a thoughtful magazine by sick & disabled people
about
shop
stockists
submit
press
excerpts
finances/support us
fairs & events
reading list
archive
contact
FORMING KINSHIPS THROUGH RESISTING CURE BY AMY ETHERINGTON & KAIYA WAEREA
Published in SICK issue 5, 2023
amy etherington is a designer, researcher, educator, and writer working as lecturer in Design Theory and Practice at UAL. She has recently published a
pamphlet with Sticky Fingers Publishing titled I love you forever is murder, which
is part break-up text and part grief-oriented trans theory. amy has also guest
edited FDBNMourning, the latest of Sticky Finger’s FDBN series. @amy.ether
Kaiya Waerea is a chronically ill writer, designer, and publisher from Aotearoa, now living in London. Her writing has been featured or is forthcoming in Errant Journal, Counter Signals 5, AIGA Eye on Design and others. Kaiya co- runs feminist press Sticky Fingers Publishing and teaches on the Graphic Design programme at Camberwell University of the Arts London. @kaiyawaerea
The two of us met while working together at an arts university, and in this context quickly developed a solidarity across the experiences of marginalisation we faced there. As our friendship emerged we became increasingly interested in the entanglement of these experiences, and what bringing together our perspectives might reveal. Through our initial conversations, we found that we often encounter systems that want to correct us—to cure us—and that many of the people in our life also expressed this desire through their ‘love’.
We sat down to talk through these experiences together and developed this conversation into the writing here. Marginalised experiences are often held within distinct categories understood individually in relation to a medicalised norm. Through our conversation, and through bringing together our perspectives of transness and cripness, we hope to muddy these binary distinctions and find new opportunities for resisting the logics that attempt to cure us.
AE: On the gov.uk website there is a list of requirements for applying for a Gender Recognition Certificate, one of which is that you must have been living in your affirmed gender for two years. This duration is understood as proof of commitment to your transness, and along with a medical diagnosis from a doctor and clinical psychologist makes up ‘enough evidence’ to formalise a transition. This idea of proof, or evidence, I find really interesting—how it imagines there to be a proper transness, and an improper and therefore not real transness.
An ability to provide evidence of a proven transness also depends on one’s ability to navigate these administrative systems successfully. I am still struggling with this process, which feels like an endless series of tasks designed specifically to frustrate a neurodivergent mind. It leaves me—as I write this—with an inconsistent identity that itself then generates further difficulty in navigating a world already displeased that I exist at all. This is, of course, intended. Layers of challenge and administrative tasks required by the state and other institutions exist to prevent what they would imagine as a ‘real’ transness from ever existing. The requirement of proof sets up the conditions for medicalised transness—gender dysphoria as suffering to be alleviated—as the ‘legitimate’ transness, and therefore as the transness that requires, and is deserving of, a medicalised cure and institutionalised care.
KW: In Western medical contexts, we have come to generally understand the desire for cure as the same as wanting to alleviate suffering. Often, these ideas are actually quite uncoupled from one another. This is revealed in the contexts of chronic illness, neurodivergence, and transness, where the desire for us to be cured leads to attempts to correct our mental and physical processes by realigning them with what is considered normal. An example of this is that while I can access state support for my travel to and from work, I can’t access state support that would allow me to work less, even though that would be far more beneficial to my quality of life, and would probably cost the Department for Work and Pensions less. This is because, to the state, not working or working less is unacceptable. The state doesn’t want me to be well, or live meaningfully—it is only interested in curative measures that can get me to work. I find this echoed on a person-to-person scale too; it's always “Have you tried x y or z” instead of “Can I come over and make you dinner, clean your house?”
AE: So then what does an alleviation of suffering mean in relation to resisting the idea of cure? For me, it would begin with questioning and unsettling the often-assumed experiences of suffering that we are speaking to. As an example, thinking about transness through dysphoria and the actions that are carried out to alleviate that dysphoria is not particularly useful. As a languaging of trans experience, this validates the state’s/doctor’s/society's request for proof and contributes to narratives of real and not-real transnesses. Instead, I like to think of transness as a play of, and with, sex. Play is often unconcerned with destinations, and more specifically is unconcerned with proof and questions of what is ‘real’ or proper. Rather than thinking of trans suffering as related to dysphoria, might we think of it as resulting from a policing of what play is allowed, and what play is disallowed? This bordering of transness is carried out in part by medical institutions, who will only prescribe hormones if you wear the frilliest of dresses to your appointment, and tell them about how you played with your sister’s dolls as a child.
