Keywords

“The cyborg is the engineer’s dream. The engineer steers and manipulates the human to greater performance. As a common cyborg, I subvert that dream. I do not want to sell any of their shit for them. I am not impressed with their tech, which they call 3C98-3, and which I am wearing, a leg that whirs and clicks, a socket that will not fit unless I stay in the weight range of 100–105 pounds… The last one they gave me was a lemon. Maybe this feeling of trial-and-error, repetition and glitch, is part of the cyborg condition and, by extension, the disabled condition.

- Jillian Weise, “Common Cyborg”

What is it like to be – to maintain and remain – a cyborg? In this paper I look at design and the lived experience of the cyborg bodymindFootnote 1 in order to contrast it with the expectations of those who most want to become cyborg. The theme of cyborg maintenance sits in opposition to simple and tidy futuristic visions. While every “what is it like” is unique and ultimately unknowable to others [27, 41], we need only listen to current cyborgs [28, 39, 40] to understand that the future cyborg imagined by engineers and transhumanists fails to appreciate the cyborg lived experience. In this paper, I investigate what it’s like to inhabit (and continue to inhabit) a cyborg bodymind. I do this as well as a non-cyborg can. While I do rely on technology, just as everyone else does – I am lost (literally and figuratively) without my cell phone, I require clothing and housing and a car to live the life I do – I need no technological assistance which is implanted into, or strapped onto my body in the same way that someone with a pacemaker, or a prosthetic limb or wheelchair does. I don’t even wear corrective lenses to see, though I expect that will be changing sooner rather than later.

There are different notions of what a cyborg is. Donna Haraway saw the cyborg as an ironic political myth that had no truck with patriarchy, binaries, boundaries, or beginnings [17]. Andy Clark maintains that we are all cyborgs and always have been, that one cannot be human without an intimate relationship with technology [6]. I have a fondness for both definitions as they appreciate the different ways in which we are entangled with the things we make, our social structures, and extensions of our will and ideation [10]. A lot of my work revolves around the notion that we are diffractively inseparable from our material-semiotic contexts, from our technology, and that we become different things in each of these contexts [2]. But, because we are (ontologically, epistemologically, and axiologically) different as contexts change, the context of being a cyborg has relevant situational nuances as well. As such, I take on a narrower definition of cyborg that Ashley Shew has expressed to me in conversation, and that is implicit in her work, as well as the work of Weise [39, 40], Garland-Thomson [15], and Johnson [20]. In this definition, a cyborg is one who needs an intimate connection to a technological artifact in order to go about normal, everyday, actions. These actions can be as mundane as moving between rooms, sleeping comfortably, or even breathing. The artifacts required must be either within the body, strapped to it, or carrying the body in some way. The function of the body itself, not just the body in social context, must be significantly affected by the technological artifact’s presence or absence. The technological artifacts must become a part of the infrastructure of the cyborg bodymind. They disappear when working well, and become much more legible,Footnote 2 phenomenologically, upon breakdown [37].

Thus I turn to disabled bodies, the bodies with ports and stents, with artificial knees and valves, on prosthetics and upon wheelchairs, on crutches and canes and walkers. I look at how they move through the world, and how the world pushes back. I consider how bodies and technologies are maintained, both separately and together, and how that maintenance is ignored by other, relevant groups who dream of cyborgs to come without acknowledging the cyborgs that are [39]. Capitalism, and an individualist bootstrappy society, further marginalizes the disabled cyborg body. I end with a call for greater acknowledgment of our inter- and intra-dependence, and a shift toward care rather than production and individual determination as guiding principles in our cyborg diffractions.

