Cyborg Realities / Cyborg Imaginaries / Cyborg Revolutions /

Cyborg Imaginary: Wheelchairs as Aesthetic Expression

One of the biggest problems I have is that everything disability-related feels geriatric. It's the aesthetics that they put on everything medical to make that shit old. And I'm like, why do you assume everybody is sixty years old? You know, there are millions of people under the age of forty who wanna look fly as shit. And why do we think that eighty-year-olds wanna look like that?

D’Arcee is a Black queer man with cerebral palsy and a manual wheelchair user. He is also an artist of soundscapes and speculative literature who has a deep appreciation for Afrofuturist aesthetics. It took him until he was twenty-six to get a wheelchair he was comfortable in, and he had to pay for it out of pocket on the secondhand market. He wishes he could bring his fashion sense to his wheels. At the CoLiberation Lab, students have been inspired by D’Arcee’s story to explore, through physical and digital prototyping, modular chair designs that combine form and function to support the aesthetic expression of chair users. We are trying to imagine a world in which “Billy Porter, but make it wheelchairs” is possible beyond the red carpet and can be a part of everyday street presence. Alongside this ideation, we’ve been slowly building installations for a forthcoming immersive exhibition on disabled futures.

D’Arcee’s installation features a wire-wrapped cast of him striking a pose in his wheelchair as he gracefully ascends a sloped runway. His wheelchair features custom hubcaps with metalwork and inlaid lights. There is a cape affixed to the back of the chair, building on the concept of the wheelchair as a part of, rather than an obstacle to, aesthetic expression. D’Arcee’s clothing defies gender, and his boots are deliberately “impractical” as he has no intention of walking in them anyway. Velvet drapes and neon lighting set the stage, which has an array of alternative hubcaps lining the rear wall like a custom closet. Visitors will be invited to sit and contemplate the arrangement as colorful lights and projections dance across the scene.

Cyborg Realities

In the summer of 2022, I was awarded a Just Tech Fellowship from the Social Science Research Council. As one of six fellows, I was given the resources and support to investigate the barriers faced by disabled people who need adaptive and assistive technologies in their daily lives. Disability is a fluid and often contested category, but for my purposes, it always means anyone disenfranchised from self-determination by the ways in which society has condemned their bodies and minds as unworthy of public life.

Over the next two years, I interviewed disabled technology users, disability and technology policy advocates, and technology service providers about their experiences with acquiring, maintaining, and modifying adaptive equipment and assistive technologies. Such technology includes somewhat obvious equipment, such as wheelchairs, rollators, crutches, and prosthetics, as well as the less recognized screen readers, tablets for communication,¹ and specialized computer input devices. What “counts” as adaptive and assistive versus what is experienced, needed, and desired is often not in alignment.

These interviews confirmed some of my suspicions and fears — namely, that disabled people are denied the right to bodily autonomy through denial of access to the technologies they need and desire. These denials are multidirectional and multidimensional, from biased physicians refusing diagnosis or withholding prescriptions to opaque and discriminatory insurance determinations, inaccurate needs assessments, and inadequate disability technology policy, which conspire and entangle to delay or refuse access. Even when a person manages to acquire the tech they want, they then face barriers to maintenance or customization, leading to loss of hard-won devices. For mobility equipment and prosthetics, many people lose access simply because their bodies change — they gain or lose weight, they grow up. For other kinds of technology, especially if heavily reliant on software or proprietary parts, disabled people can lose access overnight if a company goes out of business or merges with an entity that changes their priorities.²

These interviews also taught me something important, beautiful, and magical: despite all this obstruction, disabled people build their own sociotechnical configurations. Even against systems designed to fail disabled people, we still become cyborgs.

Cyborg Reality: Cyborg Maintenance Workshop for Custom AT Hacking

More than once, I’ve found myself on the floor of a hardware store, with duct tape in one hand and a screwdriver in the other, aggressively wrangling a dysfunctional hinge into some semblance of stability. If a screw goes out, I can be trapped if I’m far from home and don’t have other equipment on hand. It can take weeks to get into the prosthetist for repairs. Hardware store guys are surprisingly chill and eager to help.

Ashley is a white amputee and cancer survivor. She has had a rotationplasty (a specific kind of amputation), in which a cancerous bone near her knee was removed and her ankle reattached backwards to act as a new knee within a prosthetic leg. Usually, when amputees go to a prosthetist for fittings and adjustments, the process is very clinical. Ashley has found a prosthetist whose clinic is much more like a workshop. It’s a bit like going to the mechanic, except it’s your body and not your car. Many participants described being unable to use certain equipment because there wasn’t really a model for adjustment and fitting, as there is in prosthetic sockets. With Ashley, we are exploring the idea of the workshop extending to every aspect of AT procurement, maintenance, and modification.