KW: The superficial nature of these borders of what is permissible revealed themselves during the lockdowns, when all of a sudden adjustments which disabled people had been told all their lives were impossible were made available overnight for non-disabled people, and then similarly removed overnight when non-disabled people got bored of the whole situation. Of course, disabled people have known all along that, more often than not, it is these borders that produce barriers to our participation in the world, as opposed to our deviation from medical norms. I often try to imagine what my experience of chronic illness would look like if I could truly receive the kind of care I need and want. It is hard to visualise.
We often think about how medicalisation is present in our everyday lives in relation to the state, the NHS, our workplace, and so on. However, I think that a really pervasive way it operates is through our individual relationships, and how we collectively imagine what it looks like to express our care and love for someone. So often, particularly from friends and family, love is expressed through a desire for us to be cured. “Surely this isn’t going to last forever,” my nan says over the phone, eight years after my diagnosis. “Yes, I know it’s chronic, but surely not for you?” This is love as a punitive logic, love that imagines that you in particular don't deserve this, and therefore others do. Amy, in your pamphlet I love you forever is murder, you explore the idea that when someone comes out as trans, those who claim to love them often respond with an expression of grief. I think this is deeply related to our loved ones expressing their endless desire for our cure. In both situations, there is a denial of who we are, of something true about us, and that denial is imagined as love even though it is felt as rejection.
AE: Through both of our examples, there is a desire for an exception on the part of the person who claims to love you. It is as though they think that you, as the subject of their love, must therefore be above this tragedy of transness or chronic illness. It feels as though there is a relationship between punitive love and cure logic. People claim to love us, and that love is deployed through the desire for us to be cured and return to a before, when we were seen to be living closer to a medicalised norm. This love-as-cure mirrors the desire of the state for us to return to work.
Being trans often means having an affected relationship with your body, so I wonder what it means to love—or, to want to love—one’s body, and how that love is also in relation to cure? Maybe what's required is a transformation of love, through its separation from the desire to cure. What might that look like? I want to love my body—however naive that sounds. Maybe it is easier to identify punitive love that wishes for a cure within others than it is within ourselves. You have mentioned noticing in yourself a sense of ‘still being me’, suggesting that there is still a pre-disabled ‘cured’ Kaiya in there somewhere, making incursions into the way you understand yourself. How might we resist these incursions?
KW: This is where we find the potential for kinship, you and I, across specificities of marginalisation. Within systems that are oriented towards returning us to medical norms which are measured by a productive engagement, searching for modes of unproductive disengagement allows us to find glimmers of other ways of being. Instead of asking “How can we come up with ways to cope with work more easily?” there is more potential in asking, “How can we dream, together, of work no longer being necessary?”
AE: The playing that is my transness is both a resistance to a return to productive engagement through a cure, and a commitment to my survival—this play is my dreaming. I’m interested in how this dreaming is still in relationship to having to maintain a productive engagement with the world. I work to access material security that provides conditions for my trans-play, both now and into the future. In my particular case, I work for a university that misgenders me, and as a structure contributes to a world that desires me cured. I am situated within the tensions of this relationship, reminding me that it is not one or the other—this play is a play despite the world, in spite of the world, and to spite the world.
KW: That is a great example of how just because you are in an institution doesn’t mean you are of the institution—we can participate (out of necessity) in these systems without them becoming our horizon. While you identify play as resistance, in the context of disability—specifically chronic illness—this resistance to productive engagement is often positioned as rest. I don’t agree with this personally, particularly in the way that this is picked up by institutions as a palatable version of disability justice. Instead, I am more interested in idleness, which to me is quite different from rest. Resting is usually considered something you do to recover energy, to return to a state of productivity. Whereas being idle—you can have loads of energy and be idle, you can not be tired but be idle. Once you start indulging or choosing that as a way to spend your time, glimmers of other ways of living that are detached from cure and informed by desire begin to surface.
AE: Curative logics work its way into everything, including the ways we imagine resistance to them. Perhaps we cannot imagine ourselves beyond them, as we would then be curing ourselves of the desire to cure? So maybe our kinship might be found through the traversal of these tensions together, that you call dreaming and I call play. Kinship in resisting the incursions of cure into love for ourselves and each other, in resisting the desire to cure ourselves from cure itself, in finding ways to play, to be idle, our cripness and our transness as refusals to return to medicalised norms.
