Episodes
EP006 → Claudia Walder on Shame, Community + Finding New Ground after Disability
In this episode, Nora talks to Claudia Rose Walder, a London-based editor and creative director working within the realms of styling, image direction and journalism. She is also a disability activist, model and the founder of Ablezine, a magazine dedicated to disabled and chronically ill communities, young people and creatives. We talk about Claudia’s experience living with Myalgic Encephalomyelitis, the difficulty of finding appropriate care, her creative outlets and what led her to create Ablezine.
TRANSCRIPT
Nora Logan: 0:00
Wow, this is so life once you did a show that explores the intersection of illness, disability, healing and creativity. Seven years ago, I was told I would need an emergency organ transplant. Before they put me under, I close my eyes and imagine myself writing. Now all these years later, I can say, that was honestly what saved me. Well, I have a brand new lipo. I'm Nora Logan, and this is a podcast on how looking at death helps you live. Today, my guest is Claudia Waldo. Claudia is an editor, Creative Director and disability activist who created the publication able zine dedicated to disabled and chronically ill communities, young people, and creatives. On today's episode, we talk about Claudia's experience living with my logic and Cephalo myelitis. Her creative outlets and what led her to creating tables in the first magazine made by and for disabled people. Here's the conversation. Welcome to select one to date. Claudia, thank you so much for being here today. In 2017, you were diagnosed with a multi system disorder called myalgic encephalomyelitis, commonly known as chronic fatigue syndrome, you've since been diagnosed with fibromyalgia, can you tell me a bit about how you came to be diagnosed with this and what some of the common symptoms are.
Unknown: 1:33
So in 2017, I started experiencing symptoms that I hadn't had before with regards to different parts of my body or reproductive system. And I had an infection and I took some antibiotics given to me by by the doctor, and I went from never having any sort of gastrointestinal issues in my life to feeling like a bomb had exploded in my my gut, and I couldn't eat without being in pain. And I wasn't metabolizing my food, my energy went down hill extremely rapidly, and I was sleeping sort of 16 hour days, and I couldn't, I just felt like I couldn't stay awake. Even if mentally you're quite wired, your your whole system is impacted by such a heavy sense of fatigue that you you're you're just beginning to struggle immensely. Yeah, that was when I got diagnosed with chronic fatigue syndrome, which is relatively similar to long COVID, which maybe more people are aware of Now, both of them can be sort of viral, triggered by different viral infections. But I always use this analogy of a Jenga block when people talk about health and how how chronic illness can impact the body. And essentially, there's so many different things in our life, things that we're not even aware of, or can't see, like pollution, chemical sensitivity, how you given birth to whether you were breastfed all these different things can sort of benefit the immune system or protect you from different kinds of diseases later on in life. And then there's things like physical trauma, accidents, emotional trauma, and yeah, different medications, drugs, all these different things can make you more susceptible to illness. And essentially, each each one of those is a piece of the Jenga, and you never really know when it's all going to come tumbling down. That was the first sort of diagnosis for me and the first symptoms that I began to experience. And then through a lack of health care, and general guard from the medical community that this disease is really life altering, and real. Yeah, I began to develop chronic pain. And since then, I've been diagnosed with a handful of other comorbidities or other sorts of diseases that fall under that same kind of umbrella of autoimmune or different kinds of chronic pain conditions and things like that. And yeah, many of these conditions are more common amongst women. And I think sexism has impacted healthcare so much that we don't really recognize how many people are suffering through a lack of health care, especially on the NHS.
Nora Logan: 4:23
And what was it like when you first went to the NHS and you first went to doctors to try to receive help? What was the response? Like?
Unknown: 4:33
I mean, with with me specifically, it was like, you know, obviously, you need to get an official diagnosis, especially I was so unwell, I couldn't work, it wouldn't have been plausible with the level of sort of fatigue I was experiencing. And you need an official diagnosis to be able to receive employment benefits and things like that. So yeah, they told me that the waiting list was going to be maybe eight or nine months to get an official diagnosis. So had to go private in order to sort of bypass that waiting list. And from then on, it was just kind of disappointment after disappointment and this idea that, you know, give it six months and you'll be better without any form of health care or support whatsoever from us. They did give me like B 12 injections, which weren't helpful. There's controversial form of physical therapy they offer, which is graded exercise therapy, which can be really detrimental for people that have post exertional malaise. So yeah, it basically opened up a whole world of like, now you're your own doctor, and go through these Facebook groups and go through all these obscure like research papers about this condition. And like rustle up your own treatment plan. When you're at your most ill most tired, most physically overwhelmed, emotionally overwhelmed, you've ever been in your life, you know, you're 23 and we've told you that like the NHS is here for you, if anything ever happens, you will receive health care. In reality, I didn't. And yeah, on top of that, gaslighting, there was my first appointment with the specialist I saw privately for my diagnosis, he told me to sit up straight and smile. Now Yeah. And that things would get better. And yeah, it's it's pretty disgusting when you when you're treated like essentially like a female receptionist in a 1950s like, movie about trying to make it and whatever sort of career path and everyone's just concerned with how you look and how you present yourself and this idea of mental illness, and that being a big factor, when in reality, it's just one of many different Jenga pieces, essentially. So yeah, it was pretty heavy, I'm not gonna lie.
