Academic journal article Journal of Literary and Cultural Disability Studies

A State of Flux: On Bleeding

Academic journal article Journal of Literary and Cultural Disability Studies

A State of Flux: On Bleeding

Article excerpt

A Blind Spot

This article begins in a near-empty space where one might find the multiple object1 known as haemophilia. There are few non-medical reflections on haemophilia and CBDs in general;2 and what there is, often turns out to be wrong, outdated, or fanciful. As we discuss, haemophilia is often a hidden experience,3 aside from its lack of treatment in literature, academic or not. We would like to re-frame haemophilia through a philosophical, yet subjective, treatment that seeks to describe it as a cluster of experiences that often step outside of the bounds of the medical definition.

There has been virtually no attempt to interpret haemophilia and its experience within a philosophical framework. Georges Canguilhem-in his 1943 masterpiece, The Normal and the Pathological-offers a few remarks, which are in our opinion wide of the mark (see below). In neighbouring areas of the human sciences, references are also scant. In bioethics, we primarily find Peter Singer's notorious claim that, "on the 'total' version of utilitarianism," (Singer 185) the diagnosis of haemophilia could justify abortion and, possibly, newborn euthanasia (see Lelli 288-91). Bleeding disorders have been given some more accurate attention in socio-cultural and socio-psychological literature (e.g., Davidson, Carricaburu, Marková, Orsini, Cassis et al., Brigati and Emiliani). There is also a small body of literature that combines the genres of historical representation, preservation of collective memory, and exposé. These works outline the history of the medical diagnosis, yet primarily highlight the "blood affair," that is, the HIV- and HCV-infections that spread through contaminated plasma-derived products and, in the late '80s, also involved criminal conduct by blood industries and national agencies in various countries (e.g., Henry, Pignatta and Bertone, Pemberton, Resnik).

There are few life-narratives on the experience of haemophilia, and no literary portrayals of haemorrhagic patients to our knowledge. The only autobiography by an adult haemophiliac is Touch Me Who Dares by Shelley (born in 1936). Henry's De l'hémophilie, White and Cunningham's My Own Story and Smoak's Bleeder mostly refer to what happened after the protagonists were infected with HIV. Robert and Suzanne Massie wrote an autobiographical account of their Journey as parents of a haemophilic son in the '60s. Finally, there are precious, if scattered, sources provided by haemophilia organizations in the form of independently produced interviews and biographic information (e.g., Marchello). Filmography includes a film inspired by Massie's book on the Romanovs, the last Russian imperial family, who had a haemophilic son (Nicholas and Alexandra); the rather grotesque depiction of the protagonist's haemophiliac brother in Alexandre Rockwell's In the Soup; and an indie movie from 2001 about a haemophilic Cherokee boy (The Doe Boy).4

In this article we do not try to fill these gaps, but rather to expand on some aspects by specifically addressing the experience of haemophilia. As haemophilia is arguably a hidden disability (identity issues aside), the social model of disability (e.g., Oliver) does not entirely apply. Rather, we address the complex picture of agency, identification, and identity, as well as subjective experience, needs to be addressed. In fact, in the last decade there has also been a shift in medical research and practice that increasingly concentrates on the psychosocial aspects of the haemophilia experience5 and that acknowledges the more serious issues framed by the individuals themselves. Thus, while literature will be taken into account, much of our reflections are derived from the personal history of one of the authors as a haemophiliac-or, more precisely, as a 54-year-old European male with severe B haemophilia, enabled by professional skills and a personal commitment to provide a voice for a fairly representative portion of his own community. This voice has been moulded by innumerable encounters with patients, parents, and caregivers, within and without medicalized frameworks; but even so, there is strictly speaking no single condition for all haemophiliacs. …

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