• medical humanities
• disability
• paediatrics
• surgery

Cutting the human body, often that of a child, thus altering how it looks and functions is done in a multitude of different contexts but has since the 19th century become increasingly a medical domain. Access to proper techniques, tools and skills in order to not cause infection or other unwanted outcomes serves to justify the medical authority over cutting flesh, causing pain and modifying the body. However, the justification goes deeper than practical know-how: medicine, through its dominance as a knowledge culture, has seized power over the definition of the ‘whole’ and ‘complete’ body and hence over which measures are ‘indicated’ to achieve this state. In this essay, I attempt to show how some of the more recent scholarships in medical humanities point in a direction that might allow us to rethink these concepts and why it is crucial to do so.

In a recent and already widely cited appeal, Julia Kristeva and coauthors succinctly characterised the new wave of medical humanities as a ‘space for a bidirectional critical interrogation of both biomedicine (simplistic reductions of life to biology) and the humanities (simplistic reductions of suffering and health injustice to cultural relativism)’ (Kristeva et al 2018). Thus, calling for a radical break with both the nature–culture and science–humanities divides, they addressed the conceptual split between bios—the atemporal and acultural space of biological life—and zoe, the temporal and cultural sphere of human lives. Both the humanities and biomedicine have tended to incorporate this division in their understanding of health and illness, attempting to bridge, repair or translate across it. Instead, Kristeva and coauthors call for an understanding of the body and its associated states, practices and knowledge as biocultural. This goes beyond the recognition of biomedicine as culturally produced and biomedical truths as social constructs, to also acknowledge how culture is inscribed in bodies and that the humanities cannot disregard these embodiments.

Like many programmatic declarations in the field of medical humanities, Kristeva’s and her coauthor’s article invokes sickness, cure and healing. Their case study (of an anorectic young girl immersing herself into proviolent extremism), however, effectively exemplifies the deep entanglement of biocultural states and processes beyond the realm of disease. Their argument can be further developed through a closer look at other body practices not directly associated with illness, but with an ambiguous connection to both ‘culture’ and ‘nature’. Infant male circumcision and paediatric cochlear implants (CIs) are two such instances, and have each been the subject of vast scholarly debates on the distinctions between medicine and culture. Their salience is due to how they involve cutting into the bodies of non-consenting children, for reasons that are not connected with an immediate health crisis but rather to shape that body in a particular way. Hence, they differ in a significant way from many other incisions, such as appendectomies or hernia repairs, procedures that—although existing in a biocultural space—are not nearly as contentious due to their utility to preserve life and improve health.

Circumcision and CI on the other hand, are highly controversial practices. The permissibility of male infant circumcision has been up for debate with some regularity in different countries in the past decades, such as in 2006 in Finland, 2012 in Germany, and 2018 in Iceland and Denmark. These legislative efforts seem to prove one of the points made in 2004 by anthropologist Eric Silverman. In an extensive review paper about the anthropology of circumcision, he predicted that a new movement of aggressive anticircumcision advocacy, connected with men’s rights activism and more or less openly anti-Semitic, would be ‘fast moving to the center of legal, medical, and moral discourse’ (Silverman 2004). Silverman placed the anticircumcision or ‘prointact’ movement into a larger global as well as historical perspective on genital cutting, whether in a medical or other context. In his analysis, both the endorsement and vilification of genital cutting practices—not only discursively but including also the practice of circumcision as well as that of non-circumcision—are culturally meaningful. Genital cutting practices in different time periods and places carry a multitude of different meanings as, for instance, markers of group belonging, rites of passage, or—in the purportedly acultural sphere of Western medicine—insurer of moral and physical hygiene. Non-circumcision and its advocacy, however, as Silverman notes, carries as much cultural significance: the revulsion, condemnation and fear connected to it have served and continue to serve to emphasise the superiority of Western culture through pointing to the otherness, barbarism or inferiority of the circumcised.