Nora Logan: 6:50
Yeah, and I mean, I've really identify with that internet rabbit hole, trying to kind of figure out what's going on with your body. And also, the flip side of it being a place for community, I spent hours and hours trying to figure out what a certain thing was happening in my body what certain symptom meant, what new virus I had, because I was extremely immunosuppressed for a long time. But it also connected me to the world in a way when I was really isolated. And I know that something that's been true for you, how has the internet and social media and the information available, there been a support for you when maybe the NHS or the medical industrial complex, sometimes helped you
Unknown: 7:45
that jagged pill, like it was really a lifeline for me when I was in the darkest phases of my life, and so early on in my 20s, as well, I mean, when you acquire a disability, at that point in your life, as opposed to from birth, and well, maybe in all the stages of your life, where it's more expected that you will lose your health will begin to develop pain and things like this. It felt Yeah, I just felt incredibly alone. And that's when it taken me about six months of just sort of processing all this information on my own, and sort of losing all of my friends and realizing that like, you can't always rely on family, either. When you're dealing with these types of highly stigmatized conditions, and illnesses that people aren't familiar with, you know, I remember wishing and praying that I had cancer just so that somebody would like, acknowledge and help me, as opposed to it just being like such a profound struggle that Yeah, honestly, I thought I was losing my mind. Then I began to sort of realize, now I'm disabled. And what does that mean? Because I couldn't really recognize myself amongst any sort of representation of disability, or disability iconography that you see in your day to day life. And so I decided that I sort of had to come out of the closet, as it were, and like, push all that shame and stigma I was feeling as far out of my mind as possible and and see, like, maybe there are people that can help me, maybe there are people out there that know what I'm going through. Maybe there are people out there that are experiencing the same thing as me. And it's really important that I find them now because otherwise you know, I won't survive.
Nora Logan: 9:38
In 2018, you wrote an article for goddamn magazine, about your illness. And you wrote about your bedroom as your sanctuary. Would you read an excerpt from that article from for us?
Unknown: 9:54
Yeah, sure. My bedroom became both my sanctuary and my prison where I'd spend hours was curled up in agony after a mountainous task like folding laundry, crying so often I felt like a leaky tap. Having worked as a freelance fashion stylist, I was used to freedom, hard work and all the outward appearances of glamorous lifestyle. Now I could barely dress myself. The shame associated with illness and disability is something that I struggled with. At first, I was insecure, afraid of judgment.
Nora Logan: 10:23
When I read your words, I felt a deep recognition, both in regards to feeling like a leaky tap, you know, and feeling exhausted just after a simple task. And also having worked myself both in fashion and TV before getting sick, and really creating my identity around hard work. And it really took me a long time to shake off the shame I felt after my body changed after I became disabled. I was transformed really, so radically through illness. I'm curious how you grappled with the shame back then. And then also how it's shifted over the years.
Unknown: 11:01
Yeah, I mean, like I said, I think it's such a different experience for someone that acquires disability as opposed to being born with it, and not necessarily recognizing another type of life, or lifestyle or the way that other people perceive you. And so, yeah, I mean, I've really felt like I've lost a sense of identity, really, really rapidly. But I was still in the same place that I'd always been. And I think, fashion is such a shallow industry, to be blunt. At first, I couldn't even imagine myself in those circles anymore. And I felt like there was a process that I had to go through emotionally row recognized, why do I feel so bad? And why is this so like, suffocating, and it's because what I'm experiencing is internalized ableism and externalized, ableism. And it but the all of these things were still so new to me. And that's when I began to actually research disability and the kinds of industries and environments that I'd been working in are exposed to before, and finding such a lack of evidence that disabled people even exist, let alone that they're functioning in society, that they are a part of our society. And they are, like you or me, you know, and there's not necessarily one local one way to be disabled. And so my only experience of disability had been through my my mum, because my mum, I was diagnosed with Parkinson's disease when I was 14, and she was 41. So give or take 10 years, I was able to sort of have a positive disabled role model in my life that was still still working, still socializing, still experiencing life as before, but with new challenges and new things, hurdles to overcome or ways to adapt in the workplace. And sort of this was my first experience of understanding what is an adaptation? What is a? How is this company going to make this accessible to me type thing? access needs access requirements, essentially. So yeah, I realized that it's nothing to be ashamed of, and I'm certainly not ashamed of my mother. So why would I be ashamed of myself, you know, I just need to, you just need to shake it off. I don't know if there's any, any any other way to really get around it. I mean, I still experience internalized ableism. For sure. for a really long time, up until really, very recently, I couldn't fathom this idea of even wanting to get better, because I struggled with feeling like disability was a bad thing. Because it brought brought so much change and so much awareness and an awakening into my life. A very like conscious form of awakening where I felt like this has made me a bit better person, this is just increase the amount of facets that I have to my identity and my personality. And not everybody likes complex things or people you know, not everybody likes having to think or adapt in order to do what they want. And I think socially, I still struggle a lot with having friends. And how do you have friends when you can't necessarily be yourself when you can't be fully yourself? What about those friends that you know can't necessarily be there for you in one dynamic, but they will in another? Socially, we really struggle to recognize disability and understand what the good thing is to do or what the right thing is to do around it. I think too many people are willing to just ignore it and shuffle away from it, so that they don't have to put themselves in uncomfortable positions and they don't need to feel uncomfortable.
Nora Logan: 14:47
The world that we live in is so ablest when someone's ill, it's at least I can only speak from my own lived experience, though many people rallied around me at that time. When I was severely ill, there was this sort of expectation that I would be, I would someday come back into the fold in the same way, maybe not in the same way. But I would come back into the fold. And for me, it's been a real process of like, separating the wheat from the chaff, really, in terms of relationships, and lots of people have stayed and lots of people have gone. And that's important because I have I've had to rearrange how I am in community with people. And I don't have the same type of energy that I once did. And it's just an interesting question to think about, because how do communities help people thrive? When the world is doesn't cater for that? Yeah, one element is to think about it in terms of being social and your personal relationships. I'm curious to know also, how have you dealt with shaking off this idea of productivity being king? And reframing what work looks like for you? Have you gone through a transformation around that?
