part of that. And it still irks me. And it irks a lot of us. It’s a conversation that we have really regularly “Should we be taking up space in this community? Should we be getting a message out there? Is it reasonable to say that we’re putting our foot in a doorway that makes it potentially possible that other people who would never hear this message might hear it? Or should it just absolutely be black femmes to the front? Should this all end?” I wrestle with that really regularly.

Gem: Yeah, it’s a really tricky dilemma. I guess one thing that I have noticed in—because my entry point for body stuff was body positivity. But then I think very quickly I realised that that wasn’t enough. It needed to be much wider than that. It was about so much more—about fat people and about all kinds of different marginalised communities.

And so, I think, in a way, it’s a great entry point for people. But the issue is when people just stop there. They think, “Oh, yes, that’s fine. I’ve worked it out for myself now. Dieting isn’t important or not necessary. Done!” And then, they’re not thinking further than that. Well, who else does this affect? Yeah, there’s so much more to it.

Imogen: Did you come to the Anti-Diet Riot Club?

Gem: Yes! In January?

Imogen: Yeah!

Gem: Yeah, I did two workshops there.

Imogen: Oh, did you? Amazing! Did you see me speak because we literally spoke about that?

Gem: No! Oh, no… I think you were scheduled at the same time as one of my workshops, so I didn’t get to see it.

Imogen: Yeah, yeah, yeah. We had exactly the same conversation. I felt awful saying it. It sounds dreadful. And let me finish my sentence before you judge me.

I was like, “I hate coming to events like this because I say the same thing over and over and over. And Lucy goes home and gets McDonald’s on the way home and feels fine about it. And she learns to love her size 12 to 14 body and her little poochy belly. But then she does nothing else! We’re all still desperately trying to educate. It’s so much bigger than you, babe… so much bigger than you! And I totally want you to be comfortable in your body. And I want you to be able to eat what you want and not give a fuck about it. And I want you to be able to have conversations with people about how you’re feeling about living in your body. And that’s totally chill! But where’s the next conversation?”

“Like when your racist auntie says something, are you making a comment? Or are you just pleased that you were eating Christmas dinner?” Do you know what I mean? Yeah, it’s really hard.

Gem: Yeah, absolutely. Yeah. And I guess that’s where intersectionality comes in. And a lot of people aren’t even aware of that concept, of different people’s identities intersect in a different way. That means they’re oppressed in different ways by society. And yeah, if you’re just thinking like, “Oh, my life has been so tough because I’ve been bullied for being fat,” for example, yeah, that’s absolutely shit. But if you don’t then use that experience and lift up other people, then what’s it for?

Imogen: Yeah, broaden their political awareness, absolutely. And actually, in reality, we’ve even whitewashed the term intersectionality. Originally, it was designed to be a discussion of blackness and intersectionality. The whole point was how blackness intersected with other issues, other societal others. And that’s become a bit of a token now. What does intersectionality mean anymore? It kind of just means one of everybody. It means box-ticking. It’s become like an exercise in making sure there’s a different range of faces on the panel. And in some ways… brilliant! In other ways… oh, my God! Guys, we’ve got to stop stealing shit from black people and just making it white-palatable. Do you know what I mean? Argh!

Gem: Yes, absolutely. Yes!

Imogen: Sorry!

Gem: No, don’t apologise. No, it’s absolutely true. It’s important. It needs to be said. I guess I’m just wondering like what… hmmm… what do I want to say?

I mean, the reason I think or one of the reasons that I’m doing this podcast is that I’m involved with different communities who are marginalised in some ways. And I also recognise that I have a lot of privilege as a white, middle class person. But one of the issues that I found is that there will be people doing activism in one particular sphere. And it’s amazing that people are really focused and pushing that particular issue. But they also have a lot of blind spots, as everyone does. But they have blind spots around lots of other areas of activism. And so, the idea of this was to get people from different areas onto the podcast to talk about what it is that they’re working on in order to make other people aware.

