Boundary work across the nature-culture divide
Aspects ot our approach are related to the so-called ‘second wave’ of the medical humanities (often referred to as ‘critical medical humanities’). Fully in line with this critical agenda, we intend to go beyond the three Es that have been seen as characteristic of the first wave: ‘ethics,’ ‘education,’ and ‘experience,’ to emphasise a fourth E, namely ‘entanglement.’ Medical humanities, as researchers ot the ‘second wave’ and we understand it, are “deeply and irretrievably entangled in the vital, corporeal and physiological commitments of biomedicine” (Fitzgerald and Callard 2016: 35—6). In contrast to the ‘second wave,’ however, we also insist that tackling this entanglement requires more than the mere application of perspectives from the humanities on medicine and health care with the aim of fostering more “holistic understandings ot the interaction between health, illness and disease” (Hurwitz and Dakin 2009).
The lesson we should learn from Cura is that the humanities, as much as the sciences, are a consequence ot the nature—culture divide. The humanities are themselves a product of epistemological and ontological divisions that underpin the current organisation ot knowledge, and in this epistemic apparatus they are inscribed on the cultural side of the nature—culture divide. Hence, neither biomedicine nor the humanities can offer ‘wholeness’ (as ‘romantic’ and/or holistic notions of medical humanities often assume they can). Accordingly, we do not consider the humanities as a critical and potentially liberating perspective that can be applied to medicine as an object in need of repairment. Medical humanities should not be construed as a humanistic perspective on medicine. They should rather he seen as a cross-disciplinary and cross- cultural space for translation and bidirectional critical interrogation of medicine and the humanities across the nature—culture divide. On the one hand, this implies breaking with the culture—nature dichotomy and considering both the humanities and medicine as bio-cultural practices. On the other hand, it also implies understanding that boundary work requires boundaries, and that incommensurability between various partial disciplinary perspectives can, will, and should emerge. Such a bidirectional and translational approach to the medical humanities suggests that the humanities are not only to be considered as a kind of meta-knowledge representing a critical or communicative ‘add-on’ to the ‘pure’ biomedical knowledge that is believed to concern and intervene in health issues ‘more directly’ at a ‘basic’ biomedical level. The humanities also address ‘hard factors’ behind sickness and healing. This does not imply that biomedical approaches should be reduced to social or cultural factors considering culture as the real and ‘hidden’ reason behind the ‘construction’ ot biomedical facts. Rather, cultural aspects of health and illness can never be clearly separated from, and are always intimately intermingled with, their biological ‘other.’ (A simple case in point is how human living interferes with biological life by provoking resistance against antibiotics or by influencing the spread of malaria and other mosquito-borne diseases through the growth of human settlements.)
What we should maintain from the outset, however, is that biomedicine is not only culturally produced, but that the humanities are also materially productive; they create bodies and physical conditions. Like Cura in Hyginus’ tale, cultures create different kinds of bodies and realities with medical implications: cultural discontent can produce pathologies, but increased understanding and analysis of the body as a complex bio-cultural tact can also be a potential source of healing.
The healing powers of translation: the case of Souad
Over the last three years, Kristeva and Moro have explored the pathological and healing powers of culture through their seminar on the ‘Need to Believe’ aimed at various professionals in the health sector who deal with cross-cultural discontent among adolescents. This seminar explores how health professionals should deal with the ‘ideality disorder’ of adolescents that follows from an absolute and unsatisfied need for an assimilative investment in an ideal otherness. Our secularised society' offers no rites of initiation for these youngsters and they are therefore exposed to ‘a traumatic symbolic void’ with potential pathological implications.
In Interpreter le mal radical, Kristeva (2016) refers to the case of Souad, a teenage girl from a Muslim family who suffered from severe anorexia, “a slow suicide addressed to her family and to the world” that subsequently metamorphosed into radicalisation:
Souad walled herself up in silence and didn’t get oft the internet where, with her unknown accomplices, she exchanged furious emails against her family of ‘apostates, worse than unbelievers,’ and prepared her voyage ‘over there,’ in order to become the mistress of polygamous combatants, the mother of prolific martyrs or a kamikaze herself.