This project was inspired after being regaled with tales from my PhD advisor of her weeks-long adventure to fix a squeaky leg. These tales revealed the lengths to which one must go just to be able to live with a prosthetic leg. Multiple 5-8-h car trips to two different prosthetists in two different States. An appearance at an academic conference was cancelled. Who knows how much family disruption this caused, nevermind having to deal with an incessant squeak following one around, or how much money the entire saga cost (even with decent insurance). This tale, combined with the work done by another colleague of mine, historian of technology Vinsel [32], on maintenance and critiquing narratives of innovation, made me realize that the two issues – maintenance and disability – were not separate. They were of a piece. We maintain our bodies in much the same way we maintain our streets, via projects large and small. Central to maintenance, both toward our bodyminds and toward our infrastructure and technology, is care.

Maintenance is the epitome of care. Designing products in such a way that they can be easily maintained is an important part of such care. We become intimately familiar with the object or body for which we care and on which we perform maintenance. Our hands become covered in the viscera and excreta of the body, technological or biological, on which we work. We become emotionally attached to that which we maintain, and we value that which we maintain over the new or the innovative. We become attuned to the smells and sounds and looks of the bodies we maintain, we understand when they are wearing, when they are unhealthy, when they need more care, or less. To maintain a body is to be in an intimate relationship with it. The more maintenance is required, the more intimacy is also. This is true of objects and bodies both, one’s own and another’s. Maintenance, both of bodies and of things, constitutes most of human life with them [12, 32].

Because we have traditionally split care from maintenance – the first upkeep of biological subjects, the second upkeep of inanimate or technological objects – the parallels between the two aren’t often discussed in the same breath. We socially coded maintenance and care differently, too. Maintenance is generally coded as a masculine pursuit. Your local auto mechanic, your plumber, your handyman,Footnote 3 your highway worker. These codes are not, of course, set in stone. You can often find one or two women on a construction site (rarely more than that). My own mother is a master plumber and flips houses as a hobby. My mother also said that she was one of only two women (out of hundreds) at her master plumber certification classes. Care, on the other hand is generally coded feminine. Care is ongoing, done in negotiation with a patient, client, or family member, by someone who understands that fragility is a part of life, and someone who refuses to give up on anyone [26]. Nurses, midwives, doulas (for birth and death) [29], secretaries, cleaning services, and more fall under the umbrella of care work, and all are generally populated by women.

Both care and maintenance are culturally stigmatized for similar and dissimilar reasons. The first, which they share, is that the work is dirty. The physical taint of this work becomes social, and sometimes moral, taint [1, 9, 34, 36]. The second, which they also share, is that we consider the work to be for those of a lower socioeconomic class, those with less skill, or those with little to no official education. Care and maintenance are often described as “unskilled labor,” even though nothing could be further from the truth. The “unskilled” label attempts to place maintenance and care work in the same socioeconomic category as retail, fast-food, and other parts of the service economy. Care and maintenance work doesn’t pay as well as (some) other work, even in similar fields. Nurses, for instance, get paid far less than their doctor counterparts, regardless of their import to the health of patients or the amount of work that they do.

The sorts of embodied skills that care and maintenance require are broadly underappreciated in our socioeconomic system. Engineers who design things with CAD programs and via equations and drawings may look down on “makers” and “tinkers” who do exactly the same thing, but with hands and welding torches. Makers and tinkers are excluded from the category of engineer because they eschew the computerized or theorized way of doing business in favor of getting dirty. This gatekeeping may also be one reason that things are not often designed to be maintained, but rather force maintainers, makers, and tinkers to improvise and “hack” (i.e. get around the official design) the object in order to make it do what is needed. Tech companies actually resist any notion of making their products repairable, preferring forced obsolescence and a discard-and-buy-new society. Apple recently bemoaned that it spent billions of dollars more than expected on repairing iPhones, and many tech companies are spending millions on lobbying efforts to block right-to-repair bills in the European Union and the United States [4, 24].

