Christine Bylund

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Date of interview: 31st August 2023

Content notes: disability, trauma through disability assessments, bureaucracy, welfare state, ableism/discrimination, eugenics, pandemic, institutional racism, BDSM, sexuality

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Jet Moon  

So, first of all, I wanted to ask if you felt comfortable saying how you feel survivor writer applies to yourself?

Christine Bylund  

Sure, yeah I’ve been thinking a lot about that. Also, this might tie into other questions that you had about my work. But I think I would consider myself perhaps a survivor of state violence or bureaucratic violence, targeted against people with disabilities, or disabled people in Sweden, mainly, I would say, I don’t think…And I think that’s very encompassing, so that that kind of violence is very fundamental to the way I am allowed to exist in the world. So this very…for me, it’s very all encompassing.

But it’s also, I think, an experience that in Sweden, in particular, maybe we don’t talk so much about in survivor terms, or often it’s not described as violence within the disability rights movements, I think there’s some perhaps difference there from the UK or the US context, and Sweden where explicit discussion of violence or abuse within the…the welfare state system hasn’t been understood as violence. I think there’s a few…a few activists, perhaps or researchers, maybe myself included, who use that kind of terminology. But it’s not been widely accepted in the disability rights movement, which I find very odd looking at it from a UK perspective, and I think it also creates this dissonance in in Sweden, where the use of vocabulary that would position disabled people as victims of structural violence is not…it’s very seldom used. 

And it’s also when it’s used perhaps by certain individuals, it’s also very highly debated in the disability rights movement, whether that is a…yeah, whether we should use those kinds of terms to describe even our own experience. And I think that is also…for me, that’s very…because I think it ties into this discourse of, of refusing this kind of victim mentality and all that kind of…I don’t know what kind of empowerment this course but it also leaves this huge gap, of course, in the surrounding society, and the debate and self-understanding as well, where these experiences that I had happened to me that were very violent, and that were carried out by a huge structure, who is supported by financial and political influence is… there’s no language, particularly to speak about that. 

So I think, even though we speak often in the Swedish disability movement about violations of human rights, for example, we don’t necessarily speak about oppression in a structural sense of violence. In that sense, I find it…I’ve used it… I use it for myself personally, when I describe things that happened to me, but I also use it in my research, and I think it is for many in the disability rights movement in Sweden quite taboo to speak about violence in that sense in ways that I find very…Yeah, I find it does something to that landscape of what the disability rights movement is, and what the discussions are, and also the kinds of tools that we can utilise. Also, mostly, I would say, on a personal level, because of course, it puts up structural sort of obstacles in the debate – how do we frame these kinds of violations if we don’t talk about violence, in that sense – but also in an interpersonal level, I feel there’s a huge amount of people who have had terrible things happen to them, due to their status as disabled people in Swedish bureaucracy and there is no way to, to express that in in a way that’s very…that’s accepted in the general disability rights movement. So there’s really a gap between what happens and what people express about what happens.

Jet Moon  

Well, I mean because most of my knowledge about this movement is through, you know, reading things that you’ve written and knowing you, I find it so surprising that there’s this difference in the Swedish movement compared to the UK and the US. And, um, I mean, even not just in terms of disability, but personally, I would think so much of finding language to name context: to understand that. I just find I, I mean, I feel that denial is strong enough as it is without having…. Okay, I’m gonna ask you a question.

So, in the time we’ve known each other, I’ve really seen your work unfurl across so many different forms. As a dramaturg, performer, academic and a researcher. Writing as an academic, you’ve utilised interviews and auto-ethnographies to produce academic writing and analysis within the framework of queer and crip theory. The PhD was on family life and family building of queer… for people with disabilities and the relation to the welfare state. So the formal title was “Anachronistic Living Conditions: Disability, Possibility, and Desire in the changeable Swedish welfare state”. Could you speak to the whys of crip academia? You know, about inserting crip narratives into that space? And then, whether you feel academic has actually become any more accessible over time?

Christine Bylund  

Great question. Sure. I think as well, for this question, I feel much more influenced by the UK and EU s academic contexts maybe rather than the Swedish one, Swedish disability studies field is very different from what we would consider disability studies in the UK or the US. So it’s much more medicalised. It doesn’t have a set purpose to, to include or, or bring forth sort of disabled researchers themselves. There’s not that kind of self-experienced perspective, very few researchers who are open at least about certain disabilities or, or diagnosis, it doesn’t have that kind of activist link to it that most of it does in the UK, and it’s because it’s so medicalized, it’s also often carried out by vocational therapists or physiotherapists. 

And so the branch of Swedish disability studies that I am in is something that we…what we would call Critical Disability Studies then in Sweden, which is also a bit different to what Critical Disability Studies is in the UK, because it’s such a budding field, it’s so…and this is maybe the last I would say 10,15 years, yeah 10 years, maybe that’s a stretch, and then sort of you and your academics like myself, and now some of us are more senior in these 10 years, but also a mixed bag of certain like topics and academic disciplines. So, some social workers and some gender studies scholars, like myself, and other types of scholars who’ve had an interest in, in disability as a social, political, existential, cultural position, maybe rather than a medical one. And I came to disability research and crip theory through the gender studies perspective and as queer theory. I did one term of disability studies in the Swedish form, and then I thought it was awful. 

So I left and then I started doing gender studies and ethnographic courses, so that is also my…and that was also my knowledge base, from social contexts in the UK in the US, so I think I was very influenced by not only sort of an academic way of understanding disability, but also a queer crip understanding of what disability was, from these kinds of circles or communities with disabled people themselves. And, yeah, and I think I did it I…because I think what’s also interesting in my work and my writing is that I was never really interested in, in…in disability as a topic, I didn’t see that being something that I would do when I was younger. So I often say that I was…I entered the research space, or I became a researcher out of need, because I saw that there were these theories that I thought were brilliant in this way thinking of disability that I think is, is more fruitful to the research, discussions, but also has more meaning to the actual lived experience of disabled people’s lives. 

So then I did my, my bachelor’s in Ethnology and Gender Studies, my bachelor’s thesis is on different kinds of crip theoretical topics, and as well as my master’s thesis, and then I applied for this PhD position, because I’d done a small study for a disability rights organisation in Sweden, where I looked into the living experience of people who had their assistance needs reduced or, or their permits taken away fully. And I interviewed them about that. 

