The harms of medicalisation: intersex, loneliness and abandonment

Abstract

This article develops loneliness as a political and social justice issue by illustrating the harmful personal and social consequences of the medical jurisdiction over and constitution of variations in sex characteristics. Whilst connections between loneliness, health and illness have been well established, this work customarily identifies the ways illness can lead to, or be caused by, loneliness. Instead, I provide an account of the central role of medicalisation and medical management in producing loneliness. By doing so, I underline the imperative for medical practice to consider its influence upon social and personal, as well as physical, wellbeing. Drawing on stories shared through solicited diaries followed by in-depth interviews with seven people with sex variations and two parents in the UK, I show how accounts of loneliness help to illuminate the violence of abandonment, silencing and marginalisation that often goes unheard, together with hidden or normalised systems of harm. Building on concepts of ethical loneliness and ontological loneliness, I show how structural violations operate to injure trust and self-worth, leading to social unease. I argue for the importance of people with sex variations finding sites of comfort and acceptance, but note the ways that some forms of medicalisation can inhibit alliances and community formation, despite diagnoses also carrying the potential to facilitate informal support structures and collective identities. By bringing together intersex studies with discourses of loneliness, I develop a better understanding of loneliness as a product of social and systemic violence, and the ways in which medical discourses tie in with larger structures of oppression, coercion and control. This article concludes by underlining the need for structural change in our approach to and understanding of sex variations, and with a call for us to become more attentive to these stories of medical harm, to ensure that they are heard and to seek necessary justice.

Compelled loneliness and necessitated social isolation: “It’s like being on the other side of a mirror, just looking in”

“…Isolation and loneliness can potentially accompany any chronic illness but the stigma of a contested condition, such as ME, incorporates disbelief, scepticism and rejection. Discourses on loneliness have emphasised individuals’ responsibility to improve their loneliness which suggests agency and choice regarding how lonely we feel (Duggan, 2021; Jones, 2022). Yet, when faced with illness and stigma participants had limited choices in how the responded.…”

“…The social restrictions imposed by governments during COVID‐19 lockdowns propelled loneliness to become a critical issue, making it even more crucial to understand the nuanced contours of this experience. Despite the apparent prevalence of loneliness, neoliberal discourses on the subject have tended to be excessively pathologised and focussed on individuals’ personal responsibility to overcome and withstand loneliness (Duggan, 2021; Jones, 2022).…”

‘Solitude is not thrust upon any lovable person’: loneliness, shame and the problem (of) personality

“…Rather than uncovering past experiences of loneliness or historicising the processes and contexts which have made them more likely, my interest is in comprehending and critiquing how, when, where, why and by whom the idea of loneliness has been assembled around particular kinds of emotion and experience. Historians of loneliness, I suggest, can and should apply the kind of rigorous, critical, politically attentive questioning commonplace in historical analyses of discourses on anxiety, depression, schizophrenia, or stress, and present in recent feminist work on loneliness ( Hayward 2014 ; Hirshbein 2009 ; Jackson 2013 ; Jones 2022 ; Magnet and Orr 2022 ). In a flawed but useful overview, the psychologists Daniel Perlman and Letitia Peplau trace the growth of Anglophone loneliness research in the twentieth century: a ‘small trickle’ of work in the inter-war and post-war periods, with only ‘a dozen or so psychologically oriented, English language publications on loneliness prior to 1960’; 64 new publications in the 1960s; roughly 170 in the 1970s; and almost 650 more between 1980 and the time of writing in 1996 ( Perlman and Peplau 1998 ).…”

“…While this may seem like an antidote to the explicitly shaming imaginaries which connected loneliness with ‘unlovable’ personality traits such as selfishness or hostility, it effectively wallpapers over the only causative story with the narrative power to contest them. In the process, it draws focus away from the systemic forms of shaming which are produced by entrenched inequalities, and which frequently result in loneliness and alienation ( Jones 2022 ). As Xiaoqi Feng and Thomas Astell-Burt have – somewhat charitably – put it, these are ‘the shortsighted, inadvertant, reckless, and negligent decisions made across society, fostering stigma and structural discrimination (racism, sexism, ableism, classism), that generate social and built environments that make many people with these characteristics feel perpetually isolated and unsafe’ ( Feng and Astell-Burt 2022 ).…”

(Un)Belonging: The Production of Black Trans Loneliness

“…In a 2022 special issue of Feminist Theory , several authors discussed the myriad ways feminist theories can trouble and disrupt dominant narratives of loneliness. More specifically, the authors suggested several structural forces that may produce loneliness, including settler colonialism (Cvetkovich, 2022), medicalization (Jones, 2022), white supremacy, capitalism, heteropatriarchy (Magnet & Dunnington, 2022), anti-Blackness, transphobia, and HIV stigma (Mosley, 2022). Building on a structural feminist approach, queer of color critique is best suited to situate and center Black trans manifestations of loneliness through structural isolation.…”