This installation features four wire-wrapped figures. Three are amputees who are engaged in conversation together. They are perhaps discussing their favorite socket liners. At the back, seated at a cluttered workbench surrounded by test sockets, hardware, and tools, a tinkerer-prosthetist makes custom adjustments to one of the clients’ prosthetic legs. At a table placed between the viewer and the figures, attendees are invited to tinker and touch the materials of socket building, and experience the odd satisfaction of digging through a bucket of feet and finding a hinge — a kind of Cyborg Mr. Potato Head.

Disabled Cyborgs

When most scholars read the word “cyborg,” they think of Donna Haraway’s “Manifesto for Cyborgs,” in which the cyborg is described as “a cybernetic organism, a hybrid of machine and organism, a creature of social reality as well as a creature of fiction.”³ For Haraway, the concept of an organism-machine hybrid is a useful symbol for social and cultural analysis.

Cyborg Jillian Weisse contests Haraway’s metaphorical and posthuman cyborg, favoring the practical and the lived: “Disabled people who use tech to live are cyborgs. Our lives are not metaphors.”⁴ In other work, I have expanded on Cy’s writing, stating, “Cyborgs are those of us whose life and cognition are reliant [on]… the existence of an interface between flesh and technology.”⁵ In disabled cyborg theory, the definitions of interface and technology are expansive enough to include anything that sustains disabled life and enables disabled thought, speech, and action in the world.⁶ It is this disabled cyborg that dominates my sociotechnical analytic frame.

It is important to me that readers do not confuse the disabled cyborg with posthumanist or transhumanist traditions. Posthumanism is laden with racist and ableist drives to transcend humanity without attending to the material realities of those human beings who have yet to be recognized as fully human.⁷ Scholars often neglect to acknowledge the explicitly eugenicist tones of transhumanism, with its drive to transcend human “defects” through improvement and modification of the human body. While transhumanists seek a super-human existence, disabled cyborgs simply seek existence. In the face of a world that would rather you disappear, that seeking requires imagination.

Cyborg Imaginary: “Apothecary,” a Community Space for Accessing Diverse Medications

Because of the constant scrutiny and pressure of the DEA, my ability to access the medications I am prescribed is in constant flux and peril… And nobody will turn off the lights for me or use quieter voices for me. And everyone wants to have a say in whether I can have medication to manage the pain that they put me in. They say my disabilities are invisible because they want me to disappear. But I make art to leave my mark in beautiful, spiteful ways. I will not disappear.

The wire figure of Rachel is poised on a stool, her cane draped across her lap. She wears a wide-brim hat and dark sunglasses. Beside her is a mannequin stuffed with herbs and tinctures, and the placement of these items communicates to visitors what parts of the body and what physiological systems the herbs are meant to support. Medicinal plants and materials are tied to poles, set in pots, and line the shelves and drawers. Everything is labeled with a list of known interactions with other herbs and pharmaceuticals. The installation sits under a pergola lined with garden lights. A circular rug invites the viewer in to receive guidance and information and commiserate with the apothecarist.

Many of the interviewees discussed difficulty accessing medication. There were strong overlaps in the experiences of chronic migraineurs, people with endocrine conditions, and trans people. Our discussion explored the complicated space of medicine and the fuzzy borderland between Indigenous, ancestral, alternative, underground, and emerging medicines that fluctuate in acceptability based on legitimization from the medical field, which is often culturally contingent. With this project, we are reimagining the pharmacy and returning to the apothecary, not as a rejection of modern medicine but as a reparative reintegration of a plurality of medicinal knowledges.

Cyborg Imaginaries

The disabled cyborgs I interviewed had all experienced disbelief, dismissal, and denial of their disabilities, their pain, their needs, and their desires. They had also experienced obstruction and destruction of their access to technologies that might alleviate those pains, facilitate their actions in the world, and bring them access to public life. Whatever the system of negation, they persisted, fought, subverted, evaded, and countered these refusals — sometimes winning out over the system, sometimes building their own solutions, and always charting a third way toward bodily autonomy, community, and cyborg life.

Five of the cyborgs I interviewed participated in co-design sessions to imagine how their story might inspire sociotechnical systems in this third-way space. We convened over video or asynchronously over email exchanges, as different disabilities entailed different configurations for collaboration. Each session was tailored to explore the experiences described in their interviews. For example, with Ashley, we traversed her “Table O’Legs,” where all of her prosthetic components are lined up. We discussed how some are in regular use, some are emergency backups, and others are damaged. All of them are branded, “but we aren’t customers.” With Samar, we went deep into the concept of disability doulaship and ensoulment that came up in our interview. We explored what a disability doula’s altar might look like, drew tarot cards together, and reflected on their possible readings.

