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A journal for storytelling, arguments, and discovery through tangential conversations.
"I'm still here, still alive, still valuable, even when I can't get out of bed": in conversation with Hannah Bullock
Tuesday, December 21, 2021 | Hannah Doucet

2020-09-16 at 11:19:28 AM,  
screen capture from video, 2020.



Hannah Bullock is a visual artist and writer based in Toronto. Her work explores her lived experience with chronic pain, through printmaking, video, sculpture, drawing, performance and writing. As part of a poetic essay video 2020-09-16 at 11:19:28 AM, Hannah’s voice calmly and firmly recites, “I can’t stop my immune system from failing me from time to time or maybe I could if I took better care of myself. But it’s hard to take care of yourself when your own body doesn't take care of you.” With this work, Hannah draws you into an intimate space of her personal computer desktop and her own world of grappling with chronic pain, the medical system, and her own theorizations around illness. 

I first met Hannah in 2018 when we became members of the same MFA cohort. Our studios were beside each other, our names both Hannah and both with work centred within the vast thematic of “illness”. Over our two-year program, we became close friends, becoming intimately familiar with each other and our respective practices, and maybe crying to each other via zoom once or twice. In the haze of finishing our studies, we began this conversation via email, as a continuation of our sharing over the past two years. We messaged each other questions and responses back and forth, slowly and persistently throughout the Summer and Fall of 2021. 

Within the conversation, we discuss some recent projects, her exhibition a low hum, a strong gale, her video work 2020-09-16 at 11:19:28 AM, commissioned as part of PostScript, an online series of sessions on disability, accessibility, and digital publishing, as well as her ongoing writing practice. Through our discussion of these works we touched on many diverging topics; pain and its relationship to identity, crip time as time travel, autotheory as a driving methodology, access needs and method, BDSM, and collaborating with her grandmother. We covered a lot. Throughout, Hannah shared generously and honestly about her practice and process, carving out a space to dig deeply into ideas of pain, productivity, and artmaking. 



I've said this so many times before but sometimes I feel like the primary function of my work is just to continue to assert that I'm still here, still alive, still valuable, even when I can't get out of bed.



Hannah Doucet: I have really valued being witness to your practice over the past two years and seeing the ways it has changed and developed. In particular, when I first met you, you were very devoted to printmaking as a medium. Over the past two years you've really shifted away from that, how do you position this move away from printmaking conceptually within your work? 

Hannah Bullock: I've enjoyed witnessing your practice so much too. It's been such a pleasure to work alongside you. I'm so happy to know you.

I've always loved printmaking—but when I started my Master's I started thinking more critically about the work I was making and my approach to making it. I was making work about my chronic pain, and thinking through my own identity as crip/disabled, but the methods I was using were so laborious that they were negatively impacting my well-being in a significant way. I had to find these moments where I felt relatively ok (and capable of carving a woodcut or using a heavy rubber brayer or operating a press) and use all the wellness I had in me to make my work that was about illness. I was completely burning myself out with no consideration for my own access needs. I knew the work would make me feel (extra) shitty but I was doing it anyway. I was tying the value in my work to the physical effort I put into it, and the damage I was inflicting on myself as a result. I loved the process, but it started to feel totally contradictory to everything I was making work about. 

My shift away from it is all in an effort to accommodate my own needs within my practice. I've started looking for ways to make work that don't exacerbate my pain, that I can do when I'm in too much pain to get out of bed. It feels like this really important shift in wrestling with my own internalized ableism. When I was printmaking, I was literally 'suffering for’ my work—and fuck that. 

Your work really strongly addresses these themes of accessibility, pain, labour and rest all through the lens of your own embodied experience. As you mention, these changes in your practice have shifted your work away from the site of the artist's studio/ print studio and to the much more intimate and personal space of the bedroom or specifically your own bed. For many disabled artists and thinkers, the bed is a very charged and important space, both as a space of safety, rest and care but also perhaps a space of pain, isolation...How does your bed exist as both a practical tool and material in your life and practice as well as a symbol within your work? And how do you think about the bed more generally as a space that intersects with a lot of critical disability theory?

