Transcript: ‘disabled joy and empathy, ableism and attraction’ with bella milroy, steph niciu and laura yates — part 2
LY: In this podcast series you will hear lovely discussions between Bella Melroy and Steph Niciu facilitated by me, Laura Yates, one of the producers of the At the Library programme.
Bella is an artist whose work explores how we touch and make contact with the world around us. With the handheld being of a particular significance. She makes work about making work and being disabled and not being able to make work and being disabled.
She’s interested in the duality of everyday existence, and how things can be both beautiful, painful and interesting, and dull.
Steph is a writer and journalist who has a great mind and a special grasp on empathy. She’s currently working with the Swan Centre in Bootle who support women in a variety of ways. And as a podcasting volunteer for the At the Library programme, supporting Laura and the team to develop interesting audio content relevant for our community. We touch on disabled joy and empathy and many, many other aspects of life led as female artists and writers with a disability.
LY: What I was going to say to you was last time (Part 1) we really discussed a lot to do with you both and your lived experience whereas the social model is more about you defining how your interpreted by society. Last time, we also talked a bit about disabled empathy and joy. I wondered if you could expand on those two things for me?
BM: I think disabled joy is an incredibly exciting concept for me to think about, and I’m like, again, you know this kind of talking about like putting with these little kind of like fragments of domestic experience in a public setting, you know, disabled joy is, that in these things of the Sick Day Banquets, you know, taking a moment of your life which is incredibly stressful and difficult and full of hardship, where you find those little things that sustain you and bring you joy and bring you pleasure. Yeah, putting that in those spaces that hold the kind of wider connecting ritual. It’s been it’s been wonderful and I think, disabled joy is really hard to express, isn’t it Steph, because I think people find it hard to get their head around but like you can say that I love being disabled so that’s really, I mean, I say I saying that now and I’m like, even myself I’m a little bit like. (laughs)
SN: I agree with that I think that as well but like the way that the media treats disabled people can be quite conflicting and problematic, because there’s a lot of negativity around disability, and the disabled lived experience. The fact that if you’re disabled, then your life must be rubbish. You mustn’t really have ambitions or goals or anything that you want to do in your life or that it’s really sad or like one dimensional. But actually, as we both know it’s completely the opposite, and there’s a lot of fulfillment in being disabled and I found really that as a disabled person and woman as well that you know I can empathize with people, a lot more I can understand people’s experiences, a lot more people that have different experiences to me. I think that, you know, especially with the Social Model it actually gives you the agency to be like, I define who I am, but I can also not define myself. It just depends on what I want to do but like I said the disabled joy also comes from accepting yourself too, and just being
okay with being disabled, all of the aspects of your disability. I understand that it’s not, it’s not always easy to be disabled and there’s a lot of, you know, barriers and obstacles that we face in everyday life. I think your attitude is really important when it comes to that. And I know that, like, over the past couple of years, in particular, I’ve like tried to cultivate a really positive attitude and outlook from myself on my own disability.
BM: I think so much of that for me comes from finding a community of other disabled people too. That’s been a really, it’s been a total game changer for me in terms of like finding that tribe of people that hold those similar experiences to you and understand, like, even just like language you know like the kind of language of, of how you articulate and express those things and knowing that there are certain experiences, even your closest, closest, closest non disabled friends can’t ever no and so when you find that those kinds of people that, experienced that. I think that kind of feeds itself in terms of finding joy and having, like, loving your disabled identity. It is so it is so complicated and I think for me, I, you know, I love being disabled like it’s a difficult thing to even say because, you know, if I think about just this year like it’s been one of the most difficult years, in terms of my health has been very really, really, really, difficult and so saying that, it sounds like a contradiction of that because it’s like, well, this is been, there’s been lots of moments that have been very, very bad and not joyful and difficult, but I think that’s what’s really important about being able to express it though is knowing that it’s it, you can you can hold all the other aspects of your life in the same way you know and you don’t just have to.. you say you love being disabled does it like discount all the hardships that come with
that.