And then there were many things that they said that we couldn’t include in that report, specifically, but they talked a lot about how this had impacted family life or their family networks, or close relatives, close friends and the kind of strain that it puts on, on already existing relationships, but also this fear of entering into to relationships, because there had recently been a turn in the bureaucratic understanding of these kinds of supports in Sweden, where if you lived in any kind of formalised relationship, like if you had a partner that you live together with, or you were married, or you have kids, it would be considered, then this other person’s responsibility to take on some of your care needs, for example. So there’s really been a switch in, in how these kinds of supports have been understood in Sweden. And that really, of course, impacts the the feasibility of of coming into a relationship or even…so I was really interested in how these changes had evolved during the welfare state. 

And we also have this have this really clear shift in the welfare state in Sweden in the 1990s, where the independent living movement is successful in, in lobbying for this law for personal assistance and other types of care, which is based on on self-determination, and community inclusion, and so forth. And the law is, is still there, but it’s been altered significantly through these kinds of bureaucratic and legal processes. So the actual meaning of the law now is something completely different than what it was in the 90s. And I was interested to see, especially since the concept of family is so ingrained, especially in the Swedish welfare state, the notion of… and these kinds of support systems that we have that protect women in the workforce, and protect the nuclear family and so forth, but these are not connected then it seems to these disability support. So that was my sort of prior interest.

 And then yeah, I would say that it’s been hard to…I came from a very I would say, sort of intersectional and well-structured academic environment in Stockholm, and where I did my gender studies, bachelor’s and master’s and came to this ethnographic institution in Umeå because they had this disability research programme that I applied to, and they’d never heard of any of these types of theories. And so I feel it’s been harder for me to do this where I got the opportunity to then have, done it perhaps in a gender studies institution in Stockholm, so…so I think it’s been the sort of practical issues of accessibility and… but also very much a sort of epistemological or methodological work to in order to insert these kinds of…ways of thinking. 

Yeah, and I think something that I write about a lot in the thesis and speak about a lot when I speak about my research and my thesis is this…because I use these kinds of services that I research myself, so I knew that it would mean that if I took on this position, and I moved, I would have to redo the reassessment service thing here, and I just come out of a gruesome patch my last couple of years in Stockholm that ended up in a court case for me with…due to these also bureaucratic and political changes within how the law is interpreted. 

So I was one of many who this happened to, and I was absolutely terrified moving, because I knew that it could be one or the other. And then I enter into an academic environment when no one knows anything about this. So I think in Sweden, we still have this understanding that the welfare state is functional, and you are given what you need. And if you don’t have close friends or family members or so with disabilities, you don’t have insight into the bureaucratic system. So I was very, very afraid, very haunted, in the beginning of my thesis work, which, whether this was just an absolute stupid thing to do to leave community and social connections that I had in Stockholm and begin sort of solitarily in Umeå. And then I had a because most of my work, and the thesis I also thought would circle around this reassessment, that if you have,  there’s a state level for support in Sweden, and then a municipality level that’s divided by your needs. And I’ve always been in the municipality level, which means that my reassessments have been yearly, when I’ve been growing up, and in my adult life. 

So I first saw this as a kind of forced chronology for the thesis as well, that it would cycle around these reassessment periods. And then I moved here, and I had a meeting with a social worker who said “Oh, well, you’re gonna be here for four years now and do your PhD. So we’ll just gonna let you do that. And then we’ll get back to you in 2020”. And that was absolutely alien that was the…and I think that messed me up more than then I would have known because then I also realised that, hey, these bureaucratic systems that have I’ve been subjected to all my life – that’s also conditioned my personal life in a certain timeline, or understanding of time – it’s not it’s not a natural law thing, it’s not something that is pre-decided having to be this way, so it could have been different. And what would my experiences have been then? And what are the experience of, of other disabled people so? And then…so I think that that shook me to the court in different sense, because you will see that all these terrible experiences that I had, before moving to Umeå maybe wouldn’t have been that way, if I stayed here or if I’ve been there all the time, it would have been very different. 

So I took also, I think into my work a very sort of cynical but also a very clear understanding of what social position – perhaps class – I mean, the University is one of the most profiled workplaces in the city. So what would happen if a disabled researcher couldn’t do her research on disabilities if the municipality didn’t grant her….so I had this notion as well a distinction between the how I was received and the support I was, was given based on things that had necessarily very little to do with my life, with my actual needs, but much to do with my social position, which is harrowing, so I think there’s also this…I was very happy personally, a lot of people are very happy for me, but I think this is also a symptom of, of something that’s much greater and much more sinister in these types of huge structures that are supposed to be objective in that sense.  

Jet Moon 

Yeah. I know the terror and I mean, yeah, you know, there’s like thing where there are your original needs existing with disability and then there becomes like another layer of needs that’s to do with the the trauma that you open in trying to access the support for the need.  Yeah, complete. I mean, it’s, it is a mental chaos. I think it makes sense to go to the next question. 

So it’s often I see your writing, you know, like, most often, I think I would see your writing in the form of posts on social media. And it’s where I hear what’s going on for you and your life and I see post about dealing with the violent bureaucracy and the state’s distribution of basic living support. and I see a lot of commonalities between what you describe and my own and other disabled people’s experience in the UK. And I also see that realm of social media as a place where people share their experiences, and can see those common threads and support each other. For me, the internet’s been a lifesaving, and source of peer created information and affirmation. Could you say something about that place of apparently casual public (writing)? 

Christine Bylund  

Sure, I think it’s really… I also have that experience of being really affirmed in my identities and my living conditions, especially I think, as a queer disabled person, that most of the knowledge about critical ways of thinking around disability are so…come from these sort of queer disabled separatist spaces, mainly on Facebook that I accessed when I was maybe 10 years younger than I am now. 

So yeah, and I think it’s also…I’ve used Facebook a lot as, especially, I think, during the PhD process and writing about these conflicting feelings in research and situations that occurred due to…I don’t know, a lack of understanding of the disabled experience and the disabled position from also other research peers, and so forth. So I turned to Facebook a lot as, as that space of…of people who I know, share experiences with me. Yeah, and I think as well, it’s been…I’ve not been as a child or as a young adult, involved in any sort of disability specific communities or groups or so growing up, so I think it’s been very important for me to choose the people that I interact with… other disabled people that I interact with, based on common, common understanding of what disability is, or comm-…and also, I think, guided perhaps more by a queer sense of, of self, then then disability, on its own, that I would seek out other queer disabled people. 