I'm really thinking about where this idea of the “sickbed” intersects with the “workbed”. I've been working from bed for as long as I can rememberout of necessitybut up until pretty recently wasn't considering it as a space where I could be actively political. Again, coming back to my internalized ableismit's a charged space in that I had always felt (and sometimes still feel) like a failure when I was/am stuck in bed. Also, just isolated and invisible. I was reading Care Work: Dreaming Disability Justice by Leah Lakshmi Piepzna-Samarasinha recently and had this holy shit moment. In the introduction to the book, they refer to working-from-bed as a time-honoured crip creative practice. And they say that they wrote the book "mostly in the majestic disabled revolutionary space of writing from bed in old sleep pants". It just clicked in a way it hadn't before that so much of disability justice is done from bed, and it doesn't make it any less viable or politicalit just looks a lot different than our traditional understanding of 'activism'. I’ve been engaged with disability theory for a long time, but it still hadn’t occurred to me how symbolic and powerful the sick/workbed can be as a material, a tool, a site of action (and inaction). It took an author saying that they wrote their book almost entirely from bed for me to fully realize that that was a thing that could even happen at all. It's so resistant to normative ideas about what makes a good scholar, activist, writer, thinker, theorist—because we've learned to see the bed (especially the sickbed) as a space that strips the person in it of everything that gives them a voice worth listening to. We're taught to view the bed as a black hole where the sick and disabled cease to matter or even exist at all.

Within my own work it's a practical tool because a lot of the time I just need to be in bed. But it's also this symbol of making visible the invisiblemy illness, my limitations, my private space and most vulnerable moments. I've said this so many times before but sometimes I feel like the primary function of my work is just to continue to assert that I'm still here, still alive, still valuable, even when I can't get out of bed.

11.18.2020, 14 minutes, ink on paper, 2020. 


11.19.2020, 28 minutes, ink on paper, 2020.



11.18.2020, 24 minutes, ink on paper, 2020.



In line with this, so much of the work from your recent exhibition a low hum, a strong gale  is created from your bed. One part of your show is a series of drawings you made while lying in bed. Using an instrument that you created that attaches to your torso and has a marker at the end, you lie in bed breathing, and create a series of drawings. I'm really fascinated by this performative process—but also the drawings as a remnant or marker of that process. Could you talk more about the drawings and how you think about them in reference to your own breath? 

The thought process behind using my breathing as a method of producing work was firstly, because breathing is something I can always do no matter how terrible I feel, and secondly, because a physiotherapist once told me my chronic pain has changed the way I breathe, and that now, because of my pain, I do it 'all wrong'. So I started to think about breathing as this marker of my deviant embodiment. It's all I can do sometimes, even if I'm not doing “right”. 

The drawings become this documentation of my breathing for a chunk of time on the days they were each made. I’ve thought about them a lot as this marker of time passing—but not in a linear sense. Instead, I'm thinking a lot about them in relation to the concept of 'crip time'. At the risk of oversimplifying, crip time is the understanding that disabled and chronically ill/pained folks have a different relationship to time, resistant to normative ideals of progress and productivity. I like the way the drawings work through this idea of passage of time. The viewer knows that each one is representative of a certain period of time, but they don't necessarily show any “progress” being made. Like—if I made a drawing today, it wouldn't necessarily look 'better' than one I made yesterday. They are messy and jagged and unpredictable just like life with chronic pain. 

I love the moment in your recent video work 2021-05-17 at 12:48:50 AM, where you type “crip time” into the university libraries database and the search engine spits back “chip thyme”. [laughs]

But I have also seen you write about “crip time” as time travel, how do you or others you look to think about this concept of time travel/ crip time. 

[Laughs] Yes, the database suggesting I intended to search for ‘chip thyme’ was simultaneously surprising and not at all. Hilarious, but also dark. The library (and the institution) still seem to think ‘crip’ is a bad word. I was recently in a zoom webinar called ‘Cripping Sex Education’. The live captioner was late, so I was watching the auto-generated captions—a tool built for accessibility was failing to recognize ‘crip’, ‘cripping’, and ‘ableism’, replacing them with ‘crypt’, ‘creeping’, and ‘atheism’. It made me laugh, in a way that felt like self-defense.

