Bureaucracy as Method
March 2026
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I’ve been struggling with my self-esteem a bit lately. With trying to find the point in what I’m doing. I don’t feel the worst I’ve ever felt but I don’t really feel very good. I sought out free therapy, the NHS told me it was CBT or nothing, so I chose nothing. I found that the RCA offers 5 (reduced from 6 last year apparently) free counselling sessions for students. Better than nothing I suppose.
In my first session, online as my body refused to comply enough to be well enough to travel onto campus, I was asked to explain in my own words why I had an assessment and wanted these sessions. Well first of all, they're all I can really get right now - in an ideal world I’d find a long-term therapist who I could assess as much as they assess me, we’d grow together and it would be stable and spectacular. I wouldn’t have to rush out my thoughts for fear of not making the most of the time.
But I tried to focus on the task at hand, explaining I’ve been feeling quite shit lately and finding it hard to make work. I was worried about two things, wasting the opportunity I have being at an institution like this, and this feeling getting worse. Going back to a place that was far enough in the past that I felt almost free of it, but recent enough that I didn’t need to be reminded of how bad it was. I tell them that I am frustrated that I’ve been sick for this many years and I still feel like I hit the same roadblocks and get upset at the same things. That I still don’t really know how to balance pain and fatigue with my neurodivergence.
They tell me it sounds like I exist between a rock (ME/Long Covid) and a hard place (ADHD), with two contradicting treatment plans. I find myself relieved that they seem to be getting it quickly. I tell them I don’t seem to be able to make anything at the moment, both because I’m exhausted all the time from my experience at the college and by the time I am able to have time to make anything, I look at my ideas and all I feel is pointless. A pointless insurmountable task of being able to get from start to finish. My limited energy, both physically and cognitively, is already spent by all the extra steps I need to take to troubleshoot how to exist and how to be able to show up, figuratively and literally.
My therapist asks me what, in an ideal world, could be done to make my experience better. I explain there’s three levels to answering that question, I assume systemic isn’t a helpful answer for this exercise neither is thinking about broader institutional change. So I choose the most closely imaginable - I want this to be someone else’s job. I want to have been able to show up on my first day easily and engage in the resources, community and spaces in the institution without the additional prep work of anticipating, responding to and managing access gaps.
The Disabled Students Allowance funds specialist support for study skills (I get an hour a week) but refuses to fund any PA style roles, stating this is the responsibility of the institution. The institution offers advisors and facility specific support, but each thing you do requires finding the person who’s job it is to hopefully go beyond the majority of their day-to-day and help you out. Constantly introducing yourself to different people, explaining what you need and waiting for them to figure out who’s job it is to accommodate you, if they can. Access to Work, the service responsible for supporting disabled people in work through funding travel, support roles and equipment and currently being decimated by the current government, wouldn’t fund support whilst studying.
So I’m stuck between another rock and another hard place. I’ve managed to get a wheel into the door of the institution and enrol, but I am constantly coming up against the extra work I have to do to be able to be there and try and make anything of it, let alone the most of it. It’s not that people haven’t been helpful at the college. It’s just the nature of showing up to a place that isn’t designed with you in mind. How do I ask for help when such a fundamental part of the issue is that I find it hard to hold all these things in my head anymore? How am I meant to know what to ask for when I don’t know what’s possible, or even know what barriers I’ll come up against until I hit them?
***
Later that day after that first session, I lay in bed watching Joseph Grigely’s 2018 lecture “Thank You: On What it Means to Care” projected onto my ceiling. Grigely is deaf and makes a point about the talk he would have wanted to give when invited to speak, but instead the negotiations around accessing interpreters prompted him to write a talk about access and care. About doing more than the bare minimum. About the additional role of the disabled artist, which is to explain, justify and negotiate your needs constantly. The work you have to do in order to be able to show up and do the work you’re meant to be doing. As I lay there with an ice pack on my head and a heat wrap on my back, I find myself crying in response to his reflections that feel so attuned to my session earlier that day.
