Margrit Shildrick

Troubling dimensions of heart transplantation

Heart transplantation is now the accepted therapy for end-stage heart failure that is resistant to medical treatment. Families of deceased donors routinely are urged to view the heart as a “gift of life” that will enable the donor to live on by extending and sustaining the life of a stranger. In contrast, heart recipients are encouraged to view the organ mechanistically—as a new pump that was rendered a spare, reusable part when a generous stranger died. Psychosocial and psychoanalytic research, anecdotal evidence and first-person accounts indicate that after transplant, many recipients experience unexpected changes or distress that cannot be understood adequately using biomedical explanatory models alone. In this paper it is argued that phenomenological philosophy offers a promising way to frame an ongoing empirical study that asks recipients to reflect on what it is like to incorporate the heart of another person. Merleau-Ponty and others have posited that any change to the body inevitably transforms the self. Hence, it is argued in this paper that replacing failing hearts with functioning hearts from deceased persons must be considered much more than a complex technical procedure. Acknowledging the disturbances to embodiment and personal identity associated with transplantation may explain adverse outcomes that heretofore have been inexplicable. Ultimately, a phenomenological understanding could lead to improvements in the consent process, preoperative teaching and follow-up care.

Dangerous Discourses: Anxiety, Desire, and Disability

The pleasure and danger of sexuality thematizes erotic desire as always accompanied by a certain anxiety. Although some anxiety is material and precautionary, I address the issue somewhat differently through investigating the psychic factors at play in the western imaginary. Discomfort with manifestations of erotic desire is most clearly invoked by differential embodiment where the challenge to the normative body not only results in disqualification from discourses of sexuality but also raises the contested question of who is to count as a sexual subject. My purpose is not to inquire empirically into the ways that people with disabilities are denied sexual subjectivity but to ask what is at stake in the cultural imaginary that requires such a closing down of possibilities. I develop a psychoanalytic approach to sexually marked anomalous embodiment and ask what part the link between desire and lack plays in thwarting a positive model of disability and sexuality.

Some Reflections on the Socio-cultural and Bioscientific Limits of Bodily Integrity

The question of what constitutes, indeed what is meant by, bodily integrity is one that readers of Body & Society will find implicitly at the forefront of many articles published in the journal, and especially those in this special section. Where once the apparent truth of the Cartesian body as the unified and fundamentally unchanging material base of continuing existence could be taken for granted, the development of both contemporary biosciences and postconventional modes of theoretical inquiry have radically undone that illusory certainty. In particular the emergence of phenomenology, as a potent explanatory model that closes the conceptual gap between mind and body to focus on the experience of embodiment, has opened up new areas of concern. Those concerns engage with the affective significance of both external issues such as the conventional understanding of prostheses, and the more visceral experience of organ transplantation, although I would be wary of making any firm distinction between the exteriority and interiority of bodily being. Broadly speaking, the issue to hand is not simply that of body modification where a certain obeisance to corporeal integrity remains, but that of the insistent potential of radically

The postconventional body: Retheorising women's health

We propose that womens health-both theory and practice-is a powerful arena in which to re-align and change the modernist theoretical underpinnings of current biomedical paradigms, which limit our understanding both of concepts of health and illness and of the impact of health care technologies on the body. We highlight the necessity of a move to a more dynamic paradigm for health and illness in the clinic, as well as a theoretical fluidity that allows for the real messiness of lived bodies. We argue that postmodernist thought, within wider feminist theory, is one of many perspectives that can contribute to contemporary biomedicine by providing theoretical underpinnings to develop 1) an understanding of bodies in context, 2) an epistemology of ignorance, and 3) an openness to the risk of the unknown. While these all entail a commitment to self-reflection and a willingness to be unsettled, which may not seem practical in the context of medical practice, we argue that self-reflection and unsettledness will provide pathways for grappling with chronic conditions and global bodies. Overall, we suggest that womens health practice can serve as a site in which both sides of the humanistic/scientific divide can engage with a human self in all its corporeal variety, contingency, and instability. More specifically, by providing a space within the clinic to examine underlying ontological, epistemological, and ethical assumptions, womens health can continue to contribute to new forms of biomedical practice.

Qualitative interviews vs standardized self-report questionnaires in assessing quality of life in heart transplant recipients.

Quality of life (QoL) studies in heart transplant recipients (HTRs) using validated, quantitative, self-report questionnaires have reported poor QoL in approximately 20% of patients. This consecutive mixed methods study compared self-report questionnaires, the Medical Outcomes Study 36-item Short Form Health Survey (MOS SF-36) and the Atkinson Life Satisfaction Scale, with phenomenologically informed audiovisual (AV) qualitative interview data in 27 medically stable HTRs (70% male; age 53 ± 13.77 years; time since transplant 4.06 ± 2.42 years). Self-report questionnaire data reported poor QoL and more distress compared with previous studies and normative population samples; in contrast, 52% of HTRs displayed pervasive distress according to visual methodology. Using qualitative methods to assess QoL yields information that would otherwise remain unobserved by the exclusive use of quantitative QOL questionnaires.