Yeah—so like I said, for me, it’s this really broad term that describes this understanding that disabled and chronically ill or pained folks move through time in a way that’s deviant, or resistant to norms. Ellen Samuels essay 6 Ways of Looking at Crip Time is a wonderful reference for understanding the idea! It can mean so many different things, but as a whole gives a name to this understanding that disabled bodyminds relate to time in a completely different way than most. It could be the result of a need to constantly grapple with and be confronted with our own fragility, vulnerability and mortality—or, the need to barter time carefully, according to what our deviant minds and bodies will allow. There’s this ever-present knowledge that you are running out of time and that you must carefully select how you use each moment. The knowledge that while time is limited, pleasure and productivity have to be too if you want to get out of bed in the days that follow. It can look like being in your 20s but waking up so stiff every morning you feel like you're 80, or being endlessly trapped in the present because you are forced to constantly be mindful of every physical sensation you experience. It can look like so many different things for so many different bodyminds.



The complexities of wanting to be a ‘better’ person—and knowing that being rid of pain would help me perform better, work harder, do more and meet expectations, are deeply entangled with desires to continue to push back against structures that have taught me what makes a person valuable.



The concept of “cure” is a complicated one in disabled and crip communities. In your recent thesis paper you wrote: “I grieve for my able-body and conversely, I fear what it would mean to lose my disabled one.” How do you think through your own relationship between pain and identity? 

There are so many layers to this idea of cure and how I relate to it. Circling back to the crip time thing—at some point, I realized that if I was constantly living in anticipation of cure or resolution I wasn’t really living at all. It’s not to say that I’ve given up on trying to manage or reduce my pain. It’s just like—at some point you have to stop holding on to the idea that you might get to be completely pain-free again. For so long I held onto this idea of wanting to go back to “normal.” But, it’s been 11 years and I think it’s fair to say that this is my normal now. My pain is not some tragedy that has destroyed my life. There are moments of terrible grief associated with my chronic pain but, there is also pride and joy associated with what my particular embodiment has made—and continues to make—possible.  

Beyond just accepting the fact that I’m in pain all the time and will probably continue to be—it’s become such a part of my life, and shapes every decision I make on the day-to-day and on the larger scale as well. I’m trying to stay in academia forever because I’ve had to quit every job I’ve ever had because they were just not physically sustainable. But I’m happy about where I am. I definitely wouldn’t have ended up here without my chronic pain. It becomes scary to think about who I would be if I woke up one day and my pain was just gone. It’s been my entire adult life now, and I can’t imagine what life would look like if I were suddenly able-bodied. The complexities of wanting to be a ‘better’ person—and knowing that being rid of pain would help me perform better, work harder, do more and meet expectations, are deeply entangled with desires to continue to push back against structures that have taught me what makes a person valuable. I want to be in less pain, and in pain less often, but I don’t want to change who I am. 

As I keep on referencing, you also have an active writing practice. How does your writing practice manifest in your day-to-day life? Do you view it as distinct or very much a part of your visual practice?

I’m still in denial about being a writer. I’ve never thought of myself as one, but it’s something I’m shifting towards more and more. I think it is really tangled up with my visual practice. It gives me this way of contextualizing my work-—and I think often the writing is what resonates most with people. I just started making notes in my phone a really long time ago when I was thinking through something, and it continued in this direction where most of my writing is a bit fragmented and non-linear, but also really vulnerable and personal. I think this fragmented style of writing is so in line with living a life with chronic pain—where time dissolves into small bits and pieces where I’m actually able to accomplish something. Also, I can write in bed which is a huge plus. 



21-05-17 at 12:48:50 AM, screen capture of video, 2021. 



Your recent video 2021-05-17 at 12:48:50 AM  (the one that includes “chip thyme”) is a great example of your written and visual practices merging within one work. How did you decide upon this form of the desktop documentary, and what was the process like of making the video? 

I was so nervous about making a work that used my writing in this way. Listening to your own voice is hard as fuck [Laughs]. I actually first thought of using desktop recording in our summer course (which was focused on writing). It was all on zoom so I was trying to think of a way to share visuals that referenced the piece of writing I was reading in a way where I wouldn’t have to pull everything up while I was talking. So I just made a desktop recording of me pulling up all the visuals I wanted to share, somewhat in line with the pacing of the writing. It essentially started as a way to calm my nerves for a presentation and avoid the added pressure of multitasking. But it also felt like a really simple way to contextualize the work I was doing, while playing further into this idea of vulnerability. Maybe it’s just me, but every time I have to screen share I feel so exposed. Like suddenly I feel very naked and concerned that something extremely embarrassing or incriminating will be on display. And I think having this video of me sharing my desktop screen, and playing videos of me breathing/drawing in bed, and showing my medical records felt like a way to let the viewer into my private physical space—but also my private digital space. Both the digital space of my laptop and the physical space of my bed have become really essential to my work as tools that make my practice more accessible to me, and I think to the viewer as well. 