So yeah, and I think I really, I use that space as a lot of, of sharing. And I think maybe also sometimes as a kind of space to inform perhaps non-disabled friends or acquaintances that I have, because I think there are these small things that we know as disabled people, small positions, or small experiences in our life that carry deep meaning of what the understanding of disability is in the society that we move around. And so I think a lot of my non-disabled friends or co-workers or relationships naturally have this kind of oblivion to what those experiences would be. So I think it’s also very…it’s interesting to see the reaction because I think I write something that is a bit on the jaded side maybe, I think sometimes my posts on Facebook’s are a bit sort of on the cynical side and it’s very interesting to see the reaction. You can…I can really tell I think whether this is another disabled person, or another queer, disabled person, or someone who’s not in any of these type of circles, or just have this experience depending on how you read it. 

And I think I’ve been very…because I think for many, in many ways, my own life and the experiences that I have can be also read into that kind of super crip narrative of the successful disabled person who, who achieves this and this and so forth. And I think that’s always been my aversion with the Swedish disability rights movement as well, that there really is this divide, I think, where I don’t see as often in the UK, between very high profiled disabled…not necessarily activists but representatives from disabled organisations and so forth who have, who have drastically different living conditions than the majority of the disabled people that they represent. 

And there’s this discourse of how it’s all possible if you put your mind to it, and other types of absolute bullshit that like…this thing, so I also think I, I actively seek to, to step out of that kind of representation, and then how other people speak about me, I can’t control I’m sure they talk about me in, in different senses. But to also show that even if I have achieved all these things that perhaps not even non-disabled people would achieve, my everyday life is very much in fact, impacted by the fact that I live in a society that’s rooted very deeply in an ableist understanding and that this oppression is so all encompassing. So I try also to kind of position myself in a way that shows that it doesn’t, the oppression doesn’t disappear, because I become a researcher. And often it intensifies, if you try and move out of the ascribed social position for you. So I think about it, as well as that, as well, I think like an active an active stance against that kind of narrative. Yeah.

Jet Moon  

I mean, I have found that to be a very powerful place. But I also think it’s, you know, it’s quite complicated, trying to strike that balance between, you know, there’s a level of like self-promotion, personally speaking, but also that thing of like, choosing what I share, worrying about surveillance. And at the same time, sometimes, because so much of my social life is online, I actually forget about certain aspects of this disability until I then try and go out and I’m among people who take lots and lots of things for granted that aren’t very easy for me. It can be quite a dissonance. 

I mean, I felt a bit sick writing this question, because I found the process of writing the material, I’m gonna ask about so traumatic. But could you say something about the official document writing, you know, form-filling this, interrogation by paperwork, that so many of us go through to have state support? I think you’re the first person I ever saw name it, not just the writing, but that whole process as a kind of institutional trauma. And something I find it just incredibly weird and decentring, and the place that I find myself writing from in that situation.

Christine Bylund  

Yeah, absolutely. And I think it’s in, in my thesis, I have these two chapters that were really hard to write. And one was, the first one was about what happens in the meeting room with a case worker. And the second one was about the worry, that is…that flows through this interview material and also the ethnographic material where there are genuine signs, I would say, of post-traumatic stress, people who have absolute physical reactions, and who speak of not daring to collect the mail on certain days, because they don’t dare to. And these kinds of things that are absolutely horrifying. But then because I had this experience for a while now that I don’t dare to open my email. And I felt so neurotic and it was just like, “Ah, there’s something wrong with me”. And then I had a friend who was not a disabled person – I don’t think at least that they are we haven’t discussed it – but from a queer kink circle who said “But don’t you think that’s different if you’ve had real threats posed to you as a person who have been coming in these form- these formal letters or emails? Don’t you think it’s…shouldn’t it be normal that you don’t dare to? Isn’t that a normal reaction then that you don’t dare to open certain types of communication if that’s happened to you once?”. 

And I feel like that’s interesting because a lot of getting by in this type of bureaucratic situation is also to compartmentalise that experience and be like “Oh, that happened then and then I move on with my adult life”. And then these kinds of triggers reoccur, and I had a hard time naming what they were, and I thought that was really interesting to have that seen and mirrored in that sense by another person.

Because I have this….I have this experience that I write about in my thesis as well, that was, when I did this thing in Stockholm, where they…I had to go through a process that is very common in the Swedish bureaucratic system now, and sadly, but that was sort of being newly introduced, there was this in-person observation of everyday basic needs, such as personal hygiene, and such that I did with a vocational therapist. And that fucked me up for life, I feel like that’s a lot of things in my relationship life and in, in, in myself personally, that were really harrowed by those things and it also…because it was such a threat, I feel these things…because there’s always been this description, of course of your basic needs and, and other needs that you have. But if that is as a discussion, or if that is in written form, that’s harrowing in itself, but it’s never been these kinds of physical observations before for me, and then I had a friend who went through that as well, and it was terrible for them, we talked about that. And then, we also talked about this threat, where there’s this, like, “Oh, you can choose not to do it”, but then we don’t have the, the paperwork to give to the municipality board who will decide on this. So what is the choice? Genuinely in this there is no choice, of course. 

And then that happened to me and a couple of years later, when I moved to Umeå I was invited as part of a group who was going to work on disability policy for Transient village Europe, in Berlin. So we went there and then we had…we talked about intersectionality’s, between trans people’s experiences and disabled people experience but also particularly disabled trans people’s experiences, from different perspectives. And there was really a sense of, of being in a peer environment and this kind of safety and community. So, on the last couple of days, we were asked to describe, if we felt comfortable, to describe experiences, where we thought we had been violated- our human rights had been violated as disabled or, or trans people. And I spoke about this experience. 

And it was so….I write about it in my thesis, because it was so interesting how that had become a thing that I had to do, and then it’s sorted out and then I had my…because I did that as well, I had a very solid…because I think when the municipality put me up with this vocational therapist to do this, to begin with, they… I thought always that they thought they were going to find some kind of loophole in my description, or they were gonna, you know, it’s really that kind of…and then this vocational therapist wrote a brilliant piece on my access needs that really sort of took me through the legal process and then granted me this permit to Umeå I’m very certain that was the case. So I’d made this…the thought process in my mind was like “Oh, that was terrible. But then I did. And then I was granted these types of services”. So there’s this very unsettling understanding of what sort of saved me again, back into the bureaucratic definition of who’s eligible for these services. 