The Obligation to Say ‘Thank you’: Heart Transplant Recipients’ Experience of Writing to the Donor Family

Transplant recipients are encouraged to write anonymous thank‐you letters to the donor family. We prospectively explored heart transplant recipients’ embodied responses to the ‘obligation’ to write a thank‐you letter using audio/video‐taped open‐ended interviews (N = 27). Fifteen of the 19 participants, who wrote letters to the donor family, expressed or visually revealed significant distress about issues such as the obligation to write anonymously and the inadequacy of the ‘thank‐you’. Writing the thank‐you letter is not a neutral experience for heart transplant recipients. Rethinking the obligatory practice regarding the thank‐you letter and developing the necessary support for the recipient through this process is necessary.

Heart transplants: Identity disruption, bodily integrity and interconnectedness

Of heart transplant recipients, 30 per cent report ongoing or episodic emotional issues post-transplant, which are not attributable to medications or pathophysiological changes. To this end, our team theorized that cardiac transplantation introduces pressing new questions about how patients incorporate a transplanted heart into their sense of self and how this impacts their identity. The work of Merleau-Ponty provided the theoretical underpinning for this project as it rationalizes how corporeal changes affect one’s self and offer an innovative framework to access these complex aspects of living with a transplanted heart. We used visual methodology and recorded 25 semi-structured interviews videographically. Both visual and verbal data were analyzed at the same time in an iterative process. The most common theme was that participants expressed a disruption to their own identity and bodily integrity. Additionally, participants reported interconnectedness with the donor, even when the transplanted heart was perceived as an intruder or stranger. Finally, transplant recipients were very vivid in their descriptions and speculation of how they imagined the donor. Receiving an anonymous donor organ from a stranger often leaves the recipient with questions about who they themselves are now. Our study provides a nuanced understanding of heart transplant recipients’ embodied experiences of self and identity. Insights gained are valuable to educate transplant professionals to develop new supportive interventions both pre- and post-transplant, and to improve the process of informed consent. Ultimately, such insights could be used to enable heart transplant recipients to incorporate the graft optimally over time, easing distress and improving recovery.

‘Living on; not getting better’

The contemporary emergence of the concept ‘debility’, which pertains to a broad swathe of humanity whose ordinary lives simply persist without ever getting better, shares a time span with an acute critique of neo-liberal biopolitics. Where capital has historically relied on a population that through its labour necessarily becomes debilitated, the newer model of understanding references the intrinsic profitability of debility itself. The two dimensions overlap and co-exist, but what I shall pursue here are the implications of recognising that, at the most fundamental level, it is in the interests of neo-liberalism to produce and sustain bodies as debilitated and therefore susceptible to a range of market commodities that hold out the promise of therapeutic interventions into the relative failures of physical, cognitive and affective embodiment. In previous work, I have argued strongly for the inherent vulnerability of all bodies, but in considering here a more overtly politicised context, it becomes possible to readdress the questions posed by Jasbir Puar: ‘which bodies are made to pay for “progress”? Which debilitated bodies can be reinvigorated for neoliberalism, and which cannot?’ And at the present moment, writing at a time of imposed austerity, I would add, what, if anything, is lost in the deployment of the term debility instead of disability?

Staying Alive: : Affect, identity and anxiety in organ transplantation

The field of human organ transplantation, and most particularly that of heart transplantation where the donor is always deceased, is one in which the rhetoric of hope leaves little room for any exploration or understanding of the more negative emotions and affects that recipients may experience. Where a donated heart is commonly referred to as the ‘gift of life’, both in lay discourse and by those engaged in transplantation procedures, how does this imbricate with the alternative clinical term of a ‘graft’? For recipients of donor organs, the experience of living on in the face of otherwise certain death is fraught with complex emotions, not only about the self and the now dead other, but the persistence of the other within the self. In contrast to our expectations of the feel-good narrative of the gift of life, recipients are often significantly troubled by the aftermath of the procedure, which may fundamentally challenge notions of personal identity, as well as having deep implications for our understanding of the relation between death and ‘staying alive’. Drawing on recent research into heart transplantation, I shall theorise the field through a reflection – drawing on both Mauss and Derrida – on the meaning of the gift, before moving on to consider whether a Deleuzian approach to both the assemblage and the ‘event’ of death might offer a more productive framework.

Becoming-maternal: things to do with Deleuze

Given that psychoanalysis is so often the privileged discourse in the relation to the maternal feminine, it makes good sense to ask whether a Deleuzian alternative should be heard. The difficulty is that the whole discourse of the maternal and motherhood is represented only by silence in Deleuze’s own work, and feminist scholarship has largely failed to remark that absence. Nonetheless I look to Deleuze for an approach that decisively contests any psychoanalytic model that bases itself around the concept of lack – however that might be twisted and transformed in relation to the maternal – and that incorporates a positivity that might critically revalue the feminine. Starting with a brief excursus through phenomenology, I consider two pertinent issues: first that the ‘event’ of giving life might be rethought in the mode of the impersonal; and second that the slide from encounter to connection, and from maternal-foetal embodiment to the notion of assemblage, might open up at very least a quasi-Deleuzian notion of positive flows, desire and energies. Could becoming-maternal figure more productive pathways that transform our understanding of the materiality of motherhood?