SN: No, not at all actually it’s like you saying that validates those experiences. I think that’s really important and the fact that, you know, being disabled and having that identity, it’s extremely complex as you say. I think one of the great things about being disabled is that you’re not only really empathetic, I find, but also very resilient as well like this, I know this is as a wheelchair user it’s like you know you come across discrimination in your everyday life, you know, whether that’s low level or, you know, a little bit more advanced but it’s usually like low level discrimination, but it’s just like, you come into contact with that and then, like, it means that you have to approach things in a certain way and I think that if you ever you let yourself be affected by every little thing, then it would really impact your mental health in a negative way like I think that I found that. A lot of the time I just have to sort of numb myself to that, because if I keep, you know seeing those issues over and over again and I can get quite down about it but then you do have to kind of recognize that it’s part of your life but at the same time there’s a lot
of positivity, that comes from being disabled,
BM: I think what I really love about finding that kind of self acceptance in yourself, is that it used to be deep and not just consider it really deeply invested in the essentially the welfare of other people, like, I you know, I have, I have to consider my access needs all the time and all these different spaces. I want to do the same for everybody else like I want everybody else to, to feel that their needs are considered and met and supported, and it’s this really lovely kind of thing to foster within all spaces that again are totally translatable to non disabled experiences.
SN: Yeah, definitely.
BM: That’s a real bonus of that.
SN: That’s really important what you’ve just said: the fact that, you know, like our experiences as disabled people like the empathy and resilience and those sorts of qualities that we have can easily translate to non disabled experiences. And I think that’s really important to stress because it’s not just an individual experience or a group experience in terms of, you know, just disabled people like non disabled people can be included in that.
BM: Definitely and that’s and that’s what’s really exciting about Soft Sanctuary is that it totally centres disabled experiences, it works exclusively with disabled creatives and yet is absolutely across, you do not have to be disabled to understand the things that are being explored in that it’s a Universal concept in terms of finding care and comfort and ease and solace in your everyday life that’s a universal thing and I like that about it because those experiences are told from a very non disabled angle. So the takeaway from it is, is to be inspired, or to be like, oh you know, how lucky are we that we don’t have to deal with that stuff. You know, that’s just so, so demoralizing and so pitiful, and it’s really lovely to be able to just remove that whole thing from, from what what’s being explored here and just be like, yeah, there’s the takeaway is everybody’s universal experience of how we how we look after ourselves you know.
SN: I just wanted to say can you explain what internalized ableism is for the viewers.
BM: Okay, explaining internalized ableism. I would define internalized ableism as the
taking on every kind of way of living as your absolute most capable in terms of both abled is where you want to be. So, illness, disability and mental illness, all of that is not right, wrong, and we all have to do as much as we can, we have to try our absolute hardest to be as well as able, as we possibly can. And internalized ableism is just how we absorb all that and how we have to take on those really unhelpful tropes of what a good person, a good body is. You don’t have to be disabled to have internalized ableism for sure I don’t think.
SN: I was born with my disability. So for me the experience is different to yours in that way but I think that I struggled with my disabled identity for a very, very long time like throughout my teens and early 20s. And I think it’s such a big thing actually that you have to come to terms with yourself as a disabled person, and how you relate to yourself. And actually the fact that your disability is only one part of you who you are. And I think that the internalized ableism I felt iIn the past, is that I’ve always had to show people that I’m doing really well, and achieve a lot, and that I can do a lot, even though I might be in a lot of pain, or I might feel really crap about myself, what I’ve always got to do it with a smile on my face to show people that I’m okay with the reality of it is no, I’m not and I do feel bad about myself, and who I am. It took a long time for me to actually like to shift that perspective. When that happened I was like, I don’t have to be like this!
BM: I think that’s that’s a perfect definition of internalized ableism is so if you’re the most abled most well self is the goal is the whole is the peak of what we are all trying to be. Then, and you are disabled and you are unwell, then the only way that you can be unwell and disabled, is if you are trying all the time to get out of that state. You’re trying all the time to be as nice. And as palatable as possible to those around you, and you are, yeah you’re doing, you’re striving for excellence and all the time because it’s a kind of, it’s a way of combating the kind of negativity of your circumstances. Once you realize that that is internalized ableism it is quite profound isn’t it. I felt that same thing, there’s certain phrases I used to say to myself, how my life was and how I you know things needed to be different and things and I look back on that and I was like, wow, that is just like you know me saying that my life was not good enough.
SN: Not just your life but you are in a way not good enlugh and what a shame to look at life that way because actually, if, you look at yourself and like what you’ve achieved you’ve done so much to be proud of, but also the fact that we have a disability, you know, that sort of health acceptance has made me realize that I don’t need to push myself. I don’t need to prove myself to other people, you know, so it’s like, I need to work really hard on something to show people that I’m able to do it but no I don’t feel that need anymore.