But then I explained this in Berlin, and these people looked at me and they were horrified. And they said, “You can’t…it can’t be true that this is happening in Sweden, why is no one like where’s the Human Rights Watch?” And it was, and then, as well as being given this, this very different decision in Umeå, that kind of experience was also something that I think was fundamentally rattling for me because it also took an external observer for me to realise that “Okay, this was a terrible experience, but it also was legally or in a human rights sense absolutely violating” because I think it’s become…when you’re under that kind of pressure, which I think any of these assessment situations are where you describe your needs and then have them deemed true or false by these kinds of bureaucratic…it is such an existential pressure and such a threat to your, your…yeah, the entire existential process of being alive is helping these, these processes. So I think, once it’s fine,..there’s a certain part – if it’s fine – there’s a certain part of, of integrating that into the experience and in order to be able to carry on living your life, having gone through this, there needs to be a certain amount of compartmentalization and so forth. 

So I thought…it was very shocking for me how, in the beginning, when these things were happening was very debated in the Swedish disability rights movement. And we, I think it was really an effort made to show the absolute obscenity of these kinds of measures. But then as it becomes solidified in a bureaucratic structure, it’s very hard to, to get at it, then. Because if you don’t accept these premises, you won’t be granted support. So there is, I think, in that sense, the bureaucratic structure and that’s the case, in a lot of disabled people’s experiences Sweden, that if you…there is an appeal system, of course, where you can appeal decisions, and then, but then if you’ve appealed all your decisions, and you still…you’re still not granted the support, then that is the full stop on that kind of road. So what do you do from there? 

So it’s very, and I think that is a lack of, or there’s one disability theorist in the UK called Bill Hughes, who talks about disability as the theft of agency, which I think is really brilliant. And I think in these kinds of positions, or processes, there is a fundamental theft of agency or a fundamental subordination that you need to do in order to be given everyday support for living a reasonable life. And in Sweden, nowadays, we’re not talking about whether I can do extraordinary things, but talking about whether I can get dressed and be fed and leave my house, and then the discussion becomes about that. So then everything that is around that also becomes something or outside of that becomes something extraordinary. So if I can maintain a job, then that’s even more extraordinary than it used to be because the debate and the fight now for these kinds of welfare state supports are around these absolute basic needs, such as personal hygiene. And so it really shifts the understanding of what disabled people’s lives could be and should be as well. Yeah.

Jet Moon  

Yeah. And how much smaller life gets without your support. I mean, I also was thinking about, you know, what the difference is between so….the capability to write something very academic and insightful, and then the feeling of writing from this place of terror (and) an assumption that you are lying, that you’ll be… just a loophole be discovered or something, you know, some counter argument would be made against what you say. And that it also is something where you are looking for this very, very basic support. 

Christine Bylund  

No, and I think there’s absolutely something to be said about…I theorises this in my thesis using Frantz Fanon, the black French philosopher, and he talks about combat breathing as a state of being in siege, and on the subject, being in a constant siege, then from, from his perspective, from colonialization, or racist violence. But I find it very applicable in, in, in disability terms as well or through ableism as a structure, that there is this of course, fear of, of…there’s this terror that is also wordless or traumatic, in a sense that there there are no words to describe it. And that’s very common in my material where I interview people about these assessment and they say, “Oh, it’s terrible”, and then they don’t want to talk about it.

And as an ethnographer, that’s also something that we are taught to kind of see as a deficiency then in the material, that there’s nothing to…if they don’t want to talk about it, there’s nothing there to analyse. And I think I had to do some work in order to show that as a result itself, so if it’s an event is traumatic enough, it nulls your possibilities to be vocal or to express and that’s the nature….the nature of trauma is that kind of of shattering experience. And I think it’s interesting in the research sense, but also in terms of, of existentially to see what happens then with a person’s sense of self and sense of time if this is prolonged, because I think this is really the case for disabled people that there might be traumatic events that happen in certain surroundings but this notion of terror is all encompassing and this notion of one day, they…. I will get a phone call from the agency or I’ll found out in some way, yeah.

Jet Moon  

So I want to come back to what you’ve spoken about this, these collecting stories. So you’ve drawn together your own and other people’s experiences, chorus style, in the Archive of Pink Noises, and it’s titled Collateral Sounds. And it’s described as a “collection of voices, sounds, stories from Swedes with norm-breaking functionality, that has isolated itself during the global COVID 19 pandemic, the word is based on a single space enclosed between four walls. Within this frame, a web of sound unfolds, a DIY collage that makes use of what is available indoors when the outdoors is not an option. Daily routines, aids, pill maps, coffee machines, and the time that passes and a constant movement between an individual story and the collective experience”. So I’m like, sort of part A and part B. But do you want to say, making the work fi and how it feels to experience that work in full effect?

Christine Bylund  

Yeah, I can talk about making the work. It’s, I think it’s so interesting with with these pandemic time, this notion of three years, that’s been cut out of time, and then the possibility to return for some disabled people into this normative and then yeah, we…and I think what’s especially…what was especially interesting in the Swedish case was this absolute opposite way of making decisions about safety measures and so forth, that was really, that differed from even the Nordic countries, but also differed vastly from a global understanding of what this was. So that meant that for a lot of disabled people in Sweden, shielding was the only possibility. So a sort of involuntary isolation then, which I did, mostly, myself as well. 

And then I was asked to do this piece, and I thought a lot about it because it puts it ties together this, these official statements from the Swedish government that say that we would, “We need to accept many more deaths, because this is an uncontrollable thing that we can’t, we can’t take measures to control this. And we need to brace ourselves for a couple of 1000 deaths”. That’s the Swedish Prime Minister said that in a press conference and it’s awful, it’s awful. And these understandings of like, “Oh, but you see, it’s only the frail and vulnerable who are, so let’s…” and this is so telling of what the Swedish the Swedish states disability politics has been, if it’s not counteracted by anything, if it’s sort of full bloomed. It’s very eugenical. So and it really was during the pandemic. 