Unknown: 16:05
Yeah, I mean, when you can't work a nine to five, and you're forced to kind of adapt your own style of working, there becomes no separation, or there was no separation for me between living and working, it was all sort of one in the same, you know, it was a good place for me to direct my focus, because mental illness is something that I've also struggled with a lot. With the isolation most sort of directly, I would say, I think social isolation is one of the biggest thing that chronically ill or disabled people experience. And, you know, I was I had a thriving social life, I worked in fashion, all I did was go to events. Like that was basically my job. And, you know, and if it wasn't events that I was invited to, it would be music videos that I was working on, or TV commercials that I was working on, and fashion editorials. So these are all like thriving social places, and to go from being too ill to get out of my bed for, you know, months on end, then it goes on to the years, and you're struggling to sort of experience recognition from the medical community, and you're struggling, and having to chase up all of this money medical admin all the time to just find some answers, have some hope, essentially, I mean, I didn't really have that experience, things were just getting worse. And, you know, at the same time, I had to go outside of the NHS, for some things. And then when you're in an environment where you're working with kind of alternative medical practitioners, there's no sense of accountability in those areas. So when you get worse, as opposed to getting better, is it your fault? You know, what, why aren't you getting better? I think a lot of people around you, when you're not getting acknowledged by doctors and departments in the NHS, why are other people in your life going to give you your illness, the respect deserves essentially or the recognition it deserves, yeah, it was really sort of toxic for me at some point to sort of seek health care and try to get better as well. So work for me was one of the only places where I could go and be around like minded people and to share that form of validation with within the community.
Nora Logan: 18:31
I know for myself, I felt a lot of grief of having to let go of those parts of myself. And again, you know, it is it was an is so different for me because I got sick at 28. And everything changed. So it was a different experience of disability than other people who maybe were born with it. I have and still do sometimes feel grief about having to change my life so much. How has that been present for you
Unknown: 19:00
with productivity as well, the past year has been the first time I've really given myself space to not work and to be less than perfect, essentially, and not to constantly give, give, give give when I had nothing like I was pouring from an empty cup for such a long time. The lack of support available to like disabled entrepreneurs and creative disabled people I think is really it's such a significant lack of help and support. So you know, I've really had to move and shake in order to get recognition for Abel zine and the work that we were trying to do. In terms of the grief. I mean, this year as well. I've tried to kind of, well, I recognized you know, that actually I wasn't as happy as I could have been, and that through the sort of lack of identity I experienced and embracing a disabled identity for myself was still only one facet of who I am as a person overall. So I've been trying to kind of shed or address some of the grief that maybe I felt and and it's been a long journey of just feeling like, you know, I don't need to look a certain way, and I don't need to dress a certain way to, for my experience to be true. So actually still very interested in fashion and diversity and imagery and media and how we can kind of work within the creative sector to do significant beneficial things for underrepresented communities or marginalized communities and how we can essentially have a more ethical, even structure for how we work in business and in different sorts of companies and brands and things like that. So I've realized, you know, that, like I said, I don't think people like complexity, but I've been forced to adapt in so many different ways, as a disabled person, or as a chronically ill person, that I went from styling, which was really like a one track road of me thinking I need to make this work, because I've put so much free time, like free labor into it in order to be recognized in order to get more jobs. If I let go of this and embrace some of my other sort of creative talents or interests, well, I'll just be this like, you know, somebody that's not good enough that that one thing that they had to diversify, but I realized that's not actually true. And that diversifying yourself and your outlets, it, whether it's for your own personal creative investment, and like your free time and your hobbies, I've got 1,000,001 hobbies. Really important to me. Yeah, just to take my mind off of things, essentially. But also in terms of work, I realized, if I can't be productive in the way that I was before. Again, I need to diversify and need to be able to offer and do lots of different things in order to make a living and in order to, to continue towards success, I suppose.
Nora Logan: 22:17
I mean, I started in styling myself, and it was so much lugging clothes around, and just lots of
Unknown: 22:26
is a very, like, physical, laborious job. Yeah, so physical. Yeah, it's the same as like set design. So it would always be like the set team, and the styling team was like, it's just so much stuff, and then picking it all up. But you know, returning everything, it's, it's so demanding, it's growing. And, again, I mean, in this environment, they will treat you either as the glam squad, which is like heavily sexist sort of attitudes that you will experience on set, or that you're Mary Poppins, and that you can provide 1,000,001 different styles and looks for 1,000,001 different body types. And it's only going to take you to like one or two days, Max, you know, this, this, this idea of prep. Yeah, is severely underrated.
Nora Logan: 23:12
Especially when you're going and buying things from places and then you have to return them. No, nobody talks about.
Unknown: 23:19
Yeah, or just collections from prs. Yeah, yeah. timeframes and everything. It's a lot of public transport.
Nora Logan: 23:26
Yeah, exactly. Nobody talks about that when you're applying. So you mentioned it was in which you formed in 2018, after receiving your own diagnosis and realizing that there were very few examples of diversity, creative opportunities, or communities that included disabled people. Can you tell me a bit about how it came about and how you got it off the ground?