Similarly, physically and emotionally caring for a person is substantively and phenomenologically different from diagnosing via charts or even repairing via surgery. In the former instance, one must engage on a personal level, touch more intimately; hear, smell, and taste more. These intimacies produce connections, understandings, and emotional closeness that is absent in the more cerebral and detached modes of inquiry. Care, in its ideal, requires you to love the person for whom you are caring.Footnote 4 Love is difficult… and stigmatized. Affection is considered a feminine pursuit, and is devalued broadly in our society. Men are often not given (or not allowed to obtain) the sorts of emotional tools which would allow them to step more easily into these care positions [5, 16]. Men are not taught how to love outside of romance and familial contexts. Society tells men (particularly straight and cisgender men) that the love of friendship and the love of a care relationship should be foreign, frightening, and avoided: this is one facet of toxic masculinity [25].

At the other end of the relationship, dependency is also stigmatized as weakness and lack of value. When someone is in need of care, particularly if that need is ongoing, they become “moochers,” “drains on our system,” and part of the “welfare state,” all said in sneering tones as if those who get categorized as such ought to just die. The echoes of the eugenic era rings in these narratives, and the valuation of people as capital production units reinforces this view. If only those who needed care could just bootstrap themselves into productivity wouldn’t we all be better off? So, when we look at cyborgs – disabled people who need care and maintenance, who care for their own bodies, and maintain the technological infrastructure within and around their body – we end up with multiply-marginalized people. Marginalized for the care they require. Marginalized for the care they (must) give themselves. Marginalized for the dirty work of maintaining a cyborg bodymind. Marginalized for loving the disabled bodymind they inhabit. Marginalized for failing to be as productive a citizen as is considered proper. Marginalized even for fighting against stigmas and exclusions.

But the cyborg must not just maintain their bodymind (as we all do to one extent or another), they must also maintain the technological infrastructure which produces their cyborg-y-ness.Footnote 5 They must maintain their prosthetics, their wheelchair, their ports and stents, pacemakers and artificial valves. Each of these technologies experiences wear and tear. They bend and break and need to be bent back and put together, soldered, duct taped, super-glued, and sometimes discarded. They get dirty and need to be cleaned. Ports require flushing, artificial valves and joints require medication to avoid rejection and maintain functionality. Pacemakers require digital updates and replacement batteries.

Much of this labor of repair is done by the user, which probably has a family resemblance to the repair that a handy do-it-yourselfer might make on their house, property, or automobile. But the cyborg’s expertise is gained through the necessity of their embodied situation rather than any hobbyist or professional interest (though they may have such interests as well, of course). A handy homeowner will not be prevented from going to work or out in the world if they put off replacing a missing bit of trim, but the same cannot be said for the cyborg who forgets to charge their electric wheelchair, or who fails to properly lubricate joints or sew frayed straps on their prosthetic. One must also have a suite of alternate modes of mobility for when one can’t or won’t use one’s primary cyborg part. Crutches (forearm, always), walkers/rollators, wheelchairs, shower seats and grabby-arms, and all sorts of accoutrement which makes those secondary technologies work as well. Designing these technologies to be easily repaired, particularly by those who will be their most common users (i.e. not requiring individuals to travel a long way or spend a ton of money on specialist repair), should be a first-order consideration of engineers and designers.

For the maintenance that a cyborg cannot do themselves, a vast network of technicians and medical/engineering infrastructure is required. This network is often expensive to access and not available locally, requiring significant travel and the costs associated thereof. My PhD advisor, as I mentioned earlier, had to travel to multiple States just to fix a squeak. Because these are considered medical devices, one also needs a prescription in order to get a new one (this includes wheelchairs, strangely), and it may or may not be covered by one’s medical insurance. Cost and insurance are not minor issues. Many disabled people, due to society’s focus on capital and productivity, fall below median income levels, and are generally twice as likely to live in poverty as the nondisabled population [8, 21]. Prosthetic legsFootnote 6 range from $5000 for basic models, to well over $50,000 for ones with complex, computerized knees and ankles. Wheelchairs also have wide ranges in cost, from around $100-$800 for a manual, hospital-style wheelchair to many thousands for a custom manual chair or powered chair. With wheelchairs, of course, comes the requirement to install ramps in the home, install lifts into vehicles (or purchase vehicles with them), and rigs to get into and out of bed for those with more severe mobility limitations. All of this is expensive and needs maintenance, cleaning, and care.