Over the past few years both of us have been really drawn to autotheory as a driving methodology within our practices. Alongside many other sick, crip and disabled writers that similarly weave the auto with the theoretical, why is autotheory an important methodology in your own visual and writing practice? 

My work is so grounded in my own experience that it feels impossible or disingenuous to remove the ‘auto’ from the ‘theory’. Especially within the context of disability justice, when I’m thinking through my experience with illness and pain, I think it’s really important to acknowledge that my lived experience is uniquely my own. Disability justice is so much about the value that deviant bodyminds can bring to our understanding of the world. My embodied knowledge is just the lens through which I view crip theory.

So autotheory for me is this approach that acknowledges that my disability is very specific to me and by no means is a broad representation of the disabled experience. But it’s also one that can bring into focus the importance of centering disabled voices precisely because of how widely bodyminds and access needs vary. Centering crip voices can remind us, over and over, that it is not an individual failing to have individual needs. And I guess the hope is that my voice can be just one small reminder of that. 



Centering crip voices can remind us, over and over, that it is not an individual failing to have individual needs. And I guess the hope is that my voice can be just one small reminder of that.



Within your current body of work you collaborate with your grandmother on a series of gowns. What was that process of collaboration like? 

She is a retired general practitioner and she loves to quilt and sew—she used to make me costumes to play dress up in when I was a kid, and she’s made at least one quilt for all of her children and grandchildren. I stole a hospital gown from a recent MRI appointment on a whim and wasn’t really sure what I wanted to do with it—but after a while, I thought of her. I asked her to make a pattern out of the original gown and from there, make replicas in different sheer fabrics. I was thinking about different notions of care, and the tensions between them. Both in the medical acts of care and in the way I see her sewing: a means of expressing her love, a careful and tender act. This type of care in the traditional, and loving ways we understand it is so often overlooked—but has done so much more for me than any form of medical care (which is so directly focused on treatment or cure) has. I think it’s so powerful because it directly contrasts this idea that someone is trying to ‘fix’ you. 

The gowns my grandmother made work in opposition to the hospital gowns' primary function: to conceal the body, to act as a uniform identifier of the passive patient. Together, we collaborated to decide how they should look. The fabrics are a distinct contrast to the utility of a hospital garment. In their sheerness, they’re coming back to this idea of making visible the invisible: my experience of pain and her “invisible” acts of care.

To do a 180. I’m really fascinated with the relationship between chronic pain and BDSM you draw out within your workdid that connection surprise you? Can you speak to how you think through that theme within your work?

This connection did really surprise me. When I started refining my drawing tool you and several others mentioned that it seemed to reference kink, or that it looked like a bondage harness. I was also using latex surgical tubing because I love the colour of it, it was functional in it’s stretchy-ness, and a subtle reference back to medicine, but realized that latex is also a very common material used in kink garments. 

When people brought up that connection I started thinking through italthough initially, I was hesitant because y’know, it felt mostly irrelevant, and talking about my sex life and kink in an academic and artistic context (not to mention alongside a collaboration with my grandmother) was something I wasn’t entirety comfortable with. But when I started thinking through it, my own interest in kink and the connections it shares with the work I’m doing started to feel really significant and unavoidable. 

So much of my life has been actively concealing my pain. There are many reasons for it—and it’s extremely common in chronic pain sufferers. There is the need to feel you are in control of your pain, there is the need to feel you are in control of how you present yourself. There is the fear that expressing your pain will make people uncomfortable, or just annoyed and bored because it’s the same shit you tell them every time you see them. 

Kink—and more specifically enacting the role of the submissive who receives pain—can operate as a counterpoint to the experience of chronic, non-consensual pain. And for me, it really functions as a space where pain can be expressed without judgement, dismissal and abjection, and instead is welcomed and pleasurable. There is someone there witnessing you endure and react to pain and enjoying bearing witness. And that isn’t a thing that just happens when you live with chronic pain or illness. People don’t enjoy witnessing your constant sufferingin fact, for the most part they would like to make it stopand that makes sense because you know, you’re not necessarily enjoying it or asking for it either.