So, for example, fat activism or queer activism, but queer people may not be aware of children’s rights. So, bringing in children’s rights, bringing in all these different aspects. And yeah, I’m not even sure what I’m trying to say. I guess it’s just it feels important to be aware that, even though we are an activated person in some way, we still have blind spots. And there are still things that we are not aware of and we need to work on. And there always will be.

Imogen: Yeah. I’ve spoken to Becky about this already. But when I got to the Anti-Diet Riot Club, she had told me beforehand that the venue was gonna be fully accessible. It kind of wasn’t. And then, when I went onstage, I realised I had to get up a load of steps. And I would never normally attend an event where I have to take steps to get on a stage because I wouldn't have been able to do that if I’ve been a wheelchair user. And a large number of my following wouldn't have been able to do that.

I think it’s really important to look at who’s in the room with you… but more importantly, who isn’t in the room with you. And why is it that you’re in the room over somebody else and should you be saying no in order to make sure that there is space for somebody else to be in the room.

I think there’s a lot of people now within the Anti-Diet community kind of going into schools and talking to children, etc., which is just incredible. And I’m so excited that’s happening. But why is it that white, middle class people are able to do that, and yet black women wouldn't?

There’s so many conversations there to be had around access, financial access. It’s because we’re able to work different hours and potentially other people are doing shift work. There’s so much. It’s so much bigger. And I guess, to some extent, I do feel like it is impossible to use your privilege for good. I haven’t finalised those thoughts for myself. So, I guess this is an open-ended conversation, isn’t it? And it’s really important to have those conversations with other white people and not other marginalised people because it’s for us to work out and not them.

But yeah, it’s a really big, ongoing conversation. And it should be a conversation that we’re having really, really constantly to make sure that we’re holding ourselves accountable regularly.

Gem: Yeah. And what you say about events needing to be accessible and thinking about who isn’t in the room and who is, it’s so important or integral to—If you have a movement—for example, people who are anti-diet—if those people are having conversations in a room or at an event with people like them, then what changes? “Oh yes, I hear you. That’s your issue. But okay then, bye!” Nothing’s really changed. How do you have those conversations? And the internet is obviously great for that for accessing more people of different identities. But it doesn’t come without its problems.

Imogen: Well, is it great? One of my best friends is a black, disabled lesbian. She’s a wheelchair user. She’s more masc presenting. She’s got two adopted kids. She’s approaching middle age and all. Honestly, I swear to God, if she went on Instagram, she would just roll her fucking eyes like, “No, this is absolutely not for me. I do not belong here.”

And my wife, similarly, she’s a disabled person and looks quite different to other people. And there’s absolutely no way she would ever, ever join the kind of body acceptance, body liberation movement because she’d just be like, “Well, there’s no space for me here. It’s not accessible before you’ve even started.” And we’re not even attending an event yet, you know?

Gem: Yeah. And I think I’m thinking more of like other groups where people can gather. So, for example, if people are on Facebook—I don’t know if you’re part of London Bi Pandas, for example. That’s a really great group.

Imogen: Oh, cool, no.

Gem: Yeah, it’s brilliant. And the idea behind that is… it started out trying to get a float ready for Pride that represented the bi community. And it’s expanded into so much more. And it’s a really active group. And I think they do a lot of questioning around who is in the group, why they’re here, how can we have different conversations?

And I think there’s definitely a difference between where you find those communities because, you’re right, Instagram is not the place for those kind of big discussions. I guess just the nature of how it’s set up, it’s literally like snapshots of people’s lives, isn’t it, rather than ongoing conversations.

Imogen: Yeah, I’ve met somebody on the other day who had been following me for a little while. She’s like, “Oh, my God! Your life looks so interesting. You’re always going out…” and I’ve started posting more toilet selfies as a result because I’m just like, “Just because I drink a cocktail once a week does not mean I don’t spend four days a week locked in my own bathroom sobbing into my own armpits” Do you know what I mean? I feel like even my life on Instagram is curated to some extent. It kind of can’t not be unless I was literally filming my own fucking documentary, there’s absolutely no way that you’d see every facet of my life. And I try to be as open and honest as possible about what the realities are. But it’d be really inconvenient for a start if every time we had an argument with my Mrs, I was like, “Can we just stop and pose for another picture please. I just need to put this on Instagram.”