Unknown: 23:52
I actually studied fashion journalism. Prior to becoming a fashion stylist. At university. We used InDesign we made our own magazines, we would write about a lot of different aspects of sort of image culture. And I was always, I struggled with the idea of becoming a journalist, because I felt at the time, like, I didn't know what voice of mine I wanted to use, what voice Do I have? What do I represent? Like, I guess I was struggling with my identity in some ways, even back then. But it gave me skills that once I became sick, and I realized, like none of these creative outlets that exist, discuss disability in any kind of significant way or significant amount. I know so many photographers, I know so many stylists, makeup artists. And now I'm beginning to know a lot of disabled people that are my age and are also you know, similar to me like they care about how they look what they're wearing, but they have these different lives essentially, that aren't being represented in, in wider discourse. And I didn't necessarily even read magazines prior to starting April's in, because I thought they were too expensive, full of advertisements, what are you really getting, you know, beyond like a coffee table type thing to keep? And yeah, they're enjoyable. But you know, who's got the time to sit down and read one type thing? Yeah, I just realized, like, I need an outlet to be able to talk about this stuff. And I really enjoy curating these different things that I'm discovering. And I think other people would enjoy it, too. And I'm in a unique position that I know people that can help me make it a reality. And so yeah, I just didn't even know what it was going to be. I just started creating content. And I think for the first six months, I didn't show a single person what that content looked like, I was really afraid that people would think it was weird. They wouldn't understand it. But I started working with a graphic designer that I'd met, you know, on the on a handful of occasions, but he had the time to help. And yeah, we began putting it together. And by the time we were finished, I mean, it took at least a year. We had like, you know, over 160 pages or something of really beautiful time. So much time and investment put into the way it looked. And the messages that we were putting forth, that yeah, once we'd actually sent it to print, I mean, the interest and the amount of support, I began to receive what people were saying was, you know, made it all worth it. But man was I anxious about
Nora Logan: 26:49
but I mean, you created an incredibly beautiful product, I have it in front of me, I have one of your the additions in front of me. And it's so beautiful on every level, you've created this sort of high fashion glossy magazine, you decided from the beginning, I'm guessing to do it in print, why was that important to you? Why would why was that aspect of it so important to you?
Unknown: 27:16
I think there's so few things that we, as disabled people can say, is ours and is made for us and is beautiful. You know, when when I first was working with a printer and being asked, you know, what stock paper do you want? What finished do you want, you know, we can do this, we can do that, I didn't really need much time to think I realized I wanted it to be glossy, and I wanted it to stand up against every other fashion magazine that you'll see in the Tate Modern, or wherever you go to buy magazines that are beautiful and culturally outspoken. So yeah, I just realized the support, the attention would always be there from within the community, because we really don't have that many, like outlets that celebrate us as well. And it was such a celebration of disability and all of its facets, all of its manifestations and the way that we can all experience it so differently that, you know, I just wanted to make as important physically, as it is emotionally to a lot of people.
Nora Logan: 28:26
And also you do such a good job at showing the full spectrum of everyone's humanity, or the people that you you highlight and how vibrant people are. It's so often and you've talked about this, it makes people uncomfortable to talk about disability or to be even shown images of people who have disabilities. So to create something that really celebrate the community is such a beautiful thing to put out into the world.
Unknown: 28:58
Yeah, and also, we can both probably relate to this experience of like grappling this new world and this former world of like being able bodied, being non disabled and being disabled chronically ill and experiencing all of these new barriers and sort of challenges. And because I could grapple and still understand both of those experiences. To me, it was really important as well that this wasn't just a product for the community to be seen by the community and nobody else it was equally important to me that non disabled people would see it, pick it up and feel safe reading it and not judged and they can expose themselves to the stories and these people's experiences without anyone judging them to be receive it in the right way you know and to have the right response is to say about it is individual personal experience. When you sit down with the publication and read it, no one's forcing you to if you're not interested in That's fine, you know, go anyway. But if you are actually interested in becoming an ally, if you're interested in just getting more of an awareness and understanding of how these other young people are living their lives, you know, maybe you can kind of join us down the road, and maybe you will yourself if you become sick. It's not like it's unheard of. So, yeah, it's about making the experience accessible. And I think, as an organization, we've also tried to make that content accessible in different formats. So using YouTube using social media, the way that we designed the magazine is very kind of excessively focused. And it's been a big learning curve to produce something where you feel like everyone's needs are acknowledged and and it's literally not perfect. It could never be, but we do try our best.