Kaiya Waerea is a chronically ill writer, designer, and publisher from Aotearoa, now living in London. Her writing has been featured or is forthcoming in Errant Journal, Counter Signals 5, AIGA Eye on Design and others. Kaiya co- runs feminist press Sticky Fingers Publishing and teaches on the Graphic Design programme at Camberwell University of the Arts London. @kaiyawaerea
• • •
The two of us met while working together at an arts university, and in this context quickly developed a solidarity across the experiences of marginalisation we faced there. As our friendship emerged we became increasingly interested in the entanglement of these experiences, and what bringing together our perspectives might reveal. Through our initial conversations, we found that we often encounter systems that want to correct us—to cure us—and that many of the people in our life also expressed this desire through their ‘love’.
We sat down to talk through these experiences together and developed this conversation into the writing here. Marginalised experiences are often held within distinct categories understood individually in relation to a medicalised norm. Through our conversation, and through bringing together our perspectives of transness and cripness, we hope to muddy these binary distinctions and find new opportunities for resisting the logics that attempt to cure us.
• • •
KW: When I was diagnosed with my first chronic illness, there was a sentence on the NHS website stating that this condition could last “more or less than two years.” I knew that this meant nothing, but it wasn’t until I passed this two-year marker—as arbitrary as it was—that I began reconciling with the idea that I wasn’t going to get better. It was also when I began struggling to visualise what better would even mean—less pain, less discomfort maybe, and yes, I wanted (and want) those things. But I couldn’t help feeling that what those around me meant when they said better was actually a return, a return to moving through and understanding the world as a non-disabled person. This relies on the idea of a stable body being the medical norm, and almost every form of marginalisation relates to this. That body is white, cis, non-disabled, neuro-typical, financially stable, heterosexual, reproductive, and so on. When we talk about cure, we are talking about it in relation to this fictional medicalised norm.AE: On the gov.uk website there is a list of requirements for applying for a Gender Recognition Certificate, one of which is that you must have been living in your affirmed gender for two years. This duration is understood as proof of commitment to your transness, and along with a medical diagnosis from a doctor and clinical psychologist makes up ‘enough evidence’ to formalise a transition. This idea of proof, or evidence, I find really interesting—how it imagines there to be a proper transness, and an improper and therefore not real transness.
An ability to provide evidence of a proven transness also depends on one’s ability to navigate these administrative systems successfully. I am still struggling with this process, which feels like an endless series of tasks designed specifically to frustrate a neurodivergent mind. It leaves me—as I write this—with an inconsistent identity that itself then generates further difficulty in navigating a world already displeased that I exist at all. This is, of course, intended. Layers of challenge and administrative tasks required by the state and other institutions exist to prevent what they would imagine as a ‘real’ transness from ever existing. The requirement of proof sets up the conditions for medicalised transness—gender dysphoria as suffering to be alleviated—as the ‘legitimate’ transness, and therefore as the transness that requires, and is deserving of, a medicalised cure and institutionalised care.
KW: In Western medical contexts, we have come to generally understand the desire for cure as the same as wanting to alleviate suffering. Often, these ideas are actually quite uncoupled from one another. This is revealed in the contexts of chronic illness, neurodivergence, and transness, where the desire for us to be cured leads to attempts to correct our mental and physical processes by realigning them with what is considered normal. An example of this is that while I can access state support for my travel to and from work, I can’t access state support that would allow me to work less, even though that would be far more beneficial to my quality of life, and would probably cost the Department for Work and Pensions less. This is because, to the state, not working or working less is unacceptable. The state doesn’t want me to be well, or live meaningfully—it is only interested in curative measures that can get me to work. I find this echoed on a person-to-person scale too; it's always “Have you tried x y or z” instead of “Can I come over and make you dinner, clean your house?”
AE: So then what does an alleviation of suffering mean in relation to resisting the idea of cure? For me, it would begin with questioning and unsettling the often-assumed experiences of suffering that we are speaking to. As an example, thinking about transness through dysphoria and the actions that are carried out to alleviate that dysphoria is not particularly useful. As a languaging of trans experience, this validates the state’s/doctor’s/society's request for proof and contributes to narratives of real and not-real transnesses. Instead, I like to think of transness as a play of, and with, sex. Play is often unconcerned with destinations, and more specifically is unconcerned with proof and questions of what is ‘real’ or proper. Rather than thinking of trans suffering as related to dysphoria, might we think of it as resulting from a policing of what play is allowed, and what play is disallowed? This bordering of transness is carried out in part by medical institutions, who will only prescribe hormones if you wear the frilliest of dresses to your appointment, and tell them about how you played with your sister’s dolls as a child.