And then, of course, there’s a counter story to that. That is these people with disabilities who, who isolated if, if possible, I mean, a lot of, of the sort of people who couldn’t do that move needed to carry out jobs or do other things, but also this growing number of people in Sweden now with post-COVID symptoms, who is also in large, to a large extent are a forgotten group now that the pandemic is over, we don’t talk about them either. So I think for me, it was very… I wanted to make a piece that would show these types of…show in isolation in that sense. So it was also as I’ve written about, it utilises sounds that are very sort of mundane. 

And in Sweden, we were very obsessed with hand washing, even though globally, you understood that it was air transmitted. We have yet to understand that in Sweden, so no one…it was very important to wash your hands but you didn’t need to use a face masks. So there’s these lots of hand washing in the….sounds of hand washing in the in the work and then also discussion about…very interesting and harrowing, this connection between a largely racialised black or Asian minority, and the disabled community, whether the… there were lots of discussion about how the…in which demographic circles the virus spread, which was often the spread in modern life, the immigrant demographics, because people live in crowded spaces, and they have work that they need to do, they are bus drivers or cleaners or so forth. But then there was a discussion about how migrants and especially people of African origin or descent in Sweden ‘didn’t know how to wash their hands.’ 

I tried to utilise that in the work as well, this notion of like, “Okay, but the people who care for me in my care home maybe if I’m elderly, or in my work as personal assistants, or working as nurses and so forth in healthcare system are often from these marginalised groups. So you just push us together and tell us that we can need to fend for each other and also perceive each other as a threat, then. So, what if this person who works in my care home doesn’t know how to wash their hands? So there’s someone else bringing in the threat to my home”. And it’s not….it’s never the state. The lack of pandemic safety measures was never a question. The question was personal. So if this person doesn’t know how to wash their hands, then they are personally to blame for spreading the virus, even though that wasn’t true. So there was lots of discourses that went around like that. 

Jet Moon  

I mean, it’s also this very basic idea that’s, you know, used in prejudices is that ‘the other’ is like, somehow dirty.

Christine Bylund  

Sure. Yeah, yeah. And this notion of how was mostly…there’s a huge Somali demographic in Sweden, especially in urban areas, which is often a very marginalised part of society, sort of economically, socially, and especially these housing issues that was also why the virus spread and I think it’s, it’s ludicrous to try…because it also tells us what the state knows about this other that they’re trying to convey. Where…because it’s mostly a Muslim population and it’s incredible to tell people that Muslims don’t know how to wash their, their hands, because they wash their hands all the time.

Jet Moon  

I would just want to come back to the work, this Collateral Sounds and I was very curious about what the work feels like within the small walls.

Christine Bylund  

Yeah, it’s been a while since I’ve listened to it now, I wanted it to be…I think I wanted a very much to be closely tied to this notion of isolation and threat. And also try and….because I also utilise umm some Swedish folk music or oral traditions which talk about longing or, or boredom or I wanted it to be a work that was very closely tied to the experience of what it felt to isolate and genuinely this notion of, of fear to some extent and threats, but also just yeah, boredom or was a bordering on this kind of like that I find the word in English, of just this sort of giving up on ever being part of the surrounding society. Again, this kind of resignation is what I was looking for. 

Because when I think about it, now when I don’t need to isolate as much I really see that that was, that wasn’t very good for me. And it really had some fundamental impact on other types of relationships in my life with people who were non-disabled and who…So there’s really that kind of, of…I think, for a lot of disabled people in Sweden and also maybe what I wanted to show in the work is also that there was this absolute experience of being understood as a….as a group or being objectified in that sense as being someone that wasn’t…that is easy just to remove from society in that sense. And then you’re absolutely not included in any of these measures or, or in people’s consciousness that you people would make, even people that you thought of as close or loved ones would make decisions that would be dangerous for you in like personal life. 

So I think it was really…and I was part of a support group for isolating disabled people as well, where we really talked about that experience that I also thought would be…And I think, yeah, that’s something I remembered now that I also wanted to portray in the work, because there was…there was this notion of, of isolation, in general, that we were only supposed to socialise in small groups and whatnot. And I think the…what was really interesting, is also the outrage of non-disabled people coming from the fact that the state can decide what you can do and when you can do it, and when you’re going to leave your home and not and that the state has that kind of power over you in everyday life. And I think that was also interesting, as a disabled person who has that kind of relationship with a state that it’s like a you are, and they were like, “Oh, I can’t be home all the time. I’m gonna go mental. And isn’t this the mental health issue? Isn’t that bigger than the pandemic itself?” 

And it’s, it’s very, a brisk awakening I think for a lot of disabled people as well to see that these kinds of living conditions that I’ve had, due to inaccessibility, or due to lack of support is absolutely unthinkable for this non-disabled majority. So it’s the most terrible thing that they can think of it and it’s much worse than then the consequences of the COVID pandemic. So I thought that was also something, yeah.

Jet Moon  

And also the idea that it then ends and it’s finite. Somehow, it was only associated with the pandemic.

Christine Bylund  

I mean, the moment those things…because I think there was really a shift in a lot of online presence and online seminars and so forth. But the moment these regulations were lifted, it was “Bye bye”. And then you were left alone. So I think that’s also an experience that I wanted to share in the, in the work. Yeah.

Jet Moon  

So the second connected thing that I wanted to ask about that work was, um, I’m curious about the difference between writing and voice archives, because you’ve already mentioned oral history, you know, and um… writing and voice have a very close kinship. And I wonder if you had something to say about this?

Christine Bylund  

Yeah, surely. Yeah. I think it’s also…I think of my writing as well as voices or a voice or, in that kind of sense. But I also…I think, was…because what I did for this work was also that I asked other disabled people to send me short clips of sounds that were associated with their everyday life. So it could be, I don’t know, sounds from their aides or sounds from things that they did repeatedly during this…So I worked with a written narrative or spoken voice, as well as this…trying to create this map of sounds from…from different from different aids and I think that’s also…that was maybe a difference between other types of work that I’ve done that’s been….more of perhaps reading an already written text and so this was more sort of experimental for me in that sense. And also what is…what is the voice? Can it kind of sound from a mobility aid, for example, that you use a lot to be a voice? Or what is the sound of….of a TV show that you watch all the time? It’s an isolation or your coffee machine or these kinds of things. Yeah.