Nora Logan: 30:49
Yeah, it's ever evolving. Like all of us, right. So on your website, it says ABL zine seeks to increase representation for disabled and chronically ill creatives, young people and communities, both online and IRL. ABL encourages dialogue and visibility within the topics of disability, health, illness, and injury, as well as encouraging thought and awareness around key issues like accessibility, community care and representation. Our aim is to tackle ableism, and discrimination through vivid, informative content, and provide opportunities for those who may have previously been stigmatized or unwelcome in creative and cultural spaces. Can you tell me a bit about the different arms of April and how you've been going about increasing visibility for disabled and chronically ill creatives beyond the magazine,
Unknown: 31:45
it's been a journey. And it's, it's very personal in the sense that I've struggled as, quote, a founder, an entrepreneur, an editor, to just rustle up recognition, support, financial investment, to find teams of people that are willing to work on this on a voluntary basis. You know, I'm not somebody with inherited wealth, generational wealth, wealth, medical, essentially, at the time that I got put into this project, when I was working as a stylist, half of it was for free, you know, because I lived in London, and it was possible for me to do that at the time. But, you know, I think a lot of us maybe in their late 20s, early 30s, that worked in the fashion industry, we did so many unpaid internships, and so lots of unpaid work in order to get into this industry, that, you know, coming outside of it, and wondering, how am I going to fund this? Like, how am I going to create it, because I can't do it all alone. And there have been a lot of people that have helped and supported in different capacities, but that's constantly evolving. And I think that the older that I've become, as well, the more that I recognize the need for financial security and equitable pay and understanding this idea of like emotional labor and activism as forms of labor that need to be supported on a financial level in order to make these changes in society that need to be made. So I'm definitely more and more interested and pro, finding employment opportunities for disabled people and financial opportunities that are also mirrored in representation and visibility and, and this idea of being hard. So we work and have collaborated with a variety of brands and companies over the past few years. On an independent level, I do diversity and inclusion consultation. Now, occasionally, I work as an editor on different types of publications, whether that's for charities or arts organizations that are working with disabled communities. I'm also have worked with the NHS and there's things like different research projects and things like casting for disabled models. And, yeah, in this way, I think that we try to bring the disabled community with us as we sort of journey back through these industries and try to scope out and see where we are in terms of disability inclusion, because I think we're still really really have a long way to go. And it's nowhere near where it needs to be. So also just sort of like I get emails all the time asking me to recommend And, you know, people for certain projects or other sorts of zines, and publishing, works from other disabled people and stuff. And to me, it's really important that I don't try to monopolize any opportunities for myself or just for the people that I like. It's important that, you know, the most vulnerable and the most sort of oppressed of us are also getting equal access to these opportunities. Because I think that, yeah, at least in the early days of Atrazine, I really was aware that physically, I didn't look disabled, verbally, I didn't sound disabled. But there is no like indicators, essentially, of my disability by what I tell you to now invisible. Yeah, I mean, I do like use mobility aids, in an ambulatory capacity, it's that my disability is very fluctuating. It has so many different types of experiences for me as an individual that, usually when I'm at my worst, you won't see me. And I think that's true for a lot of disabled people as well. And as part of how we remain ostracized from society. But, you know, I knew that there was a lot of privileges that I had. And so my voice was definitely not the most important.
Nora Logan: 36:17
I love that you're also approaching it, and the work that you're doing and who you're working with, in a way that is substantive, that there's substance behind how you're recommending people and companies to work with disabled people, rather than it just being, you know, ticking a box for it to look a certain way. Have you ever experienced sort of any pushback from companies in terms of how you want to go about inviting people in? Or creating more accessible spaces? That sort of thing?
Unknown: 36:53
Yes, it's really hard. Actually, I think that there's a couple, you know, companies that strike me out is ones I've worked with, I might not necessarily want to work with, again, I think that there's maybe a lack of understanding in society around access accessibility and the benefits of having it in the first place. You know, whether you think about structural and accessibility and the idea of having disabled lose, having ramps that give you access into the space, lifts, things like this, that, you know, sometimes because of how society has been structured, and the lack of representation for disabled people that has really stretched on for centuries at this point, it feels like there's a lot of people having to go back in order to make those changes, as opposed to, oh, it's something that we can just do moving forward. But, you know, it is a really complex issue. And there's a lot of different types of accessibility, and things like conflicting access needs that are maybe a bit advanced, to be honest. Yeah. And with regards to this, yeah, yeah, I would say that there's pushback there of kind of like, okay, but we were just doing it for this project, or we're just going to be making it accessible in this one way. And we don't necessarily have the budget to do anything else, or the time or the whatever. And I'm thinking, you're a whole like conglomerate, and I'm an individual person with chronic fatigue and chronic pain. And I've built up this whole organization and publication with no money, no investment, and no structural business support. And if I can do it, what the fuck is your excuse? You know, it's just maddening. And like, there's people that have consistently come back to me time and again, expecting me to do things for free, when in reality, it's to benefit their business. And I'm honestly like, don't tell me that what I have to say is important, if you yourself, don't even acknowledge my right to exist and survive and capitalism. It's so transparent to me. And I think people maybe feign a bit of like incompetence with stuff like this, when in reality, they wouldn't agree to do that work for free, and they're sat there on a salary that I'm not entitled to. So yeah, I think I get really, really flustered. And, and it's part of this whole idea of picking your battles, too. Sometimes it's just too tiring. And I can't be bothered to educate people, you know, that have already shown that they're not that interested. So I think, again, it's like I'm not really an advocate for call out culture or things like that. i Yeah, call in culture, I believe it's something different. And also, I think there's a different level of expectation we should have for individual As opposed to like organizations and big companies that have a lot of investment and the structural ability to hire consultants and to have, you know, I don't know if you saw this thing at wireless festival with the disabled platform being like pretty much outside of the festival itself. And the fact that there was probably no disabled person in the room when this sort of like structural planning was being put together for how the festival was going to function. And I think we have probably come quite far with this idea that diversity is about race. And that's something that most businesses factor into the hiring processes and kind of HR, things like this, but we still don't really acknowledge disability enough for most companies to consider it as something to watch out for.
Nora Logan: 40:56
And then it seems a cultural thing, right? It is a cultural thing living in an ableist society, and a lack of imagination, because the disabled community are extremely imaginative. Yeah. Paired with a lack of imagination paired with a lack of interest, right? Yeah. So it's something that your agency, it's so incredible that you're going in, and at least making these suggestions. And also, it's ramping in creative industries that nobody wants to pay anyone, especially if it's a freelance capacity, it's something that I've experienced for my entire career.
