One afternoon last spring, I collected a bag of small stones from the dried out river in my local park. The next day, I took them with me to a lecture I was giving to graphic design second year students about my research. I began by introducing the following quote from artist Johanna Hedva’s talk ‘My Body Is a Prison of Pain so I Want to Leave It Like a Mystic But I Also Love It & Want it to Matter Politically’:
“I ask those of you who do not suffer from chronic illness, pain, injury, disability, or past trauma to take a rock and put it in your shoe. Please keep it there for the duration of the talk.”
I had expected the students to take the bag and pass it on, but in their apprehension, I ended up going around all 90 odd people in the room and offering them the open pouch in turn. Many took a pebble from me. Many turned to their friends to churn over and negotiate their position within the prompt, and many gave a quiet no thank you, held a hand up in polite refusal, looking me in the eyes in an exchange of recognition.
Despite this activity only addressing one of the many constellations of marginalization that materialize in the classroom, each body in the room was individually and materially acknowledged, and offered something material in turn. Not only the pebbles themselves, but my physical labor of approaching every one of them, of eye contact, of my vulnerability in the face of their own. This exchange had a particular tone to it playing out within a design classroom, where embodiment is often discouraged. Instead, the body is regularly reduced to a standardized element within a design system, think of graphic sight lines or the mobility presumed by exhibitions. Hedva’s exercise required the students who took a stone to sit, literally, in the discomfort of their privilege, the stone in their shoe and the pain it causes emblematic of the omnipresent pain of moving through systems not designed for you. And crucially, this exercise framed being non-disabled as a lack instead of the other way around.
In the essay collection Teaching to Transgress, bell hooks wrote: “Trained in the philosophical context of Western metaphysical dualism, many of us have accepted that there is a split between the body and the mind. Believing this, individuals enter the classroom to teach as though only the mind is present, not the body.” As a chronically ill design student, and now a design lecturer, I have internalized the dualism hooks described over and over again—yet to be chronically ill is to have a body that insists on its presence.
Whenever I used to imagine myself perhaps teaching one day, I always imagined another me, one that doesn’t exist. This other-me is able-bodied and healthy. She’s financially stable. She has a body that has spent time reading, preparing, and considering my students with the depth and sensitivity that I, in the past as a student, expected. This other-me doesn’t spill things, menstruate, or constantly have a grubby hanky out; in short, this other-me doesn’t have a body, and especially not this one.
Every time I walk into a classroom today, I am reminded of the reality: I am in pain, stiff, slow, and overwhelmed. My skin is breaking out. I have coffee breath, my period overflows, and I flush with embarrassment if someone I know walks past me while I wait for the lift that I use to minimize the chance of a pain flare up.
My disability being largely undetectable to the non-disabled eye provides me a lot of affordances; it also forms a mask which I feel the pressure to keep up. From heading down a side street so nobody sees me get into my state provided taxi, to hiding a hot water bottle under my jumper, this masking is totally at odds with the justice-oriented framework I try to embody; one which understands able-bodied supremacy as formed in relation to other systems of domination, such as white supremacy, racism and transphobia. “Disability Justice” was coined in 2005 by the Disability Justice Collective, which was formed by Patty Berne, Mia Mingus, Leroy Moore, Eli Clare, and Sebastian Margaret—an activist group of queer, trans, and intersex people of color and white people.
Design education, as with most other spaces, vibrates with the normative systems described by the Disability Justice Collective, catering to one kind of body (able, white, cis gendered) while patholizing those that deviate. These norms are further propped up in this context by canonical design history and narratives intersecting with academic tradition; from intense 24/7 work cultures, expectations to travel for last minute meetings, drinking pressures, lack of regular breaks, to financial precarity produced by insufficient student loans and fixed term contracts made opaque through layers of bureaucracy. As both student and teacher, these norms quickly become barriers to bringing our whole selves to the tasks of knowledge-making.
The barriers disabled people face are often identified as purely physical, such as who is literally able to enter studios and use workshops—ie. architectural concerns only. And unfortunately, many universities fail to deal with even these most explicit of barriers. Even for those that do have basic provisions in place, the ability for such institutions to think deeply about an issue which is so granular becomes harder and harder with increased cuts, the merging of programs, and the centralizing of student support that I have experienced in the UK. Who is able to enter such spaces is the result of who is expected to enter such spaces—who they were designed for. But such expectations don’t only form physical barriers, they also form attitudinal, programmatic, communication, and legal barriers.
In the second year of my undergraduate studies, we had a module on design and ecology which I had been very excited about all year. As it approached though, a sense of dread swelled in my stomach. It was a week long intensive, and my health only enabled me to attend class a couple days a week, meaning I would miss out on most of the teaching. When I tried to discuss this with the module leader, she simply remarked that it was only one week and she was sure I could manage. I made it out of the room before I burst into tears.
This is an example of how barriers are folded into the material makeup of the University. While I could architecturally enter the room, programmatic barriers (barriers caused by presumptions about my ability to do things at a normative pace and schedule) and most of all attitudinal barriers (my teacher presuming her students were non-disabled) are what actually prevented me from accessing the learning in that space. From being told I was “too young” to be using the lift, to having to sit out of movement workshops “accessible to all,” I had so many encounters like this as a student that recalling them just makes me tired. They all told me the same thing: this place wasn’t for me.
As disabled design educator Josh A. Halstead says, “when it’s okay to erase human diversity, you don’t plan on diverse bodies being around, and so you don’t design for them.” Crucially, this operates twofold in the context of the design classroom: we are designed out of the classroom through the maintaining of barriers to participation, and so then designed out of applying the particular knowledge produced through our lived experience to the designed world.
Of course, pain and privilege are nowhere near as binary as the Hedva quote I introduced my lecture with suggests. But this was an exercise in acknowledging positionality, pointing to the knowledge that is particular to the constellation of experiences we call disability. Despite the manifold material barriers we face, across the two institutions I teach at, 17-20% of the student body have a registered disability, higher than the national average. From my own student experience, I would assume that there are many more who are disabled but haven’t let their college know.
Design, with its unique ability to move between the everyday and the systemic, is a necessary tool for disability justice, and the worlding that is required to reorient towards such futurity. Yet in the design classroom, we are miles behind other creative educational practices at honoring the power and potential of disability. While in the white cube gallery, the black box theater, or even the pages of academic journals we can now find lineages of thought and action centring disabled experience, when it comes to the on-the-ground practice of design we are kept firmly at the door, unless we can successfully pass as non-disabled. When we give in to this pressure to pass, we suffocate the richness and power of our full selves. And yet, often, to pass is to survive in a world not designed for us.
Despite all attempts to make it otherwise, the classroom remains a site of possibility. So much possibility that it gives me butterflies; the excitement of what I might come to know in that place, or, as equally, what I know that might be undone. This is mirrored by the knowing and unknowing of pain, of a body breaking down and building itself anew. Teaching design from a body in pain is to continually confront my internalized ableism and the ableism built into the systems around me. It is a constant reminder of the breadth of the un-nurtured knowledge in the room, and the potential we each hold for making and unmaking worlds.