KW: The superficial nature of these borders of what is permissible revealed themselves during the lockdowns, when all of a sudden adjustments which disabled people had been told all their lives were impossible were made available overnight for non-disabled people, and then similarly removed overnight when non-disabled people got bored of the whole situation. Of course, disabled people have known all along that, more often than not, it is these borders that produce barriers to our participation in the world, as opposed to our deviation from medical norms. I often try to imagine what my experience of chronic illness would look like if I could truly receive the kind of care I need and want. It is hard to visualise.
We often think about how medicalisation is present in our everyday lives in relation to the state, the NHS, our workplace, and so on. However, I think that a really pervasive way it operates is through our individual relationships, and how we collectively imagine what it looks like to express our care and love for someone. So often, particularly from friends and family, love is expressed through a desire for us to be cured. “Surely this isn’t going to last forever,” my nan says over the phone, eight years after my diagnosis. “Yes, I know it’s chronic, but surely not for you?” This is love as a punitive logic, love that imagines that you in particular don't deserve this, and therefore others do. Amy, in your pamphlet I love you forever is murder, you explore the idea that when someone comes out as trans, those who claim to love them often respond with an expression of grief. I think this is deeply related to our loved ones expressing their endless desire for our cure. In both situations, there is a denial of who we are, of something true about us, and that denial is imagined as love even though it is felt as rejection.
AE: Through both of our examples, there is a desire for an exception on the part of the person who claims to love you. It is as though they think that you, as the subject of their love, must therefore be above this tragedy of transness or chronic illness. It feels as though there is a relationship between punitive love and cure logic. People claim to love us, and that love is deployed through the desire for us to be cured and return to a before, when we were seen to be living closer to a medicalised norm. This love-as-cure mirrors the desire of the state for us to return to work.
Being trans often means having an affected relationship with your body, so I wonder what it means to love—or, to want to love—one’s body, and how that love is also in relation to cure? Maybe what's required is a transformation of love, through its separation from the desire to cure. What might that look like? I want to love my body—however naive that sounds. Maybe it is easier to identify punitive love that wishes for a cure within others than it is within ourselves. You have mentioned noticing in yourself a sense of ‘still being me’, suggesting that there is still a pre-disabled ‘cured’ Kaiya in there somewhere, making incursions into the way you understand yourself. How might we resist these incursions?
KW: This is where we find the potential for kinship, you and I, across specificities of marginalisation. Within systems that are oriented towards returning us to medical norms which are measured by a productive engagement, searching for modes of unproductive disengagement allows us to find glimmers of other ways of being. Instead of asking “How can we come up with ways to cope with work more easily?” there is more potential in asking, “How can we dream, together, of work no longer being necessary?”
AE: The playing that is my transness is both a resistance to a return to productive engagement through a cure, and a commitment to my survival—this play is my dreaming. I’m interested in how this dreaming is still in relationship to having to maintain a productive engagement with the world. I work to access material security that provides conditions for my trans-play, both now and into the future. In my particular case, I work for a university that misgenders me, and as a structure contributes to a world that desires me cured. I am situated within the tensions of this relationship, reminding me that it is not one or the other—this play is a play despite the world, in spite of the world, and to spite the world.
KW: That is a great example of how just because you are in an institution doesn’t mean you are of the institution—we can participate (out of necessity) in these systems without them becoming our horizon. While you identify play as resistance, in the context of disability—specifically chronic illness—this resistance to productive engagement is often positioned as rest. I don’t agree with this personally, particularly in the way that this is picked up by institutions as a palatable version of disability justice. Instead, I am more interested in idleness, which to me is quite different from rest. Resting is usually considered something you do to recover energy, to return to a state of productivity. Whereas being idle—you can have loads of energy and be idle, you can not be tired but be idle. Once you start indulging or choosing that as a way to spend your time, glimmers of other ways of living that are detached from cure and informed by desire begin to surface.
AE: Curative logics work its way into everything, including the ways we imagine resistance to them. Perhaps we cannot imagine ourselves beyond them, as we would then be curing ourselves of the desire to cure? So maybe our kinship might be found through the traversal of these tensions together, that you call dreaming and I call play. Kinship in resisting the incursions of cure into love for ourselves and each other, in resisting the desire to cure ourselves from cure itself, in finding ways to play, to be idle, our cripness and our transness as refusals to return to medicalised norms.