Jet Moon  

So recently, I listened to a recording of Jericho being read. And I previously only read that as a written text. So it was, you know, very interesting to hear it spoken. So the full title of the work as I know it is “Jericho on sexuality and liberation and ableism”. And in that you use the expression “Having my boundaries blurred and smeared” and talk about the way that yourself and those that you call your ‘godmothers’ defend yourselves from an ableist gaze through a certain performance of this fierce femme crip life, that’s how I understood it anyway, and that meeting that ableist gaze directly. And then later on in the piece, you describe an altogether different experience of boundaries via an exploration of sexual desire, this tumbling walls of Jericho in the south, a metaphor for letting go and sexual submission possible only through deep safety and now that you’re fully seen. Now, that article, I mean, it had a huge impact on me, because I so seldom see those experiences of the hidden – and yet our very visible to ourselves realities  – so clearly. And also, you know, you referenced that, in that article. Mia Mingus’ article “Forced Intimacy: An Ablest Norm”. Can you speak about writing such intimate work, how the conditions of survivorship might inform that decision? How you distinguish making that choice from any potentially spectacular, you know, gaze?

Christine Bylund  

Yeah, it’s a brilliant question. I wrote the piece originally for a partner of mine who asked about my experiences…my very few but profound experiences as a submissive, we have a D/S relationship where I am the dominant part, but…and then I thought, “Oh, there’s something here that I can do” as I’ve never spoken to anyone about this experience apart from speaking to with her, which I think also is interesting because it ties into normative notions of what people that identify as Doms or tops can do…this notion of authenticity, and what is…yeah, so I wrote it for her. 

And then I…. I saw then that it had these connections, to…because I think especially as a physically disabled person, and someone who grew up as a disabled girl, I think there’s a lot to be said about this notion of being cared for by others and being understood as frail and vulnerable and notions of…of dominance in that which I don’t see as sort of compensating in any way. But I think a lot of my experience I had as a child are rooted into seeking ways of asserting agency and so forth in other areas in my life. And I really recognised that when these women that I talked about as my godmothers, because I think there was a specific type of very well dressed or very sort of, not necessarily a style, but an intent, what I also recognise in femme expressions in general, this very attentive use of, of clothes or, or hairstyles or makeup, and combined with a sudden, overbearing way of being socially perhaps, that I find very much is sort of…this way of being sort of readily armoured to enter into ablest society that has these kinds of understandings about your capability and ways of being. 

So, I..we also talked about it sometimes this, what that…because I think I write about that in the beginning of the text, what kind of, of possible ways of being as a girl or as a woman that are cut off from you, by being…by having to present this…this way of being a sort of survival instinct and how you can also agree with those kinds of softness or…or vulnerability. And this notion of having an identity that is formed through a reaction to something that’s external to you. So what is then my genuine way of being in that sense or what was there before me entering into the world in this sense and having these experiences? 

Yeah, and I think a lot about…about intimacy and the ways I handle intimacy and in my writing, and especially also in my online presence, where I genuinely feel that maybe I don’t know what is intimate or what isn’t, because a lot of me growing up has been strangers or people who I don’t have personal relationships with being very intimately close to me, in a medical sense or in a support sense in everyday life and so forth, I really feel that these lines, even though they…I don’t feel they are violated, perhaps in my adult life in that sense, through perhaps the care that I receive, and so forth…I think I have a really…due to my, my access needs and care needs…intimacy is something that is a very sort of blurred context to me. 

And where I get surprised where other people have perhaps, yeah, my partner at the time was a great example of someone who has really high physical integrity in that sense, and doesn’t like undressing in public spaces and so forth. And I feel I have no…. yeah, that doesn’t bother me at all. So I go, for example, to this kind of rehab swimming nowadays, and it’s a mixed gender environment. So, I go into the sauna with these old men who have polio, and I sit around the sauna with them. And there was one of my PA’s who said, “But don’t you think it’s weird going into the sauna with these guys like” and I dunno, I put it down to me being very much a lesbian person I don’t…I very seldom think of, of men in a sexual sense like that. But I also think has something to do with this notion of nudity not being a charg-, it’s not a sexually charged thing for me in that sense, because I’m nude with lots of people that I don’t necessarily know or who I brought into my life because of my care needs. And it’s…it has to be something that’s not something that’s violated every time I get undressed, like it had to has to be a space where I can be comfortable with them being with me when I’m nude, but there are other things that are more intimate for me, especially and I think, very much so….any kind of, of sort of… any way of being that is guided by my sexualities and my dominance, for example, is very intimate. And I don’t like joking about it. And I don’t like showing it to people in a sort of voyeuristic sense. So that’s much more intimate for me, then, then nudity in a sexual sense. 

So I think that was also something I wanted to explore in the….in the text. So what is intimacy? And how do I know if I have, if I have an integ-, good if…. if I’m comfortable with being naked, or if it’s just me being naked all the time, so then I have to be comfortable with that. And I think in that sense, it was very contrasting to see that the experience that I had that I write about in the text…also came from this notion of being safe, I can’t play with vulnerability or submission in… with people who I don’t…who I am unsure of whether they…that know what that would be in a disability sense. So I feel like this was a very specific situation where I was sure that this person had this knowledge and we’d spoken a lot about it. And I…yeah, so I can’t, and I think that’s also it’s happened very…it happened in that relationship but it’s never happened since for example, because I’ve not, yeah, please go ahead.

Jet Moon  

I’m just a technical thing. So I’m aware. Somehow, I set the zoom to run till 11:15am. I don’t want that. I’m not sure what happens when you run out of time on these things. She just like ends or, and I want it to like cut you off in the middle of something. So I should maybe stop this and come back in. We’re sure we have enough time. So is that

Christine Bylund  

okay? Yeah,

Jet Moon  

I’m just gonna pause then we’re going to stop the recording.

Part 2:

Jet Moon  

Okay, thanks for that I just…anyway, technical anxiety avoided. So I’m going to come back into the questions: being at the intersection of various forms of marginality as a queer femme crip kinkster, you wear it well. 

Christine Bylund  

Thanks!

Jet Moon  

And you are visible to others and I get a lot from seeing you out there in the world and from reading your words. Has the writing of other survivors and people that you’d identify as such been important to you? Could you say? Who? How? Why?