Souad was at first reticent about psychotherapy, but when confronted with the multicultural psychotherapeutic team, her attitude gradually changed. She started to find pleasure in narrating her life and in expressing her destructive urges and sufferings. Thus, she gradually began to reconnect with the French language. Together with other teenagers supported by the team, she started to attend writing and theatre workshops and to read Arabic poetry translated into French. The translations of the Arabic texts constituted a kind of‘third space’ or an ‘in-betweenness’ in the encounter between the two cultures from which new and hybrid meanings arose. Language, theatre, and poetry now began to fill the ‘symbolic void’ and undid the nihilism. Roland Barthes (1989) wrote that if you find meaning in the plenitude of a language, “the divine vacuum can no longer threaten.” In the case of Souad, her new cultural, symbolic, and linguistic attachments represented a lot more than a soft cultural supplement to her biomedical treatment. Fler reinvestment in “the plenitude of a language” became a major creative and healing agency. Through the use and sharing of meaning and the pleasures of language, through conversation, theatre, and poetry, Souad started to re-establish ties to the world and to her own body. Hence, a process of creativity and healing was initiated that encompassed both body and soul.
Towards a translational medical humanities
To further develop and instantiate the reflections above, we are launching a global ‘think-tank’ on medical humanities where we will invite medical researchers and professionals, humanists, and social scientists to participate. The following fundamental issues will be discussed:
- 1 A new programme for the medical humanities should involve a radical concern with cultural dimensions of health as more than a ‘subjective’ dimension outside the ‘real’ of medical science. We will explore the notion that all clinical encounters should be considered as cultural encounters in the sense that they involve translation between health as a biomedical phenomenon and healing as lived experience. Hence, our assumption is that the cultural crossings of care are not an exception but the norm. Given this, every clinical encounter should involve a simultaneous interrogation of the patient’s and the doctor’s co-construction of new and shared meanings which can create realities with medical consequences, not ‘mere’ symbols of‘real’ medical issues (Sturm, Baubet, and Moro 2010). It was precisely such a co-construction of shared meanings—‘a hybrid space’—that was achieved successfully in the case of Souad through an act of translation between Arabic and French language. This co-creation ‘oner here' in terms of a linguistic and symbolic ‘inbetweenness’ addressed her anorexia and her desire to go ‘over there'—into the language of ISIL, and the land of biological death.
- 2 A new programme also implies a deconstruction of the difference between hard and soft science. As shown in the case of Souad, cultural, symbolic, and linguistic attachments have medical and bodily implications. The humanities have creative and healing agency; they are not only instruments of care but also of cure. This materially performative aspect of the humanities as part of the medical humanities constellation needs closer attention and further theorisation. At the same time, the need for, and use of, soft supplements in biomedicine should be further explored both historically and ethnographically. This includes both the study of the adaptation of metaphors and concepts from the human sciences (tor instance, ‘translation,’ ‘literacy,’ and ‘empowerment’) into medical discourse, and the implications of these transfers. Added to this is the translation of such practices to so-called ‘global health’ contexts, i.e., different cultural localities around the world. On another level, we should also constantly keep in mind the material, biological, and ecological conditions on which cultural interpretations and translations are based. In the singular case of Souad, her anorexia and her subsequent health improvements also constitute a biomedical point of reference—a kind of inner limit—against which the legitimacy, relevance, and success of the different cultural exchanges with the team and the translations between languages must be assessed.
- 3 The deconstruction suggested above also presupposes a radical questioning ot the medical cultures behind the production and construal ot evidence in medicine. As observed, the dominant evidence-based approach in modern medicine runs the risk ot exalting biolog)' into an ‘essential Being’ and a normative stasis that turns the sick into persons who “lack [. . .] certain biological aptitudes” (Kristeva 2013: 227). Based on this understanding of disease as a lack of full being (steresis), sickness and difference are reduced to general ‘categories ot difference’ where social and biological ‘deviants’ are seen as different in the same way, i.e., as deviants from a social and/or biological standard. Left alone, without being interrupted by a sense for the singularity of the individual case and its lite-context, biomedical discourse “blends all disabled people together without taking into consideration the specificity ot their sufferings and exclusions” (Kristeva 2012: 36). As an alternative to the epistemology ot universal categories re-ducing difference to the same, the medical humanities should consequently contribute to a “singularised” approach to medicine (Engebretsen 2016). A singularised approach, however, is also different from merely considering the individual as a bearer of social/cultural meanings by mobilising ‘patients’ preferences’ in clinical decisions. The singularised approach and the possibility tor symbolic reinvestment and sharing offered to Souad, tor instance, are not equal to a rational choice between different treatment options. Nor is this the same as reducing the individual to biology by using the “individual’s genetic profile to guide decisions made in regard to the prevention, diagnosis, and treatment of disease” (McMullan 2014: 4). On the contrary, a singularised approach is contradictory to any reductionism—psychological, cultural, or biological. Most radically, it implies acknowledging that evidence itself is fundamentally singular; it is always evidence for л particular decision with reference to a general category in a concrete situation. Thus, general categories are also essential in evidence-based decisions—and the notion of the singular, as Hegel underscored at the outset of the Phenomenology, is already itself a general notion. Knowledge about universal categories and generalised pathologies is thus needed both to identify the singular case as singular (i.e., as distinct from a general category) and to create a linguistic, co-created place for transactions and translations between patients and medical specialists. Such general knowledge frames evidence-based decisions made locally, with reference to the particular patient, but should not be mistaken as evidence per se. Rather than an act of application, evidence-basing should be considered as a process of differentiation—it is the process ot teasing out the differences between the singular case and the various referential spaces (laboratories, mice models, trials, systematic reviews, etc.) in which knowledge about a treatment is produced. Evidence is this difference between the specific and the general and not the application of a norm.