As a submissive who consensually receives pain, you are actively choosing, surrendering to, and expressing the sensations—knowing that you are able to control the intensity, the type, and the duration of the pain. No one pities you or disbelieves you, or is made uncomfortable by you. You set the boundaries. You don’t have to hide anything. You are in pain and you are desirable. Alongside the pain, not just in spite of it.

The same applies to bondage and restraint. In disability, your bodily limitations are unchosen and beyond your control. In BDSM, they are shaped to adhere to your desires and boundaries. BDSM for me not only operates as an empowering way to express and control my experience of pain and physical limitations but creates a space to temporarily reconstruct my own relationship and experience of my embodiment.



a low hum, a strong gale, exhibition documentation at Gales Gallery, 2021. Documentation courtesy of Blake Hannahson.


a low hum, a strong gale, exhibition documentation; materials are brass, latex surgical tubing, latex, 2021.



One thing you grapple with a lot within your work is how to communicate your pain to others, whether to one of your countless doctors or a loved one. That seems to be such a common thread in your work, putting language or visuals to the way a body can feel.  

You have plans to take this translation further, creating scores or soundscapes to accompany your drawings. I think there is this really beautiful cyclical act occurring, moving from performative gesture, to drawing, to sound. 

I'm really excited to see this next stage in your work happen. I love this translation, that feels endlesswhen does this cycle of translation end? And how is the notion of accessibility bound up in this? 

I’m not sure if/when/how this cycle of translation will end. Creating sound pieces to coincide with each drawing feels like a very clear next step: not only for access reasons, but because the drawings themselves look like they could be sound waves or transcription of sound. I’ve had audio descriptions done of my work before and so often it feels so detached from the actual intent of the piece, or so highly impersonalwhich is so contradictory to my work. My partner is a musician (hi Steve!) and this is something we’re planning on collaborating on. I think a lot about how he understands the process of my work and my access needs on a different level than anyone else strictly because of his presence in my lifeand it just feels perfect for him to be the one to translate the images to sound pieces. We are collaborators in so many other aspects of our lives, so it’s like...why wouldn’t we collaborate on this too?? My hope is that in working with him on this it can become a representation of access intimacy and interdependence: the ways we depend on and support each other and navigate the relationships with and between our very different bodyminds. It’s also exciting to me to explore a different narrative about a partnership between a disabled person and a non-disabled person—the stories we’re used to seeing about this are almost always framing the disabled person as inferior, dependent, an object of pity, and their non-disabled counterpart as heroic and selfless. This project will be a true collaboration, where we both offer unique and valuable perspectives and skillsets: just like our relationship.

I don’t want accessibility to be an afterthought in the work I'm making, or just a box I check after the work is already completed. I want it to be wrapped up in the process and the outcome. I want my work to be accessible to me through the process: allowing me to work from bed, and to depend on other people when I need to, but I also want it to be accessible to as broad an audience as possible. Access will never be one size fits all and I’m so excited about experimenting with different methods of collaborating and improving the accessibility of my work.

I love that and I so look forward to seeing this collaboration come together. 

Over the past two years, we have consistently been drawn to similar writers and books. I always like hearing what texts you have been thinking through. To finish off our conversation, what have you been reading over the past few months?

I’ve fallen a bit behind on my reading to be honest. I recently read What Doesn’t Kill You: A Life with Chronic Illness - Lessons from a Body in Revolt by Tessa Millerwhich has some really hilarious and well-done personal narrative about her experience with Crohn’sbut it was also a bit of a how-to guide on navigating a life with chronic illness in the U.S. in particular. So I loved like 50% of it and the other 50% felt a bit irrelevant to me (just because navigating medical structures in the U.S. is an entirely different beast than it is here). It’s still interesting—just not necessarily something I felt I needed to learn about in the form it’s presented in, which really does feel like a ‘lesson’  at times (guess I should have known based on the title). One that really stuck with me and I continue to think about all the time (and I think I’ve told you to read at least 3 times) is Brilliant Imperfection: Grappling with Cure by Eli Clare. And I just started A History of My Brief Body by Billy-Ray Belcourt and I can already say I would strongly recommend it! 

Thanks so much for sharing with me Hannah. I love the way you write, think and make, so it is always so special speaking to you about your practice. 


Hannah Doucet is an artist and arts educator from Winnipeg, on Treaty 1 Territory, currently based in Tkaronto.

Thanks to Hannah Bullock for sharing generously throughout this conversation.