Unknown: 41:36
Yeah. And it's an issue, this idea that of like, you know, having to go backwards to make changes that should have been there from day one does so many examples of Virg example, Instagram, up until last year, there was no way to automatically caption content in a way that may have been familiar to people that use YouTube or create video content. And because it wasn't implemented in the structure of the app, from the beginning, it took years and years and years of extra development to bring in this feature that could have been easily embedded into the coding from the get go. And there's lots of other examples like that, where, you know, we think of something is being a disability related access measure, like captioning, but you don't need to be deaf to benefit from seeing caption content, you might be at work, trying to stealthily watch a video on your phone, and benefit from being able to read that content. You know, and there's countless and countless examples. And I think, not to toot my own horn, but at least I know of this stuff. And I can actually bring it to people's attention and say, look at all these different examples. This is why actually is better to be inclusive from the beginning. You don't realize it now. But you're making your business, your environment, that much more inclusive, and you're going to increase your business size your your audience and your revenue, by having it like this, as opposed to being exclusionary. And just, you know, making up excuses and making more and more and more excuses as to why you won't act,
Nora Logan: 43:25
essentially, in a Vogue interview in 2020, you said, we are the largest minority group in the world, and the only one that anyone can become a part of at any moment. So we need to be asking ourselves, Why are we always left out? Too many people have gotten away with not addressing disability as a social issue, because they can you could say that about other forms of discrimination. People ignore it, because they can. That does not mean they should. So it stands to reason. Exactly. To your point, what you just said, companies making things more accessible, you're reaching more people, because it's the largest minority group in the world. And I'm curious, because this question of uncomfortability and, and people feeling uncomfortable around it. And it's an a question and open question and inquiry that I asked myself consistently. How can we shift that uncomfortable feeling that people have how what are things that we can continue to do to help people to feel less uncomfortable around these things, with also acknowledging that it's not necessarily our job to do that emotional labor
Unknown: 44:42
for people? Yeah, I think the area where I've seen the most sort of change has been in TV and the fact that there are a lot more disabled people working as presenters and bringing disability into people's living rooms and I think that is hugely important and hugely affects the kind of that feeling of discomfort that people can experience when they see a visibly disabled person. You know, I think one of the important things we've tried to do with angels in has represent disability as a spectrum. And not to like and disability with just having a visible disability, not just being a wheelchair user, not just having sensory impairment, we need to be creating awareness for all of the different ways that disability can manifest in order to really create inclusive environments. I, as somebody with more of a less visible disability will experience different forms of discrimination, and I'll have different types of experiences than a wheelchair user will. And they couldn't be more different sometimes, you know, and we really need to pay attention and learn about both of those experiences. So I think, you know, representation is, is never enough. It is just one element of like making a little bit of progress, I suppose. How can
Nora Logan: 46:07
we make people pay attention to? Yeah, disability,
Unknown: 46:11
I'd say this is a controversial opinion. But I think more people need to become disabled. And I think it's happening right now. And it would be ignorant to not use COVID, as an example of a mass disabling mass death event that is currently ongoing, and being perpetuated through a lack of COVID protections in society. You know, this podcast isn't necessarily about eugenics. But there are so many Genesis practices being rolled out in front of our eyes, and even individual choices that being made in terms of spreading COVID, and a lack of regard for the people that it can impact the worst. But we're seeing so many people becoming disabled through long COVID. And these sort of ongoing symptoms that people can't seem to shift. And I think as a society and living in like capitalism, we're experiencing a lot of fatigue, for this sense of productivity that is drilled into us and really, like, it's not a need in society to be as productive as we are. And we're not necessary, or maybe it is, but we're not necessarily being productive in all the right ways. Yeah, we're productive at making money for companies. But are we productive at farming our foods, and making sure that those foods are healthy for children, and essentially those that need to be fed, which is all of us. And for me, at least I've experienced a form of environmental disability, I have chemical sensitivity. There are really common preservatives that are used in food and cosmetics, hygiene products that I need to stay away from in order not to develop cancer, for example. And that's something I know because I've been made sick. You know, not everybody knows that. Yeah, and not everybody knows the invisible ways that their bodies are struggling. And mental health is another branch, I suppose to disability that is as important as physical disabilities, we need to be exploring ways to make ourselves happier, as a society, less dependent on, I guess, harmful forms of this idea of disconnecting from our experiences, because we're experiencing trauma. You know, I know a lot of people whose parents have died, maybe not both of them from COVID, but even losing one parents COVID. And then seeing the government tear away all forms of protections even for in hospital settings. You know, it's It's barbaric. Yeah, it's really, we all want to move forward. We all want to enjoy life. And I think that we just need to care about one another in those moments where we decide how are you going to do that, you know, and we're not all disposable. And I think that sick people have been treated as disposable in society for so long. I like to think of my voice as important. But if someone doesn't know me, doesn't know my experience, they wouldn't necessarily usually listen to My voice and realize, through our lived experiences, how much we gain, how much insight how much creativity, how like the ability to adapt, and the things that we learn. We if we had if we'd had a COVID task force, put together with like, the most influential, disabled people in society, potentially things could we could live in a utopia Yeah. Or at least have experienced far less death and far less destruction, I suppose.
Nora Logan: 49:57
Yeah, I think a lot of us looked around in life. To 2020. And I could see exactly what we needed to do, because we'd already done it before. Then seeing how it's been rolled out. And what's happened in the interim has been, in some ways at the very beginning, beautiful, but then shocking and like you say, in some ways barbaric.