Christine Bylund  

Absolutely. Yeah, I think it has but in very specific moments. I think often about an acquaintance of mine who I met – that’s nearly 15 years ago, I guess – on the separatist crip and queer disability Facebook groups. Another crip femme identified person who is called Leslie Freeman, who is a dancer and writer from the US. And they wrote a piece in this femme anthology that is, came out, I think then, like 2009 2010, on disabilities, it’s called Essence and Artifice, and I, I really…. I return to that text a lot because it is so it deals with disability and vulnerability and this sort of…the de-gendering and the desexualisation that happens to you when you are viscerally, visibly a disabled person and how femininity, and queer femininity in that sense, can be a refuge and leads to certain tools for re-asserting gender identity and sexuality. So I return to that a lot. 

Otherwise, I don’t know if there are specific people…yourself as well, I think a lot about your writing. And I think there’s also a lot about other crip or queer identified kink people as well, who think I think, have really… because I would say that the, the BDSM community or a queer kink environment has really been absolutely crucial for me in terms of, of finding a space that where I can access these kinds of parts of myself in terms of sexuality and gender identity. 

And then as we all know, in general, the kink and BDSM community is not necessarily an accessible or disability friendly space. So there were lots of…there’s been lots of back and forth in that where I’ve sometimes chosen not to attend events where …which don’t comply with my accessibility needs and so forth. And sometimes I do because I feel it’s crucial for…for other parts of my personality or personal identity, but I think that’s really a debate in terms of also solidarity with other disabled people and the possibility to bring forth accessible spaces, that I have internally sometimes of how much should I engage in these places. And I also think I had a real setback or change in my abilities a couple of years ago where I had this profound physical thing where I…I hurt my back and then due to my like, pre-existing disabilities, it went on for ages and it put me in this absolute horrifying state of chronic pain that I’ve…I’ve been managing since. And I think…when I..when I think about that, I think about okay, but what was it that kind of pulled me through when I realised I wasn’t going to die, but it was….was it that I….because there’s been lots of mourning in that process over…over things that have been related to especially my sexuality and the kink practices that I do, and specific kink practices that I thought were off limits for me that I also thought were sort of central to my way as a sexual being and as a person, as an identity. 

And I think it’s been really…really been important for me then to seek out writing from other types of disabled queer, kinksters, for example, and to talk about…to see recognition in that. And I think in that sense also means that I’ve turned away more and more from the straight disability rights movement in Sweden, and these discussions of respectability, and all the things that I think…because I think for me it was  also it showed me what was integral to my being and my sense of self in the world and that wasn’t necessarily even academic things that I was doing, or the disability movements in general, but I’m very…driven by the siren and in that sense, and driven by…by having the possibility to, and eventually I got, got better. And then I went on to working in Stockholm in the Roman Dramatic theatre, and had I was going to do this rehab workout programme that I designed for myself, that was purely aimed at being able to put someone across my my lap to beat them…that was, and I think that’s, that’s the only, I did a lot of exercises as a kid in rehab facilities and… but this is, that was, the only thing that could motivate me to do it for myself, was if it was connected to something that’s very integral to me as a sexual being or as a…as a dominant person. So and that’s really helped me vastly with general, physical improvement. But for me, it’s been really interesting to see, okay, if I…if there’s something that I need to pick that I can’t be without, that I would like to be able to do again, it’s these kinds of practices. It’s not academic writing, or academic speaking or teaching. So it’s been really an interesting experience to see…to also find out what is the sort of core of me and what is also something that is…that guides me when I do other types of work. So I think in that sense, it’s been very integral to see these types of experiences. Yeah.

Jet Moon 

So I feel that many people can – or they will, at some point –  connect with survivorship, whether that’s from a serious illness, disability or being part of some survivor group: could you say something about survivorship as a category of being and I am completely fine with a negative response to that as much as I would be to a positive one.

Christine Bylund  

Yeah, I think that can tie in to a lot of what we were talking about in the beginning, this refusal of survivorship almost from the Swedish disability rights movement, which I’m very perplexed by. Because I also, especially in this text by Leslie Freeman that I referenced earlier, as well, she talks a lot about this murky, murky water between sexual experiences that she had as a younger disabled person and yeah, types of abuse or boundaries being transgressed and so forth, and survivorship in that, and how it’s linked to a general experience of being a visible disabled person being…I don’t know, a name called in the street, or looked at funny or things like that. And I think for me, that’s been so integral. 

What’s been so freeing about coming into the UK or US experience of disability is this notion of survivorship that we exist within an oppressive system that violates us. And maybe it’s about a collective memory as well, in Sweden where that was the case for disabled people maybe in the 50s 60s and onwards, but from the mid 1990s hasn’t been the case and then it’s recurring now. So maybe we don’t have the vocabulary or the experiences now as a community or as a culture to describe what’s…what’s happened to us. Because I think it’s been really…when I’ve tried to have those kinds of discussions even with friends who are part of the disability rights movement is been a very…yeah, it becomes…they’re very assertive about that not being language that is used about them or that is used as a… the group as a whole and it ties in, I think with this…for them this medicalisation and this understanding of being meek, and weak.  And I feel like well there must be…there must be expressions that we can utilise to tell others that “I had terrible things happen to me and they were none of my making” like, it doesn’t matter if I’m very resistant and do certain things and I’m very intellectually, I don’t know….able to do stuff, if I’m met with this wall of oppression that the welfare state is in Sweden right now. It doesn’t matter who I am, personally, or what I try and do. 

Jet Moon 

Yeah, I mean, in the beginning of the interview, you spoke about this thing where people don’t want to be getting into like a narrative of victimhood. And I understand that, but I think that they’re…that is one thing, and to identify as having been a victim of something, it’s not the same thing.

Christine Bylund  

No, no, and I think this is so…it’s baffling for me that these…that that distinction is not clear, or that I can’t make it clear to these people, because it’s also…because I think one thing that is also connected to survivorship for me and maybe as a researcher as well, is this notion of like, “Would I be happier, more content person if I didn’t know all these things very intricately, if I didn’t know how the welfare state distributes safety and unsafety and if I didn’t have words for all these kinds of, of cultural messages that come at me as a disabled person?” 

And then I think…when I think about that, I also think that if I didn’t know what this was, it would just affect me and I wouldn’t have words like it would just be this state of…of wading through these undescribable or unknowledgeable experiences that would just happen to me and that would, I think, feed into this notion of internalisation that, then it’s me, then if all these things keep happening to me, then it’s me, and it’s not the…and I think that that’s what’s so freeing for me about this politicised or oppression driven understanding of what disability is and also freeing about the survivorship identity in that sense. I wouldn’t say that I use…I don’t use it often to describe myself, I think in general, but when…when you asked me about how I feel, it ties into my, my being and the work that I do. 

