My hypothesis is that the beginning of the twenty-first century marked the emergence of a ’therapeutic’ way of writing and reading. Literature is viewed as a way of bringing literature and medicine closer together and extending a more general view on literary forms of attention and the ethics of care. With the example of French and Francophone literature, I suggest a relational turn defines the contemporary literature: literature is considered as a relationship – between the author and herself, between the author and her relatives, between the author and her readers, and between the readers themselves. Literature is a means of producing awareness and attention, that is to say, to point out, to make visible, to give importance to people or to situations that society and the economy do not make visible or invisible.

This chapter uses Don Delillo’s novel Zero K to consider the historical and structural relationship between bioethics and biocapitalism, particularly in the development of consent forms and contract labour. In this way, the essay examines the role human capital theory and transhumanism have played in influencing definitions of human nature and the bioethical frameworks predicated on these definitions. Using the techniques of literary narrative bioethics and feminist relational bioethics, the essay carefully interprets Zero K’s treatment of cryonics as a bioethical dilemma too often contained and constrained by historical and ideological conceptions of consent, which the novel seeks to critique. Ultimately, the chapter offers a form of posthuman literary narrative bioethics as an alternative methodology.

The introduction considers the multiple and complex ways in which the two dynamic fields of medicine and literature have been intertwined, how they have crossed over and developed alongside or in the shadow of one another. To this end, it develops the three main axes of the volume, namely its focus on historically, formally, and politically relevant conjunctions within the field. By spotlighting the long relationship between medicine and literature, the introduction scrutinizes the character, symmetries, and directionality of the medicine-literature connection; it explores how this volume pays testimony to the truly multifaceted reciprocal relationship at the heart of medicine and literature, which include multilingual, multicultural, global, and local perspectives as much as further consideration of how the interactions between medicine, health, and literature are shaped by intersectionality and planetary health.

The parallel chart is a novel medico-literary practice, invented by Dr Rita Charon as part of her creation of narrative medicine. It is a form that both innovates in the domain of medical humanities practice and works to subvert the traditional balances of power in the clinical setting. Despite its widespread inclusion in the repertoire of narrative medical techniques, there has been little consideration of the form’s development in the context of its historical antecedents and the many forms into which it has subsequently evolved. The design and structure of the parallel chart practice inform its goal of training clinicians in narrative competence and bolstering their clinical skills. The practice descends from and innovates upon several notable trends in the history of medical training. The various forms that have evolved from it are utilized as pedagogical tools in a multitude of present-day medical educational and clinical arenas.

Written during a crisis, this volume betrays an awareness that the field of ‘literature and medicine’ is at a crossroads. It anticipates the many directions that researchers can take, but also records the anxieties involved in not knowing what lies ahead. We take three steps in this Afterword, which may pave the way for future forays into this area. First, we sketch how the particular ‘medical’ event of the pandemic has transformed literature as medium, art form, and practice. By identifying the thematic and formal trends, we also signal the necessary methodological adjustments that we will have to take to assess these critically. Second, with a view to these changes and the necessary opening up of the field of medicine and literature that the pandemic has made visible, we draw attention to the thematic and formal trends that may be helpful in this endeavour. With a view to the volume chapters, we identify the possible directions that can be intensified in the future. Finally, under the heading ‘Medicine and Literature, quo vadis’, we indicate some of the ways in which, we strongly believe, scholars across Medical and Health Humanities, literature and medicine, and humanities in general, might be going.

This chapter probes the conceptual architecture of irritability in the eighteenth century. It justifies this case study not through a pre-established research agenda but because automated statistical comparisons reveal a marked transformation both in the term itself and in the broader network in which it is embedded. Irritability has long been marginalised in favour of its sister term, sensibility; yet we demonstrate the abiding significance of the former, in a variety of canonical works (Erasmus Darwin, Edmund Burke) and less familiar medical handbooks. This largely overlooked medical discourse infuses broader thinking on gender, colonialism and aesthetics; it worries the distinction between human and non-human life. We conclude by proving that the emergence of the irritability network holds significant consequences for other forms of conceptual thinking. In particular, we show how it affords a rethinking of the notion of habit, and facilitates the transformation of the cultural concept of system from a largely Newtonian and mechanistic notion, at the beginning of the eighteenth century, to an increasingly dynamical and physiological entity.

This chapter contextualizes Tolstoy’s literary production within the medical sciences of the second half of the nineteenth century, when the field changed rapidly in the wake of scientific discoveries, such as germ theory, a reorganization of the medical institutions, and Alexander II’s liberal reforms. The chapter addresses Tolstoy’s experience of and views on medical procedures and institutions of his time, as well as the writer’s stance toward medical theories and their proponents, including Cesare Lombroso). It shows how the writer’s ambivalent relationship with medicine and doctors is staged in his oeuvre. Works analyzed include War and Peace, The Death of Ivan Ilyich, and Resurrection.

This chapter is a fictional account of several people talking about aspects of their lives that are impacted by variations in sex development at a support group meeting. In their exchanges about past, present and future medical encounters, the author draws out both the opportunities and the dilemmas presented by medicine. Through the characterizations, the author also teases out some of the most pertinent psychological themes in the field, such as how to decide about “normalizing” surgery for a child and how to talk about bodily differences in relationships. These themes are centralized in Chapters 9–14 and explored in the literature summaries and practice vignettes therein.