By beginning to tackle such radical questions, our ‘think-tank’ aims to be the impetus for a fundamental revisioning of the role of the medical humanities in relation to medical and humanistic research and practice. In this new intellectual and practical space, the medical humanities should be seen as a cross-disciplinary and cross-cultural space for translation and bidirectional critical interrogation of both biomedicine (simplistic reductions of life to biology) and the humanities (simplistic reductions ot suffering and health injustice to cultural relativism).
This chapter builds on, and expands, an argument first presented in a paper published in the BMJ Medical Humanities (Kristeva et al. 2018).
Bakhtin M. 1981. Forms of time and of the chronotope in the novel, in the dialogical imagination: Four essays. Austin, TX: University of Texas Press.
Barthes R. 1989. Sades, fourier, loyola. Berkeley, CA: University of California Press.
DemdaJ. 2016. Ofgrammatology. Baltimore, MD: |HU Press.
Engebretsen E. 2016. The medical concept of evidence and the irreducible singularity of being. Keynote speech at the Kristeva Circle in Stockholm. Available at: www.kristeva.fr/eivind-engebretsen-the- medical-concept-of-evidence.html. Last accessed: 31 March 2018.
Engebretsen E, Sandset TJ, Odemark J. Expanding the knowledge translation metaphor. Flealth Research Policy and Systems. 2017; IS: 19.
Fitzgerald D, Callard F. 2016. Entangling the medical humanities. In: A. Whitehead, A. Woods (eds.) The Edinburgh Companion to the Critical Medical Humanities. Edinburgh: Edinburgh University Press, 35—49.
Heidegger M. 1962. Being and time. New York, NY: Harper.
Hurwitz B, Dakin P. Welcome developments in UK medical humanities. Journal of the Royal Society of Medicine. 2009; 102: 84-5.
Hygmus, Fabulae 200—277. I960. The myths ofhyginus, publications in humanistic studies, no. 34. Lawrence, MO: University of Kansas Press.
Kleinman A, Van Der Geest S. ‘Care’ in health care. Remaking the moral world of medicine. Medische Antropologie. 2009; 21: 159—68.
Knsteva J. 2003. Lettre au president de la republique sur les citoyens en situation de handicap: а Г usage de ceux qui le sont et de ceux qui ne le sont pas. Paris: Fayard.
Knsteva |. 2011. This incredible need to believe. New York, NY: Columbia University Press.
Knsteva J. 2012. Hatred and forgiveness. New York, NY: Columbia University' Press.
Knsteva J. A tragedy and a dream: Disability revisited. Irish Theological Quarterly. 2013; 78: 219—30.
Knsteva J. 2016. Interpreter le mal radical (‘Interpreting Radical Evil’). LTnfini. Available at: http://www. kristeva.fr/le-mal-radical.html. Last accessed: 31 March 2018.
Kristeva, J, Moro, MR, Odemark, J, Engebretsen, E. Cultural crossings of care: An appeal to the medical humanities. BMJ Medical Humanities. 2018; 44: 55—8.
McMullan D. What is personalized medicine? Genome. 2014: 32—9. Available at: http://genomemag.com/ what-is-personalized-medicine. Last accessed: 31 March 2018.
Napier AD, Ancarno C, Butler B, et al. The Lancet commissions: Culture and health. The Lancet. 2014; 384: 1607-39.
Reich W. 1995. Classic article: History of the notion of care. New York, NY: Simon and Schuster.
Stunn G, Baubet T, Moro MR. Culture, trauma, and subjectivity: The French ethnopsychoanalytic approach. Traumatology. 2010; 16: 27—38.
Svenaeus F. Illness as unhomehke being-in-the-world: Heidegger and the phenomenology of medicine. Medicine, Health Care and Philosophy. 2011; 14: 333—43.