BM: Because so often if we engaged in that kind of like doing things 10 times as much as everyone else even it actually costs us so much it’s such an expensive way of doing it and I don’t mean just monetarily I mean like, physically, emotionally, mentally and so costly and it’s, it’s really damaging you know it’s really it’s really unhealthy and it’s amazing when you kind of come to that place like I really do feel like for me, it took me until about three years ago to fully, just like stop, quote unquote, ‘trying’ (laughing) it was just so totally liberating because, you know, it’s just, you realize how much of that you carry like that and then when you stop you’re like, Oh I can just be like this and I’m alright!
It’s such a complicated thing because it’s something but it’s not when it when I say they are you stop trying and then I’m fine, it’s something society is telling you all the time that you your body isn’t enough and you have to kind of constantly battle those those feelings I mean in terms of, like, I think, for me a exciting concept to explore in that way is the concept of laziness and and leisure. Leisure and laziness within, within the disabled experience is really really complicated because, you know, we don’t really get to be lazy because, you know, so much of laziness and leisure is is structured around these very defined periods periods of time and also like very prescribed activities, something like, you know, like a duvet day is like totally fine and really lovely and people are all let’s have it you know that’s how to do it, it’s a really like culturally socially acceptable thing to do. And yet, being unwell and being in bed for long periods of time is really not okay. And if they’re the same thing. Well, they’re not the same thing in the sense of why you’re there because I think I mean that’s where a lot of capitalism comes into this because, you know, people are allowed to be lazy and enjoy leisure time when it’s punctuated between work and so I think that’s where it comes into it as well. Another another layer of internalized ableism.
SN: I was just gonna say about what you said Bella, which was really important, the fact that, you know, like we need to give ourselves permission to be lazy and have leisure time, and to look after ourselves as disabled people. Not just disabled people, non disabled people too like as we’re talking about the disabled lived experience.
BM: Yeah, definitely. And I think, again, in terms of like touching upon the way in which capitalist structures of work and things like that infiltrate these these very, very like big parts of internalized ableism that is in that way is because, you know, the element of rest for us is so complicated because, again, like we’re having to try so much harder rest becomes increasingly difficult to obtain because we’re often rest for others is burnout, or illness because we have to push ourselves so much further so I that’s something that I know I really struggle with for me, my, my days off and not really days off they’re just being unwell and so it’s really complicated. So to be able to prioritize your body prioritize your needs like that is, it’s really, really, really difficult, but totally, totally necessary and important like that. Yeah, so it’s a tough one definitely.
LY: And you know what else is interested in actually now you’ve said that is like the female body as an object of like, you know, it’s just an attractive thing I bet that that intersects with, you know, with being a disabled woman as well you know, and the desirability of women.
SN: And I’m, I mean, I don’t know whether you agree with this Bella, but I think with disabled people on the desirability of our own bodies or not, ourselves as like sexual beings especially it’s like, I think of myself as really desirable, but I don’t know whether society does. You see that actually on on the TV and in the way that disability is portrayed in terms of sex and desirability, and even disabled bodies it’s,not really reflective of our own experiences.
BM: No, no, no, not, not at all. Not at all. And I think it’s, yeah it’s incredibly complicated, and again like it’s just another layer of, of how our bodies are valued in that way. I, again, I think my experience is quite particular in the sense that I was already with my long term partner when I became a well, and we’re still together now, so navigating my kind of sexuality and understanding your value in this relationship and so your value in those kinds of ways you connect with other people is just as valuable, but having to operate in a different way. Nobody tells you how to do that.
LY: You could do within the manual or something or, you know, for young women, coming into their adult lives could access the advice and support of mentors.
SN: I found that there’s nothing really, you know, out there for disabled people in terms of sexuality, and like how to navigate your sex life and dating and things like that.
You just feel that that it’s something that you need to figure out on your own. A lot of that is like a universal experience but then there are some really specific experiences to disabled people like how do you navigate a relationship with someone who has specific needs, physical needs and if you’re with a non disabled partner for example how you’d talk to them about that how you communicate.