Eventually, I would name the project “Cyborg Imaginaries.” As I begin the sometimes tedious work of scientific dissemination, I also work with students in my lab to produce artistic expressions for public dissemination. We are building immersive art installations as part of an exhibition where five unique designs of disabled cyborg life can be illustrated in life-sized scale for others to experience, reflect on, and chart new paths for together. These interactions generated the stories, sketches, and installations featured in this piece.

Cyborg Imaginary: An Altar for Disability Doulaship, Community, Care, Connection, and Healing

I want to be a part of building a better society. So much of what we go through comes down to other people thinking they need to control how your body exists in space. I could build the best system that works for me, but that doesn’t help my siblings. I want a world we can build together, where people don’t feel so consumed by fear that they want to diminish others, where everyone can breathe and be free.

This installation is based on an interview and ideation with Samar Jade, a Black trans disabled poet, creator, and care worker living in Louisville, Kentucky. People are invited to rest and experience the figure (a wire-wrapped cast of Samar’s body decorated with stones and charms). On the altar between them is a tarot reading Samar pulled for this exhibit. Visitors are invited to write their worries on a slip of paper and deposit them in the basket on the left, which emits a simulated fire to represent the cleansing of fear. The basket on the right contains copies of the “Threefold Divergentine Blessing,” which Samar and I wrote together. Arranged on the shelves behind the figure are artifacts of Samar’s ritualistic spiritual practice, which blends Christianity, hoodoo, and occult elements.

Samar Jade is a disabled queer Black femme who is deeply invested in recovering ancestral forms of spirituality, healing, and community relation. With this project, we want to explore how personal spiritual practices provide spaces for self- and community-care that are particular to disability, queerness, and Blackness as a political and spiritual orientation. One of my major hopes for this project is to illustrate and affirm that though there are many policy changes we can push for, we can’t rely on the state alone to provide — we have to change our hearts and our souls as well.

Cyborg Revolution: A Cyborg Maintenance Consultant

I spent a lot of time researching AT for other people, and I would often find things and think, “obviously people like me don't need these things.” Every single time, I was looking at something I needed but I didn’t believe I was allowed to have because of the way the information was structured – it always feels like it’s not for you. And that pattern happened repeatedly. I could find information about what kinds of devices were out there, but I couldn't find the idea that these devices were for someone like me.

Tuttle is a white autistic person who uses AAC to communicate and often needs adaptive equipment to support their physical mobility and comfort. In our discussion, we reflected on how much personal and communal knowledge is necessary to navigate the opaque and hostile medical system, which gatekeeps access to AT and medicine. With this project, we are exploring new kinds of social roles that can emerge in parallel with existing social systems, while still pointing us toward alternative social configurations.

The cyborg maintenance consultant is surrounded by second-hand adaptive equipment and technology. They use a custom array of adaptive internet technologies to collate the required information to support their clients in acquiring the equipment they need. On the screens behind them, the consultant has arranged flowcharts for three clients that show their progression through medical, charity, and second-hand processes for finding and funding the technology they desire. The viewer is invited to sit at the consultant’s desk, look upon the collection of possibilities, and imagine the crushing fear of navigating these labyrinthine policies alone.

Cyborg Revolutions

The tech developers I interviewed expressed a resigned and persistent frustration that the solutions they wanted to build to give disabled people better (often safer!) options, more choice, more control, and more agency were often blocked by obscure and antagonistic policies designed to keep the technologies disabled people needed tied to insurance models that drive up costs and depend on bottleneck companies embedded within the medical-industrial complex. The policy makers I interviewed recognized the inadequacy and sometimes brokenness of our current systems, but expressed fear that these systems, as imperfect as they were, were so hard fought for that to criticize them was to risk them being taken away.

Now, it’s all under threat anyway. A eugenicist, totalitarian regime committed to the projects of capitalist empire, genocide, racism, and ableism has targeted healthcare, education, and science through the dismantling of Medicaid, the Individuals with Disabilities Education Act (IDEA), Section 504 of the Rehabilitation Act, draconian cuts to research funding and academic freedom, attacks on medications that keep disabled people alive, and naming autistic children as a “dire threat to the American people and our way of life.”⁸ The violence goes on and on.

But disabled cyborgs have always built their bodies and communities in the absence of these systems. These systems never served us without resistance. This isn’t to say we should just let these imperfect systems perish — but while we fight to maintain and recover and rebuild, we must also build parallel strands, preparing for a future worth weaving together.