However, in the circumcision debate, the competing cultural meanings of circumcision and non-circumcision are not addressed as such. Instead, the debate overwhelmingly revolves around circumcision as a cultural incision into an acultural body. In a harsh criticism of tolerance towards certain forms of genital cutting, rhetoric scholars Sarah Burgess and Stuart Murray argue that it is a violation of human rights when ‘the body of the child, or, to be more specific, his penis, is claimed by culture and reproduced in its image’ (Burgess and Murray 2015, 51). Burgess’ and Murray’s criticism is interesting, as it addresses a clear tendency in the contemporary circumcision debate: advocates on both sides tend to bring forth their claims in biomedical terms. Opponents bring forth evidence of the harmfulness of circumcision: the risk of complications, the associated pain, and the loss of the foreskin itself as a mutilation with detrimental effects on physical and emotional well-being. Proponents, on the other hand, present biomedical benefits from circumcision: studies that show a reduced risk of certain sexually transmitted diseases and cancers, as well as prevention of local infections and disorders of the urinary and genital organs. Along with what they interpret as low risks, these benefits lead them to argue that circumcision is at least an acceptable parental choice or to endorse routine infant circumcision. To Burgess and Murray, the argument of biomedical benefits or non-harmfulness of circumcision constitutes a colonisation of human rights by biomedical discourses. This is an important critique, as it addresses how invoking medical evidence serves to anchor the procedure firmly within the bounds of scientific rationality, a space to which it only came to belong very recently. Instead of a statistical numbers game of medical risks and benefits, they argue, it is the meaning-making properties of this practice that need to be addressed. However, instead of the ‘universal stasis and Platonic non-time of biomedical evidence’ (Kristeva et al 2018, 56), Burgess and Murray invoke ‘bodily integrity’ as a fundamental and universal human right, which is violated when children’s bodies are ‘claimed by culture’ in an unholy alliance of religious rite and biomedical truth claims. Failing to recognise that medicine, too, is not only culturally embedded but also in itself constitutes a culture that carries its own meaning-making, values, traditions and claims to power, medicine is in their analysis implicitly constructed as the antithesis to culture.

In defending a universal bodily integrity, Burgess and Murray do not address what body they are speaking of, and what the integrity of that body means. They appear to assume the presence of a naturally intact body in an atemporal state of health belonging to the realm of bios. The role of the cultural sphere, to them, is to defend the bios from cultural interference by means of human rights. Hence, they invoke a particular idea of physical wholeness. In his essay, Silverman points out the cultural contingency of the idea that proper ‘wholeness’ of the body is given in its unaltered state. In many contexts, he argues, the body is understood as being in need of certain modifications in order to be complete (Silverman 2004, 426). Silverman attaches the notion of a body that is ‘complete on birth’ to ‘Western sensibilities’ and the idea that the body might be in need of alterations to reach its proper wholeness to non-Western thought systems. However, both his reasoning and that of Burgess and Murray fail to account for the many modifications done more or less routinely to infants in a medical context.

Setting aside procedures that preserve life and prevent pain, we can find still many invasive procedures done in Western medical clinics in order to attain a completeness not thought to be present at birth. Corrective surgeries for unusual anatomies such as short stature or routine interventions such as orthodontic treatments reveal that the medical culture which infuses Western sensibilities in fact does not unquestioningly accept the body as complete at birth; certain bodies are considered complete and whole in this way, but many bodies are considered in need of surgical alteration to achieve proper wholeness.

One such instance is CI, a type of surgically implanted hearing aid, which consists of an inside part with an electrode coil permanently inserted to the inner ear—the cochlea—and an outside part which picks up and processes sound signals. Together with intense training throughout childhood, this device can enable children who are born deaf to understand and learn spoken language. In many countries, the vast majority of infants who are born deaf are now fitted with one or two CIs. The surgical procedure itself takes at least a couple of hours and is done under general anaesthesia. While the coil can be explanted, the procedure is not fully reversible as the cochlea as well as parts of the mastoid bone will be permanently damaged. The accompanying training and speech, rather than sign language-focused education that goes along with the procedure, are also ‘irreversible’ in the sense that they will determine the childhood and future of the implanted patient.

Since CIs came on the market in the 1990s, there has been significant controversy regarding them between physicians and hearing parents on one side and deaf activists and their allies on the other. This disagreement concerns the cultural view of deafness, which postulates that deaf people are a cultural minority defined primarily through their shared language. Competing with this view is the biomedical, majority view on deafness as a physical infirmity. In this latter view, the body of the deaf child is not complete at birth, and hence the CI does not represent a violation of bodily integrity. Rather than infringing on it, the surgery actually achieves physical intactness since it allows the body to mimic the functionality of a hearing person. From the perspective of deafness as a cultural trait, however, CI surgeries have been described as a practice akin to genocide as it threatens to eradicate the minority culture and language of deaf people.