“As an artist with a disability,” he explains:
You are almost always causing trouble. It’s not just about the
‘art’, but, increasingly about the public presence of the artist, and this is where the body of the artist becomes part of the body of the work. Making art and being an artist are not the same thing. Making art is a very intense pleasure. It’s often just you and your medium. But being an artist is largely about bringing work to the public — it means interacting with gallerists, curators, and other people on a constant basis. It means phone calls and conversations and meetings and site visits and airports and hotels and installations and openings and dinners after the openings. It means, inevitably of becoming an activist on behalf of yourself. The art world never lets you forget your difference: you are constantly subject to the gravitational pull of rationalizing about it.In my first session, online as my body refused to comply enough to be well enough to travel onto campus, I was asked to explain in my own words why I had an assessment and wanted these sessions. Well first of all, they're all I can really get right now - in an ideal world I’d find a long-term therapist who I could assess as much as they assess me, we’d grow together and it would be stable and spectacular. I wouldn’t have to rush out my thoughts for fear of not making the most of the time.
But I tried to focus on the task at hand, explaining I’ve been feeling quite shit lately and finding it hard to make work. I was worried about two things, wasting the opportunity I have being at an institution like this, and this feeling getting worse. Going back to a place that was far enough in the past that I felt almost free of it, but recent enough that I didn’t need to be reminded of how bad it was. I tell them that I am frustrated that I’ve been sick for this many years and I still feel like I hit the same roadblocks and get upset at the same things. That I still don’t really know how to balance pain and fatigue with my neurodivergence.
They tell me it sounds like I exist between a rock (ME/Long Covid) and a hard place (ADHD), with two contradicting treatment plans. I find myself relieved that they seem to be getting it quickly. I tell them I don’t seem to be able to make anything at the moment, both because I’m exhausted all the time from my experience at the college and by the time I am able to have time to make anything, I look at my ideas and all I feel is pointless. A pointless insurmountable task of being able to get from start to finish. My limited energy, both physically and cognitively, is already spent by all the extra steps I need to take to troubleshoot how to exist and how to be able to show up, figuratively and literally.
My therapist asks me what, in an ideal world, could be done to make my experience better. I explain there’s three levels to answering that question, I assume systemic isn’t a helpful answer for this exercise neither is thinking about broader institutional change. So I choose the most closely imaginable - I want this to be someone else’s job. I want to have been able to show up on my first day easily and engage in the resources, community and spaces in the institution without the additional prep work of anticipating, responding to and managing access gaps.
The Disabled Students Allowance funds specialist support for study skills (I get an hour a week) but refuses to fund any PA style roles, stating this is the responsibility of the institution. The institution offers advisors and facility specific support, but each thing you do requires finding the person who’s job it is to hopefully go beyond the majority of their day-to-day and help you out. Constantly introducing yourself to different people, explaining what you need and waiting for them to figure out who’s job it is to accommodate you, if they can. Access to Work, the service responsible for supporting disabled people in work through funding travel, support roles and equipment and currently being decimated by the current government, wouldn’t fund support whilst studying.
So I’m stuck between another rock and another hard place. I’ve managed to get a wheel into the door of the institution and enrol, but I am constantly coming up against the extra work I have to do to be able to be there and try and make anything of it, let alone the most of it. It’s not that people haven’t been helpful at the college. It’s just the nature of showing up to a place that isn’t designed with you in mind. How do I ask for help when such a fundamental part of the issue is that I find it hard to hold all these things in my head anymore? How am I meant to know what to ask for when I don’t know what’s possible, or even know what barriers I’ll come up against until I hit them?
***
Later that day after that first session, I lay in bed watching Joseph Grigely’s 2018 lecture “Thank You: On What it Means to Care” projected onto my ceiling. Grigely is deaf and makes a point about the talk he would have wanted to give when invited to speak, but instead the negotiations around accessing interpreters prompted him to write a talk about access and care. About doing more than the bare minimum. About the additional role of the disabled artist, which is to explain, justify and negotiate your needs constantly. The work you have to do in order to be able to show up and do the work you’re meant to be doing. As I lay there with an ice pack on my head and a heat wrap on my back, I find myself crying in response to his reflections that feel so attuned to my session earlier that day.
“As an artist with a disability,” he explains:
I started on a great course at a ‘world-class’ institution, and in the first six months my practice has been bureaucracy. My current creative practice is emailing the DSA. My current practice is calling Capita’s complaint lines. My current practice is waiting to find out what the college is deciding regarding extra technician support so I can actually use facilities I want to. My current practice is wrangling with the DSA over trying to get my cab journeys reimbursed. My current practice is waiting six months for my ergonomic and assistive technology to arrive, and just making do in the meantime without feeling like I’m drowning.