Unknown: 50:21
And it's the most vulnerable people in society, you know, that are continually hit the hardest. And, you know, I think there's a big sort of judgment and harassment of disabled people as being these like benefit frauds and lazy and we don't want to work and we don't want to contribute to society, we just want to skive off other people's hard work. Say that to all of the working class people that can no longer afford to take, you know, sick pay from COVID and have to go and expose people to COVID and work environments because they can't afford to lose out on money, there is no follow, there is no sick pay. Those people are working really, really, really hard. And there's other people that are working really, really hard just to stay alive. And if you think those two experiences are that different than you've obviously never been sick, or disabled for any significant period of time in your life. Yeah, I think it's so far more common than people believe it to be. And it's just this idea of like shoving people away, there's someone who used to always say to me, it doesn't give them energy, it doesn't give them energy. It's maybe more of a spiritual concept. But this idea that people don't want to actually it's the founder of the nightstand collective. There's an interview between her and another journalist in the US that has me, both of them have me but also, like me, endometriosis, other forms of war to autoimmune diseases, pain diseases. And they were, you know, asking, you know, why do people think the nightstand Collective is so depressing? You know, why are people so critical of it, and don't see the value in it, you know, just pictures of people's bed stands, it's just images of like that previous private times, you know, and times that aren't necessarily for everyone's exposure. But she just kept saying is because it doesn't give them energy. People don't want to hear the hard things, they don't want to know how much you've suffered. They don't want to hear about how horribly you were treated by society for something that wasn't your fault. Because it doesn't give them energy, you know. And it's, it's true to a certain degree,
Nora Logan: 52:38
I think it's true to a certain degree. And we should say that the nightstand collective was an and is an ongoing exhibition of different photos of people's nightstands, people who are chronically ill, or disabled, they're really beautiful photos, there's so much the nightstand for me was my whole world for so long. And I think showing people those images, and then also talking about these things, connects us in a way that's so needed, because there are, like we just said that it's the largest minority group in the world, there are so many people who will identify with these images, and also talking about these things. And I understand the sentiment that it doesn't give them energy of putting people away to one side and not looking at it because it's too hard. But more and more people are becoming disabled, more and more people have experienced illness. And I like to think of it as this large, beautiful community of people who need each other in order to be seen.
Unknown: 53:47
It's it's a portal and acknowledgement of existence, outside of the norm as society sees it. And I think, you know, society told us that we're all white, you know, yeah, society told us that European beauty standards are the best. Society taught us that, you know, to be good at in school, you need to have a really good memory, you need to memorize like quotes from Shakespeare and all that sort of stuff. Take that into your later life and those the way we judge people through like education, or in in business environments, hiring practices, they can be like, heavily influenced by racism, and other forms of discrimination. It just needs the research, you know, to to prove those things. And I think as a society, we're far more aware now of unconscious bias and what impact that has in lots of different areas of society, but with with the nightstand collective. It proves to us that we exist and we actually exist in maths and that the experiences that we're having when we're siphoned off by society and isolated, are still as real As everybody else has lived experience, and what the nightstand collective does so well is, really values emphasize the value and the takeaways from that isolation and that illness because you don't stop learning, you don't stop evolving, you are just on a different trajectory. And actually in a different type of world, that could be the thing that saves you and the thing that separates you from the rest.
Nora Logan: 55:28
Yeah, I mean, it doesn't stop you from being in the full spectrum of your humanity. In some ways, it expands your capacity to be human. So that brings me to my question around your own chronic illness and disability. If you lived in a world that completely catered to your me and other conditions that you've been diagnosed with, since your initial diagnosis, what would that look like?
Unknown: 55:55
I would really love a teleportation device. So anybody can create that, for me, that would literally change my life. But in terms of an eye, realistic, ideal world, I think that we need to evolve from capitalism. With capitalism. I'm not here to talk about my economic beliefs, I suppose. But
Nora Logan: 56:24
it's all part of it
Unknown: 56:27
really, like, really affects how we live our lives. And I think that, through my own privileges, I have been able to work and not work and sort of see place those things side by side and understand what's important, what I've been able to take away. And I believe that the less pressure we put on people to work, the happier we'll be, and the more we'll work. I don't think that like bullying and beating people into this form of productivity, I don't believe in a five day working week, I would believe in a four day working week. And more than that, I believe that a universal income would make a huge positive financial difference to this world and the way that we are each able to survive within it and have an equal access to the things that we really need in order to thrive. And I believe that disabled and sick people, I believe that single mothers, I believe that matriarchs and people with large families, people with families with diverse needs carers that have to look after elderly parents, grandparents, aunts, Uncle should all have access to food, and that ability to heat their homes and ability to go out and have joyful experiences in that communities. And that we shouldn't be siphoning off something as universal as caregiving into this arena where although all those people should be poor, and all those people should be judged, and they shouldn't be given a livable income, because what they're doing isn't valuable enough compared to going and working in a bank for like, no, no 12 holidays or whatever. We really undervalue a lot of different areas in society, where we show our humanity and where we connect and the path to one another. And I'd much rather live in a world where people were looked after collectively, then one where you have to be incredibly privileged and financially secure, to have access to nice things in life. It just doesn't, you know, it doesn't have to be about diamonds and fast cars. It's really about being happy being content, being with family, being with friends, and having good food, and an ability to enjoy life
Nora Logan: 58:52
and teleportation until
Unknown: 58:56
I should be working on instead of a magazine.
Nora Logan: 58:59
So Claudia, what's one thing that you do to keep yourself creative each day?