Once one goes out into the world, one comes up against broken sidewalks, curbs, stairs, heavy doors, and other hostile architecture that makes it clear that the disabled are not welcome [28, 30]. These architectural barriers, in addition to the attitudinal barriers that cyborgs face, produce a being-in-the-world that is different from the nondisabled and the non-cyborg. These material-semiotic contexts necessarily alter the phenomenological experience of moving through the world. We learn and re-learn our embodied contexts throughout life, beginning from a young age [43]. Riffing on Merleau-Ponty, Vivian Sobchak describes the long process of getting to once again ‘look where the goal is’ and [then get her] ‘bodily machine [to do] what must be done for me to get there’ in an invisible, unthinking manner [35]. Cyborg existence and experience and movement can be beautiful, pleasurable, and even musical [17, 20, 28]. These existences, experiences, and movements are transmobileFootnote 7 and multistable [18, 30], and they are affectively different from the nondisabled way of being-in-the-world.

These contexts and barriers are factors not taken into account by the engineers who build our cyborg presents and futures, nor the transhumanists who want to take on a cyborg bodymind. Zoltan Istvan, former president of the Transhumanist Political Party and popular transhumanist author wrote about how since exoskeletons were going to be available soon, we shouldn’t bother fixing sidewalks (19, see also in response: 13, 23, 33). Istvan’s article ignores how difficult walking on a broken sidewalk in an exoskeleton might be, or the notion that those exoskeletons themselves might need repair and upkeep, and that broken sidewalks might exacerbate that need. Also, traveling on broken sidewalks is unpleasant for anyone, not just those in wheelchairs. Failing to maintain our worldly infrastructure simply shifts the onus of maintenance onto individuals who now have to repair broken bicycles, wheelchairs, ankles, and even exoskeletons.

Transhumanists tend to describe cyborg technologies in the same terms as we do our cell phones, that the tech would be replaced upon obsolescence [6, 22] instead of repaired.Footnote 8 They also tend toward a very masculine, neoliberal, individualist ethic, which requires them to avoid any grouping of people into groups or demographics [11, 38]. These two beliefs come together to make nearly impossible to consider cyborg maintenanceFootnote 9 as a part of cyborg being. As Transhumanists also want to end disability [3, 19], they tend to see the disabled body as broken, an object to be fixed, and the person as someone who should only ever be grateful for the interventions, not someone with whom to have an equal and collaborative relationship. By not engaging with cyborgs before producing the technology it is assumed cyborgs want, technologists risk not only producing a technology that will not be taken up, but that the lived experience of the cyborg remains invisible and unexamined. A cyborg could tell a technologist how to build a leg that’s easier to maintain, that has the features they want, and that produces a better phenomenological lived experience. Care also runs counter to a lot of transhumanist ethos, since care requires a generous acceptance of interdependence, a dedication to shared values, and a belief in the validity and dignity of the disabled body.

So long as transhumanists and engineers fail to engage with the cyborg bodies that currently exist, or those people who most reasonably may become cyborg soon – in every phase of production, from planning to distribution – they will never produce the kind of cyborg future that they claim to want. Also, so long as transhumanists continue to ignore maintenance and care, advocating instead for a bootstrappy, individualist concept of responsibility, networks and communities which make a cyborg future worth wanting will be limited and insufficient. I end here with a call to transhumanists, engineers, and the rest of us, to take seriously the notion of care and cyborg maintenance. These concepts will help produce a more connected cyborg future, where our architectural context is welcoming of cyborg bodies, and where a wide variety of cyborg (and non-cyborg) bodyminds are valued and share in the pleasures and pains of lives worth living.