Gem: Instagram Live!

Imogen: Yeah, literally, yeah. “Can we do some questions? Who’s right, Imogen or Lottie? Who wins?” 

Gem: Yeah, that would be quite problematic.

Imogen: It’s always me, by the way. If you can just vote for me, that’d be great. Thanks so much!

Gem: And I guess that feeds into I like to talk to people about how they navigate, especially when they’re activating in some way, burnout. It’s a very real thing for people who are exposed to relentless shitness of fighting for your own rights while also being aware of everything that’s going on in the world and what you’re trying to do I guess to further particular movements. How do you actually look after yourself? And I don’t mean in a bath bomb kind of way.

Imogen: Yeah… LOL!

Gem: How does that work for you? Is it something that you’ve become really proficient at? Or is it something you’re working towards?

Imogen: No, I’m terrible. I’m so bad at it. I almost don’t know how to answer your question because I just don’t know how to do that. That’s still not accessible to me. I’m so—I don’t want to say profoundly damaged and traumatised. But also, I’m so profoundly damaged and traumatised by my experiences within the medical community. And taking care of myself is the hardest task ever. I literally would rather do a tax return every day.

Gem: Oh, wow!

Imogen: Yeah… it’s only top of my mind because I literally just had to do a tax return. And then, I did it wrong, so I had to do it again. I had to do it two days in a row. And I was just thinking, “Is that better or worse? Hmmm… better! Definitely better.”

Yeah, no, I hate it. I don’t know. I don’t know. Like I don’t know what to do for the best. I don’t know when to cancel things. I don’t know when to go to things. I don’t know how to ask for enough money. I often go to events. But for access issues, I end up having to stay overnight. And therefore, the hotel costs me £200. And the travel cost me however much. And I have to take a PA with me. And I have to take a shit ton of medical equipment. And therefore, the £50 that they’re paying me, it has cost me an extra £200 or even above. And I’ve had to pay somebody’s wages to be there to support me. I don’t know how to do any of that. Still, yeah… 

And yet, at the same time, I equally feel kind of jealous and sad and lacking and like I’m missing out on all the things that the more privileged people just get to be part of without thinking about it.

And so, I see people on Instagram going out and doing stuff together and being like, “Well, obviously, next time somebody thinks to invite me, I’ll go because I want to be part of that. It’s not fair that I can’t be part of that.”

I don’t really know how to manage those situations at all. Things like today are still really difficult. I still feel really confused about whether it’s okay not to do my stretches or whether that should be a priority this afternoon. Will that make me feel better or worse? It’s just so complex. I have not idea.

Gem: And is there a time in your life where you felt like you have had it “down”—for want of a better word.

Imogen: No, absolutely not.

Gem: So, you mentioned briefly the community that you’ve built up on Instagram (and obviously, this community that you had when you were younger and you were doing the Direct Action work as well), I just wondered what community has meant for you in your journey. I’m sorry, I hate the word. But what role has community played in your life?

Imogen: I think it’s probably been one of the most grounding and rewarding things that I’ve ever found. My family didn’t always feel like the safest place when I was a kid. School never felt safe. I lived in a homeless hostel for a little while when I was young. And I have felt unimaginably lonely for long periods of my life.          

And so, finding a community that just kind of saw all my ugly and all the things that I felt were obscene and not okay, and then to just be like, “Yeah, okay… whatevs…?”

I think that’s why I’m so radically part of the capital D disabled community, because I just have never found space for myself in a way that was genuinely rooted in kindness and compassion—and non-judgmental compassion more specifically.