Unknown: 59:04
I have a lot of hobbies. As a creative person. My hands are really important to me and working with my hands on a daily basis, but I have developed chronic pain as a result. Incredibly debilitating chronic pain in my arms. It's the same with typing. You know, whenever I'm really stuck into a project or feeling obsessive about something. It's like my body's like, stop, slow down. Yeah, you need to you need to regulate yourself, because overworking this, even if comparatively, it doesn't seem like that much. You're my body just doesn't function in the way that I'd always like it to. And also, I think that one we shouldn't necessarily believe that creativity is a daily practice. I think it's important that we sometimes give up and go through experience instances where we are not always being given the energy, you know, sometimes we actually need to let it all go. And then finally, for me, my personal practice, there have been a lot of days, where, you know, wearing the same tracksuit from Monday to Friday, because I haven't really done anything, I haven't really left the house. But something as simple as like picking out my jewelry, maybe putting on a little bit of lipstick, to go to the corner shop. buy snacks, it's the best place to pick Well, I mean, we COVID Stop halftime anyway, it's my own way to kind of give back to myself and connect with those other forms of my identity that are rooted in like aesthetics and imagery and things that do give me life and give me the energy.
Nora Logan: 1:00:54
It's beautiful. And finally, what's one phrase or saying that you always come back to,
Unknown: 1:01:01
I don't know if if there's one like there's been throughout my life or anything, but in terms of my most recent internal discoveries, and where I'm at right now, I think that a phrase that I say to myself, a lot goes along something like this, nobody can kill your joy, and nobody can steal your peace, or nobody should have the capacity to steal your peace, kill your joy. I think as disabled people, we are really not encouraged to find happiness and to live happily. And I don't think that we especially in like social media culture, and this idea of scrutiny as well that we're under as disabled people, either from like a governmental perspective, or your neighbors, it just always kind of feels like there's a sense of surveillance. And it's something that I've really struggled with myself, this idea that you can't just be that you have to constantly be an activist, or advocate, and that you have to constantly be showing your disability and proving your disability to get the help, and the care that you need. And that is just always feels like so much work. And there's not really that much space for just being true to yourself, and prioritizing what brings you happiness, and what brings you joy, peace, a sense of fulfillment. Those are the most important things, though. And so I think you have to really tell yourself, that no one's entitled to take that from you, regardless of what you're experiencing. And I know that sometimes it's ourselves that we don't give, allow ourselves to be happy. We don't allow ourselves to, to find joy. I mean, it's such an active thing that one must do, I think is you know, especially in capitalism, we're not encouraged to find our joy, unless it's like through escapism. And so really connecting inward and just feeling like, no, no one has the right to take that from you, regardless of what you're experiencing. So give as much to yourself as you can, for as long as you can.
Nora Logan: 1:03:17
I love that and just the right to just be and also finding joy in hobbies. I feel like everyone creates their hobbies into side hustles. And we're allowed to just do things for the fun of it.
Unknown: 1:03:34
Yeah, yeah, exactly. And just to be, I don't know, it seems like a lot of people a lot of different things will will tell you that actually, that's not okay just to be to exist. You don't have to be giving back all the time, and feeding into a cycle that harms you political and economic beliefs coming through a little bit.
Nora Logan: 1:03:58
Well, thank you so much for being here today. Claudio? How can people find you? How can they engage with your work?
Unknown: 1:04:04
You can follow Abel zine on Instagram. You can find us online Abels n.com. And you can follow me on my personal account, which is little get Adam Lal G double R, er A?
Nora Logan: 1:04:21
And can you just take us out quickly tell us the origins of that name, and what get it means warrior in Spanish.
Unknown: 1:04:28
I'm half Mexican. And so for me, especially when I lost my sense of identity and in London, I really began to feel more and more like maybe that's where I'll find healing and where I'll find joy by leaving the environment that made me sick, and finding myself again in the environment of my heritage. And also I think that there's a lot of kind of like inspirational quotes that disabled and chronically ill people are sometimes subjected to threw around this idea of being a warrior and being super, super human with the Paralympics and all these different types of ways that we make disability acceptable again. And I think we all actually go straight to that place when we're first sick, we're like, either this is literally definitely, it just needs to end. Or, you know, I need to be this idea of the good patient, the good cancer fighter, the chronic illness warrior, and this and that. But to a certain degree, I think that being a warrior, it's not like a choice. It's something as a result of the circumstances that you find yourself in this idea that you have to fight regardless of whether you're inherently strong or not. I mean, I think we all are, but there is a different level of fighting that you have to do internally and externally, when you're sick. You feel like you're fighting your body for ownership. And you're also fighting for recognition and to be heard and to have your experiences acknowledged. And so regardless of where I've been in my illness, health journey that is still happening every day. So it's a bit tongue in cheek, essentially.
Nora Logan: 1:06:15
But thanks for sharing with us. Thanks for being here. Maybe we'll find out and get it as warriors as we continue on.
Unknown: 1:06:22
Yeah, thank you for having me.
Nora Logan: 1:06:26
That was our show. So like once you Dad, thanks so much for listening. This episode was made in collaboration with some support from Soho House. Many thanks to Jamila brown been trumped in Olivia Garrity to Gaul, Mohammed, Erica B'nai and to Vandenbroucke our illustrations are by Renee Fagan. And if you like what you hear, please subscribe. Leave us a review, or rate us on Apple podcasts, Spotify, or wherever you get your podcasts rating us and subscribing really makes a difference. You can find us on Instagram at your life once you Dad where we talk about what's coming up and how we probably need to rest more. Thanks so much and see you next time.