My practice is complaining on my first day that the lift was broken to my first lecture. My practice is responding to hearing that the lift breaks regularly in that building and will continue to go through the cycle of working, broken, repairing until someone has the time to replace it. The lift is being maintained to make do. I am maintaining myself to make do. We are both continuing to break under conditions that don’t work for us, patching ourselves up for short-term necessity.
My practice is finding myself relating to a perpetually faulty lift that needs lots of breaks in service. My practice is trying to ignore the 13+ months that my PIP award has been in review, hoping to not receive a letter that it’s been pulled and trying not to think about how I won’t be able to afford to do this anymore if so. My practice is post it notes doing haphazard maths to work out how much I can spend on materials with my Universal Credit, after trying to close the gap between student fees and my loan and scholarship funding.
My practice is smiling politely when someone says it’s nice to see me on campus (as I rarely can get there intact). My practice is the constant calculating of how much can I engage in my social life without making myself sicker. My practice is the constant calculating of how much can I engage in my social life without ruining my ability to do my course.
My practice is looking for signs of cripness in my peers, mostly through a zoom screen. My practice is trying to find disabled groups and networks at the institution and wondering how much further it would deplete me to set something up myself just to soothe feeling so alone. My practice is evaluating the trade off between the resource and prestige of big institution vs the care and feeling of being known in community, artist-led spaces. My practice is crying tired tears, pained tears, frustrated tears. My practice is yearning for a version of myself that has more resilience than this.
My practice is asking people why they’ve overlooked a disabled perspective in their research, to be told that researchers can’t accommodate for everything and have to specialise - yet somehow they always seem to specialise in the imagined world that’s disability free. My ‘creative’ practice is trying to keep up with medical appointments and new care plans at the same time as my classes.
My creative practice is the never-ending writing of emails that try to find new ways to say “I’m sorry but I am not well enough to join this session in person. Are you able to provide a zoom link to join remotely?”. My practice is trying to find grace for myself as I sit on the other side of a screen, watching group discussions play out without me as I am curled up in bed. My practice is managing to get to campus and trying to focus on in-person discussions whilst my body’s pain and energy levels beg me to book a return cab home. My practice is pretending that I know where things are, pretending not to be someone who still hasn’t got their bearings six months in because they’re simply not around as much as anyone else.
My practice is coming up with creative and novel ways to respond to the question “Oh you’re part time! So what else do you do?” without just saying “I rest, I recover, I play catch-up. Everything takes me twice as long as you.”
***
My partner comes over to clear a corner of my room ahead of me finally receiving a desk and chair from the DSA. I am stuck in bed having a flare up. I punctuate her help with apologies and try to self- censor mutterings riddled in shame. I try to let myself feel loved and cared for, rather than sick of myself and the piles of my belonging she asks me where to move to.
I vaguely remember a time long ago when I didn’t have to live this way, surrounded by medications and snacks and Huel and various pain relief. When I was able to not have to rely on having so many things taking up space in my houseshare and in my room because I am so often stuck here. My practice is allowing myself to evolve from a Huel hater to having a monthly subscription.
I’ve now had my desk for a few days and I am surrounded still by piles of stuff that I haven’t been able to put back. I can’t summon the emotional strength to ask her to come over again and help me just yet. I make just enough room in my bed to sleep beside some of them for a few nights. I try and fail not to feel shame for my inability to better manage the maximalist approach this life warrants. I keep my door closed to try and maintain a futile sense of privacy, as if my housemates don’t know me by now. I try not to feel disgusted by myself, that this room that I spend most of my time with is so unfinished, that it’s never organised for long enough. That I’m never well enough to finish tidying or cleaning or organising, I’m just constantly doing as much as I can. My room becomes the lift down to Lecture Theatre 1. My room and I merge into each other. Maintaining each other just enough to go for as long as we can before we fall apart and have to start again.
The new desk is adjustable in height. I press a button to raise it to rest my head on my arms after writing this, until I can muster the energy to cross the room to return to bed
If you’d like a physical copy of ‘Bureaucracy as Method’, please contact me