BM: I think what you’re saying there is like you’ve got your own baggage to try and unpack in terms of knowing your value, and knowing how you contribute to all your relationships both platonic and romantic and all of those ways. And then you have to navigate, especially when you’re with a non disabled partner you have to navigate their ableism and then all of their stuff. It’s this constant trying to figure all of that out because, not only do you not know how to do it you’re trying to figure it out. Often it requires a lot of learning and understanding on their behalf. I guess. Again, it kind of goes back to the way in which the programme tries to centre disabled experiences, whilst making them completely accessible and universal to anybody that encounters them and can see themselves in those in the things we’re trying to kind of talk about, and offering them up in a creative space is inherently going to just like make people talk about it, they’re going to have those discussions around, OK we’re talking about these disabled experiences here but it’s really the kind of creative process of, just a shared meal, or like you like you say one of the kind of artists engaged workshops, it’s a catalyst for discussion around how that person fits into this thing we’re talking about. And, yeah, creativity in that respect is a really powerful catalyst in getting you to think about things in that way, you know if you started talking a lot about internalized ableism and like disabled experiences right from the get go like most people will be like A. that’s really boring and I have no idea what you’re talking about! I think disability in particular doesn’t exist for many people, disability as a concept, it doesn’t really exist in a lot of people’s lives. Even for disabled people. There’s lots of people that I know that could it could identify that way but but don’t, and that’s perfectly fine as you know this is again a really complicated thing and it’s not about, people needing to but it’s is about the way in which disability in societies is so erased it’s so pushed out.
SN: I think that, in terms of creativity, what you were saying about the (Soft) Sanctuary. I think that it’s just really important for you to be able to give people that space to just like, explore their feelings and emotions creatively. I think you give them the opportunity to do that. And I do think that’s really good and there’s also there’s no, there’s no judgement, as well I think it’s really important when you’re being creative to be non judgmental. Just to let people explore in the way that they feel suits them, and makes them feel comfortable. I think that’s exactly what the Soft Sanctuary does you know, you can see that people come together a lot more because of it and are able to have conversations that they wouldn’t normally have, like you don’t feel like you have to speak about a particular thing. Also the fact, as well as that is that, you know, disabled people, and disabled people’s lives at the forefront of this. So you actually have allowed disabled people to lead this which is really, really important to give them the agency and the power to do that. I do think it’s really important because creativity is such a beneficial thing for your mental health. It’s great, really rewarding for you.
BM: Yeah, it is because I think especially within like Community Arts there’s so much well meaning, that goes into those kinds of concepts and, again, all of this kind of stuff’s driven by, you know, in terms of funding like who’s the audience what are they getting out of it all of that kind of stuff it’s really, really difficult to, to not not be concerned with that all the time but I think that’s why having it in the library setting just removes all of that kind of peripheral stuff, and doesn’t have you kind of too concerned about the ways in which people are engaged in just the simple fact that they are. I remember one of the meals, it was someone from the, from the care home across the road, wasn’t it, and she just come there for a lunch because the food at the care who was rubbish, it was just a really nice kind of that we felt that was, that was really good to think that she just slipped into this this this environment and was that was what she was getting out of it and. And just so happened to be chatting amongst other people and these conversations were happening.
SN: Well, I just think that it’s really important, but something like Soft Sanctuary brings that disabled lived experience to the fore, but it doesn’t actually force it on anyone. So it’s something that it’s something that is integrated into the project, but it opens up conversations about disability. And you can also be really creative in other aspects as well, which I think is very important, I think, you know, as, as disabled people. We need to just look at our own identities and acknowledge that we are worthy. And I think that like me and Bella have demonstrated that through the fact that we’ve said that, you know, it has taken us time to actually realize that we’re good enough not in spite of our disabilities – and that we’re actually like really proud of our disabilities, and the fact that we actually really like that part of ourselves, but it’s also an extremely complicated part of ourselves, which we have obviously examined through the Podcast. I think it’s just been really useful to be able to talk about these issues because you don’t normally get the opportunity to talk about them, especially in so much depth, to be able to raise different topics in relation to disability, hopefully will help to educate everyone, whether you are disabled or non disabled,
BM: Yeah, I think what you said there about just, you know, I think that every facet of what we talked about has always kind of led back to the value of our bodies the value of our experience, and as disabled people and I think, you know, understanding that value and knowing it’s worth. Yeah, and it’s just a really really powerful and profound feeling to have isn’t it and when you kind of realize that and know that you know your worth like that is Yeah. I think it’s to be able to hold that value in a public setting like that is, is really, that’s really amazing isn’t it.
LY: Thank you so much both I’ve had a lovely time!
These are part one and two of a podcast in a series created by Bella Steph and Laura. As part of the Soft Sanctuary programme 2020, we’ve included information in the notes of this podcast relating to Bella and steps work with At the Library we suggest you listen to iterations one and two of the conversation between Bella and Steph, and welcome your comments and thoughts. At the Library is a program developed and delivered by Rule of Three Arts in partnership with Sefton Library Service. The work is funded by Arts Council England and the National Lottery. You can join our mailing list by email and hello@atthelibrary.co.uk, or follow us on Instagram and Facebook (@we.are.at.the.library) or Twitter (@the_libraries).