I can pick out certain experiences that have been very well informed by…by being a victim of certain aspects happening to me. So I think there is perhaps a mix as well between this notion of the narrative of victimhood, and this being a victim of a crime, for example, that happens in the disability rights movement in Sweden. Which also when I compare it to the UK, or when I compare…there is something freeing in the UK understanding for marginalised groups about the state as well, about…and something freeing about the…the political discussions in the UK. When I think about how Conservatives perhaps speak about marginalised groups in the UK, it’s very clear what they want. And I think that’s also good. Like, because in Sweden, it’s very…and I think the disability rights movement has been very much of a reform-based movement where we have meetings with politicians, and we make them see sense and so forth. And that’s fine if there is a political will to make change. But if the political will is not there anymore, we go to these meetings, and they listen, and then we go away, and nothing happens, then we need different types of, of tools. And I think that’s freeing in…from my comparison in the UK sense that at least people…at least it’s outspoken that various marginalised groups are not…that certain politicians don’t have any sense that, that there is a society that should care for these marginalised groups. And I think that creates a terrible sort of environment to live in, but it’s also created a clear opponent in that sense. 

Jet Moon  

Yeah, I mean, as I’ve been listening to you speak, I’ve been thinking about, you know, like one of the bases within the disability rights movement to say, you know, like, ‘disabled people have a place, disabled people have value as themselves,’ you know, like this thing, and how, I wonder If sometimes in people’s thinking – not in the actual reality – whether that clashes against acknowledging the survivorship?

Christine Bylund  

Sure.

Jet Moon

You know, because somehow you have to be all singing, all dancing, you know, everything’s okay, like, ‘life is great,’ somehow, you know, which is… it’s a, it’s a kind of strange disjointedness. Y’know, somehow, we have to be like ‘perfectly disabled.’

Christine Bylund  

Now, I think there’s something to be said about this identity of the victim or the survivor and this respectability discourse that is also very much tied into the disability rights movement in Sweden, where it  “oh, I just want…Firstly, I’m capable to do anything that a non-disabled person is so just…and the fact that I don’t get a job is….” So there’s this notion of, of, “look at me, I’m just like, you” kind of thing. And “my rights should be given on these kinds of similarities that I have with the non-disabled group”. And that, of course, throws a lot of disabled people under the bus, who can’t say that. So there’s lots of things that are radically different from a disabled person’s experience from a non-disabled person experience, given their abilities. 

But it also, I think, that’s that….that we…you associate the victim position or the survivor position with weakness. And I think it’s also detrimental to the discussion about these kinds of (issues)…because, of course, I feel when we spoke about the assessment process or the bureaucratic violence, that I didn’t go into the depth of that because you had other questions as well, but also because it’s really messed me up in ways that I think that only now these last couple of…this year, perhaps, I went into some, some therapy that…yeah, the beginning of this year, the end of last year, and came out of that in, in spring this year, and it has really altered the way that I function in everyday…emotionally in everyday life.

 And it’s the first time, even though these things happened in 2015, that I’ve had the time and the ability to focus solely on that, and how that was intertwined as well with other things that happened in my personal and, and my relationship life that was, I think tainted by these experiences. And of course, when I paid up 700 pounds to go into therapy, I, of course, I thought that I shouldn’t be paying for this, you know, why should I pay for damage that someone else has done to me, but that’s the only way to get along with your life. And I think I have a few acquaintances or friends in the disability rights movement who talk about accessing therapy for their experiences as disabled people, and they talk about that in very hushed voices. And they’re like “oh, yeah, but then I have this therapy currently that I do, but don’t tell any…” like, because that is also then this acknowledge of “I’ve been hurt by this system and it’s forced me to take up these messages”, yeah….

Jet Moon 

I mean, there’s a question that I’ve asked from other people that I’ve interviewed, but talking about, what’s the common perception of what survivorship is, you know, and it’s like this kind of like “Oh, it’s a certain kind of experience, but it’s also people are like victims, and it’s very sad, you know” like this kind of thing. And then, actually, what the experience of survivorship can be – or often is – for people and then it’s not just also like one thing or the other. 

Christine Bylund  

No, no, and it’s very mixed together. Yeah. Sorry, if I interrupted you. Yeah,

Jet Moon

I suppose I just…I’m aware of just time and also, I’m getting a bit exhausted unfortunately, that is just how it is. I would like to ask you to say something to survivors who wish to write like any words of encouragement or just to say why you feel that writing in private or in public is important?

Christine Bylund  

Yeah, I think I would say that if you if you feel you want to do it, just do it. And perhaps to not think about composition of work or, or structure or whether this is good or bad writing. I feel like a lot of writing that I do privately but also what then turns into perhaps public writing at some point has a very sort of flushing kind of nature for me where I I…writing as a way to, to express feelings but also to…this motion that that happens when….I don’t know how to describe it….in Swedish, I describe it as this sort of bursting open that if there’s a feeling that I can’t hold, or that I might not necessarily know what it is, but something – it can be positive or negative – but, but that writing is a way to, to open that kind of place in myself. And I think also…writing has different qualities to me than speaking verbally to someone else, so it’s more….Yeah, with use of imagery, or I could write whatever I think because I don’t have to…I don’t have to express it to a person, I don’t have to show it to someone. So, I think it’s been very helpful for me in that sense, but also, what we talked about in the beginning, maybe this notion of if it…experiences is more traumatic than we can handle at the moment, language is also broken. And to also think about that…that writing for yourself can be in this broken manner, it doesn’t have to be clear and concise. It can be whatever, you know, and I think that’s also really important.

Jet Moon 

I like the idea of…yeah, writing in the broken, broken language. Finally: is there any part of your work that you’d like to mention or promote anything that is going on at the moment that I haven’t asked about?

Christine Bylund  

No, I don’t think so. I’m mostly doing research these days. So yeah, there’s nothing that I think that’s in the pipeline. No. 

Jet Moon  

It’s great to hear you. 

Christine Bylund  

Great to hear you. Thank you for taking the extra time. Feel like, we could also have stopped earlier if you needed that.

Jet Moon  

Okay, I’m just going to turn off the recording.