Bioethicist Robert Sparrow has written one of the most interesting contributions to the debate on infant CI, in which he gives some validity to the claims put forward on both sides (Sparrow 2010). Sparrow recognises the core of the debate as a question of nature or culture, whether deafness constitutes a medical condition or a cultural identity. However, he goes on to show that underlying this distinction is an assumption that if deafness is a medical condition, a physical flaw, then it would be justified or even imperative to attempt to repair it. Seeing deafness as an embodied cultural identity, however, makes the attempt to solve the disadvantages associated with it deeply problematic—like solving discrimination towards an ethnic minority by eradicating the physical traits that distinguish them from the majority. Where both positions come together, again, is in the dichotomy between nature and culture. Proponents of the CI justify it through references to ‘normal species functioning’, recalling the imagined acultural, atemporal state of health and body of the bios. Opponents, on the other hand, reject this notion and any division between normal and abnormal capacities as rooted in societal power structures. Hence, the conflict revolves not as much around the implant itself as around where to locate deafness: nature or culture? It is the idea that a decision in favour of either nature or culture would automatically resolve the issue that Sparrow challenges. While he agrees that it might be possible to define the ‘normal’ body, one that is admittedly an abstraction but thinkable as a purely biological, acultural fact, this body would in his opinion need to remain in that acultural sphere. It is, Sparrow argues, not morally valid as a concept since it still remains unclear that an organic dysfunction would justify interventions that ‘merely’ sociocultural disadvantages do not. In this way, however, Sparrow himself also upholds the division between the bios and zoe, in claiming that the normal species functioning is purely biological, acultural and hence amoral. Recognising the entanglement of the biological and the social, the medical and the cultural means recognising that the normal species functioning is already essentially moral at its core. This does not mean denial of the biomedical aspects of deafness, but viewing the body as, in Kristeva’s and her coauthors’ words, ‘a complex biocultural fact’ (Kristeva et al 2018, 56).

Echoing the principles that anticircumcision activists invoke, it is clear that CI surgery involves removing healthy tissue from an infant and involves risks of complications (in fact, by all accounts much higher than those of circumcision). In this case, however, not hearing and using sign language are pathologised, which obscures the social and cultural motivations behind the procedure. Suspending this notion, circumcision and CIs can both be characterised as practices that surgically alter children’s bodies to attain ‘proper wholeness’ according to particular cultural values. Parents seeking cochlear implantation for their children do so in order to secure their belonging in a particular cultural community, that of hearing and speaking people. Parents who opt for circumcision do so for the same reason: to secure belonging to a cultural group. What sets the procedures apart as practices is instead the significance of the individual body: whereas an individual ‘fault’ in the body needs to be determined in order to qualify for a CI, routine circumcision is rooted in collective values that prescribe an intervention regardless of individual anatomy. Both of them, however, construct particular bodies as in need of alterations to reach their complete state.

Viewing the debates on CI and circumcision together reveals the construction of a certain kind of body as ‘natural’ and the desire to defend that body against ‘cultural’ interventions while welcoming supposedly acultural ‘medical’ interventions on other bodies. In much of the scholarship in medical humanities and medical ethics on these topics, this implicit nature/culture divide and view on medicine as separate from culture are also evident. Debates over surgical interventions to shape and alter the body have fallen prey to medical interpretations of the body as an acultural, biological entity and of medical practice as devoid of cultural meaning. Even in discussions about what they recognise as culturally motivated practices, scholars attempt to achieve clarity through omitting symbolic meanings and focusing on what they perceive as acultural medical data.

There is immense potential for the new wave of medical humanities to do important work here, in particular regarding a critique of the notion of the ‘whole’ or ‘intact’ body and the power invested in those notions. In this way, we might, in the end, not come to different conclusions on the permissibility of genital cutting or on normalising interventions in disabled children. Crucially, however, it will open up the door to a more complex view on central analytical tools and concepts, in particular, such concepts that derive from medicine, such as ‘indication’ and ‘intactness’. The role of the medical humanities is to critically engage with the medical power invested in such fundamental notions.