And I hope that that’s what is bred amongst my Facebook community. It’s just that there is space for people to bring their ugliest of anxieties and know that there’s space for them without judgment, and just to feel connected and part of something that is bigger than them, that’s important, that allows them to kind of take a deep breath and be genuinely who they are… yeah…

Gem: Yeah, that’s such an amazing thing to be able to offer people.

Imogen: Well, and to be part of.

Gem: Hmmm… yeah, of course.

Imogen: I mean they make the same space for me as I make for them. That’s sort of the deal, isn’t it?

I think when I kind of got into my late twenties, I realised that the word “family” comes from the word “familiar.” And the real, genuine sense of the word, family isn’t to do with biology or blood. And by this point, I already had a foster son. And so, I learned that family wasn’t about who I was biologically related to because he was my son and I hadn’t given birth to him.

So, I think that really kind of transformed my view of what is family, and in turn, what was community and connection and how they were important to me and what was it I wanted to elicit from them and within them. And so, I really worked on who I had around me and how I interacted with them, how I made space for them, and how I asked for them to make space for me.

That’s still an ongoing journey for me because in the same way that I’m not great at self-care, I’m not brilliant at boundaries—I have designated the year 2020 ‘the year of boundaries’. Just in a really kind of gentle, inquisitive exploration, what are boundaries? What do they mean to me? How are they important? How are they at all in self-care? And how could I use them? How are they abused? I need to do definitely a lot more work around that. But I think being part of a really compassionate community is a really important start because I know I’ve got a core group of people who I could tell my boundaries to once I’ve got them and that they would be respectful of them—most of them (obviously, not my mum).

Gem: And it’s so interesting to me because I made some notes before we talked today. And one of my things I can read out to you was: “You talk a lot about your boundaries. What has your own experience been with developing boundaries?”

Imogen: Yeah, that’s so funny.

Gem: You come across to me as a person who, really, not necessarily—I’m not saying you claimed to have it sorted or you’re putting out there that you know it all or anything.  But just you seem to be a really boundaried person in such a healthy way. And it’s so interesting hearing you say that that’s something you’re working on…?

Imogen: I think it’s really difficult because I imagine—okay, so for example, I get lots of questions on Instagram about “what’s wrong with me?” or “what my diagnosis is?” and all that kind of stuff. And I’m quite overtly like, “Fuck the fuck off!” And I’ve got a highlight saved on my profile which is just called Tubes and it’s essentially a rant of me shouting at people because I have so many questions about the tubes that I’ve got on my body, on my abdomen.

But when you’re in a doctor’s office by yourself, and they’re asking to weigh you because they’re trying to work out how much anaesthetic you need—do you know what I mean—at what point is his question reasonable? And at what point is my boundary of I don’t know how much I weight is reasonable? Like who wins there? I feel like neither of us particularly. 

In those moments, it’s just me. It isn’t a whole community of people. “Fuck ‘em Imogen” Do you what I mean? It’s pretty hard sometimes. The nuance. The balance, the way that we have to fold and be malleable in some situations.  We can’t just be rigid all of the time. It would be unreasonable for me to say, “No, this is an absolute 100% you can never do that to me boundary” because what if my safety is then at risk? It’s such a nuanced conversation.

And yeah, in some ways, I probably do look like I have boundaries down. But behind closed doors, when I’m on my own and not stood in the rage of my fellow siblings amongst my community, I’m just stood as a really scared, isolated person in an office with probably a powerful white man who could essentially do and say whatever he wanted and I’m just as frightened and unsure as everybody else who’s sat in the office before me (and also, in the office after me).

That’s the reality, isn’t it? That’s what marginalised bodies generally kind of have to live with to some extent. And it would be nice to say, “No, I opt out of diet culture fully.” But actually, if you go to work at an office every day, you probably haven’t got much of a choice. And I have to go to the doctor’s twice a week, so you know…?

Gem: Yeah, it’s understanding that you can’t ever have complete control over what can and can’t come into your life, right?