Chapter 6 summarizes the changes to medical care in recent years. There is now a greater recognition that the projected social and psychological challenges of genital variations cannot be fixed by surgery. The first international consensus statement on intersex was published in 2006. The statement makes a number of recommendations to improve care. Controversially however, a new term disorders of sex development (and, later, differences in sex development, or DSD) was introduced to replace intersex and hermaphroditism. Biotechnological developments have been advancing rapidly. More has been learned about “normal” and “abnormal” sex development. However, parents still struggle to talk to children about their bodily variations, young people still worry about getting into relationships, childhood genital surgery is still considered the only way out of stigmatization, psychological expertise is still a low priority in specialist services and the huge potential of peer support is not fully realized.

How to talk about variations in sex development is a major theme for impacted individuals and families. This is the topic of Chapter 12. The author summarizes the research literature with caretakers and with adults about the difficulties of disclosure. Considerable criticism has been levied at health professionals for failing to role model affirming communication. For sure there are gaps in health professionals’ talk, but the biggest contributor to the difficulties is to do with the widespread misunderstanding about the biological variations. Psychological care providers are not there to put a cheerful gloss over clients’ negative expressions. However, they can be part of the favorable social condition in which a wider range of meanings about bodily differences are negotiated. In the practice vignette, the author highlights how tentative and uncertain the enabling process is, where a negative view of sex variations is still widely endorsed in the social context.

In a gendered world, doctors and caretakers took for granted that making atypical bodies more typical was a humane way out of a difficult situation for child and family. Had the professionals carried out proper research, they would have learned from their young patients that the approach was physically and psychologically risky. But research on the long-term effects was not carried out, certainly not from the patients’ perspective. There was also no comparison group made up of people growing up with unaltered genital variations. Research with adults is the topic of Chapter 4 of this book. Since the 1990s, a number of outcome studies with adults have identified many problems of childhood surgery, such as multiple operations, scarring, shrinkage, sensitivity loss, unusual genital appearance and sexual difficulties.

Chapter 2 begins with a brief summary of typical embryonic development of the urogenital and reproductive systems. Where the sex chromosomes, reproductive organs and the genitalia in combination do not fit the social categories of female and male, doctors and scientists used to call these physical outcomes hermaphroditism and intersex. They debated for a long time on the “true sex” of the individuals but could not agree on which of the biological sex characteristics should count as their true sex – should it be the sex chromosomes, the gonads or the genitals? Although in the age of genetics, much more is known about how the atypical features have developed. At the same time, people who are impacted by the variations are increasingly disputing medical framing of their differences. The twenty-first century was to seed a new and ongoing debate between the new medical term, differences in sex development (DSD) and intersex, which is now reclaimed by many impacted adults.

Chapter 11 of the book reviews potential psychological contributions in the highly charged process of assigning legal gender to a newborn with genital variations. Although a number of psychological theories exist for understanding gender development, it is the brain gender framework that has been singularly privileged in intersex and DSD medicine. However, the decades of research cannot contribute to the certainty professionals and caretakers seek. Psychological care providers (PCPs) have other frameworks to draw from in order to work ethically and pragmatically with families. In the practice vignette, the author envisions how a highly skilled PCP in a high-functioning DSD team could work substantially to help caretakers to cope with uncertainty and minimize the need for psychosocially motivated medical interventions. In the vignette, the psychological care path is in position before medical investigations begin. It remains highly active long after the medical and legal processes are completed. Although the vignette is built around a child diagnosed with 17β-hydroxysteroid dehydrogenase-3 deficiency, the care principles are relevant to legal binary gender assignment for children born with a range of sex development variations.

Difficulties with communication about bodily differences are strongly linked to sexual experiences. In Chapter 13, the author critiques the dominant ways of talking about sexuality in the wider society. These oppressive ideas can give rise to insecurities, self-objectification and body shame for people in general. Adults who have been medically managed are particularly vulnerable to the effects of objectification and shame. The author outlines typical components of sex therapy programs. However, rather than fix sexual problems, which can perpetuate people’s sense of inadequacy, the author suggests that psychological care providers support clients to process any trauma and develop a more relaxed and appreciative relationship with the body. This work, which requires generic therapy knowledge and skills, can be integrated with a range of specific sex therapy techniques and resources to reimagine a sexual future that focuses on bodily pleasure rather than gender performance. Although the practice vignette is built around a female couple, one of whom has partial androgen insensitivity syndrome, the care principles have wide applications for people with variations more generally.

Not all sex variations are apparent at birth. Sometimes they are internal and therefore not visible, that is, children are born looking like a typical boy or girl. The child may be brought to medical attention much later, for example when puberty does not follow the expected path. Many of these care users were not told the truth about their biological variation because adults believed that the information would harm them. At the same time, the care users also noticed that they were fascinating to health professionals, who may examine them in droves. Some of them did not discover the truth about their diagnosis and the treatment until mid-life.

For children whose external genitalia look different, when surgical safety and techniques improved, it became routine to align the urogenital anatomy of newborns and young children to the assigned gender. The gender-genitalia alignment was believed to be important psychologically for child and family. Because surgeons found it easier to feminize than masculinize the genitalia, most babies with genital variations were assigned female. From the 1990s, some of these adults have spoken out, talking of too many operations, been too often examined by too many and not understanding what was happening.