Imogen: And the boundaries, obviously, they’re really important in the self-care. And it’s obviously again really important having a community of people around me. They’re obviously really important. But I guess that’s why we do what we’re doing now, isn’t it? I don’t want people to feel alone in a doctor’s office. I don’t want them to be frightened and unsure. I don’t want them to question their politics because some white man is telling them that they’re not worthy of an expensive treatment. I want the whole world to feel differently about my body, but also all the other bodies out there.

So, that’s why I’m here and we do this. I don’t want anyone to feel like I felt.

Gem: Yeah, that’s so powerful. And so, with that in mind, what’s next for you?

Imogen: You know what? Probably some rest?

Gem: Lovely!

Imogen: I’m really bad! It’s Valentine’s day today. Obviously, it wouldn't be Valentine’s day when this goes out. I just put a bottle of Prosecco in the fridge.

Gem: Oh, lovely!

Imogen: And I try not to do long-term thinking because my body doesn’t really allow for that. That’s not a privilege that I get really. You know, little bits and pieces, I’ll book in things. But I have to get used to the idea that life is kind of smaller than what am I doing next week or next month.

Gem: Mm-hmm…

Imogen: I’m going on holiday in March. There we go!

Gem: Lovely! I’ll take it. Where are you going?

Imogen: We’re going to go to Florida. Don’t tell anybody.

Gem: Okay, right!

Imogen: Let, my partner, went to Florida every year for quite a long time because, as a wheelchair user and as a family who had the means to do so, it was just the easiest place to go. The bungalows are kind of level access. Her dad was kind of helping move around. And they went to Disney because it’s in Florida. So, they got a hot holiday that was wheelchair accessible and they went to Disney.

I am not invested in Disney at all. I’m not particularly invested in Florida really. But I am invested in not being in the UK in March. So, Florida it is!

Gem: Woo-hoo!

Imogen: I’m going to Disney for the first time.

Gem: Oh, have a great time.

Imogen: Thank you.

Gem: And one thing that I mentioned to you before is, every time someone comes to the podcast, I’ll ask them if they’re happy to share something that they’re really enjoying. And I know that you’ve got something.

Imogen: Yeah! So, I was just saying… I think it might just be me. But I don’t like Netflix. So literally, everything I watch, I’m like, “Meh… I mean, it’s alright. But as long as I’m doing something else at the same time like strenuous knitting or really vigorous scrolling on Instagram…”

But finally, I started watching You which is about this kind of psychopath guy who I actually really like. It properly captivated me. So yeah, I’m really enjoying that

Gem: Interesting... I think Netflix has been wanting me to watch it. You know where it puts things…?

Imogen: Oh, like 90% or whatever.

Gem: I’ve just been ignoring it. So maybe I’ll give it a go.

Imogen: I mean, if you hate it, don’t tell me. Or maybe just do. Just tell me. Everyone sends all these recommendations. Somebody said I’ve got to watch—is it Watcher or Witcher?

Gem: Oh, the Witcher I think.

Imogen: Yeah. So that’s next on the list.

Gem: I struggle with creepy things. I watched The Stranger in the house on my own last night. And I was terrified. So yeah, not the best idea.

Imogen: Okay! Put Bridesmaids on babe.

Gem: Oh, yeah. Maybe I’ll do that for Valentine’s day.

Imogen: Exactly! I love it! Literally! Nobody’s in the house, I’m like, “Hmmm… what should I do now? I’m going to put Bridesmaids on!”

Gem: I might just take you up on that. Brilliant!

Imogen: Well, next time, let’s watch Bridesmaids together and drink Prosecco and record for a podcast all at the same time.

Gem: That would be so fun!

Imogen: How cool would that be? That would be great!

Gem: Yeah, next Valentine’s day.

Imogen: Oh, right, yeah. I’ll probably be divorced by then. So, I’ll have a bit more space.

Gem: Well, thank you so much for being on the podcast. It’s been so fun chatting to you.

Imogen: Oh, it’s been really good fun. Thanks for having me. It was lovely!

Gem: Not at all!