Abstract
This chapter reveals the extent to which personhood needs to be worked at, maintained, and protected. It does so by considering examples of the socially and culturally troubling boundaries between life and death, states of being what Degnen calls “endangered personhood”. These include brain death, dementia, and forms of disordered consciousness such as persistent vegetative state. All generate sharp questions around the nature of consciousness, issues of embodiment, and the ontological challenges of defining personhood or identifying where the person is located. Also explored in this chapter is the significance of narrativity and relationality for how personhood might be said to continue in the absence of individual agency, and the “loss” of the person versus the person “living on”.
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Notes
- 1.
I am indebted to The Guardian’s coverage of this story in my recounting of it in this chapter. I have relied especially on these two articles in reconstructing the events Muamba experienced: https://www.theguardian.com/football/2012/mar/25/muamba-collapse-minute-by-minute and https://www.theguardian.com/football/2012/mar/21/fabrice-muamba-on-the-mend
- 2.
There is a medical distinction made between “persistent” (called “continuing” in the UK) and “permanent” vegetative states based on length of time spent in that state. The NHS (2017) specifies that a persistent or continuing vegetative state is when the state has lasted for longer than four weeks; a permanent vegetative state is indicated when the state has lasted for more than 6 months (if caused by a non-traumatic brain injury), or more than 12 months (if caused by a traumatic brain injury).
- 3.
For an instructive point of comparison to these public discourses about organ donation in Japan and North America, consider Bob Simpson’s work on the significance and popularity of eye donation (2017) and donation of other human tissues (2004) in Sri Lanka. Simpson explores how it is that whilst eye donations globally are notoriously difficult to procure—they are often interpreted as connected to the “essence” of person as I explore later in this chapter via the work of Haddow (2005)—in Sri Lanka there is a pronounced willingness to donate. The supply is so great that the country can both meet its own internal demand for corneas and also be a major global exporter, providing 47,015 corneas to date to over 50 other countries (Simpson 2017). Simpson contextualises this remarkable rate of eye donation firstly within Sinhala Buddhist concepts of virtuous and meritorious giving. In this regard, selflessness via bodily donation is understood to assist in achieving a better rebirth. But also of significance is the wider context of the end of recent civil war and from which the nation is attempting to reconstitute itself. In this regard, and as he explains (2017), rhetorics of donation seek on the one hand to minimise internal divisions along racial, ethnic, and religious lines as part of post-war reconstruction, but on the other hand reproduce the dominant Sinhala Buddhist state.
- 4.
This includes the respective Bar Associations in America and Japan, and their contrasting positions for physicians seeking to practise organ transplantation: The American Bar Association and the American Medical Association were aligned in their support (Lock 2002: 111) whereas in Japan , the Bar Association was not in support of the definition of brain death, nor consequently of organ transplantations (Haldane 2002).
- 5.
Since the time of Lock’s publications, a new bill on brain death and organ transplantation was passed in 2009 in Japan , coming into effect in July 2010. This new bill recognises “brain death as actual death and…allow(s) organ transplants from a brain-dead person of any age if his or her family members approve and if the person had not openly rejected the possibility of becoming a donor” (Japan Times 2009). This bill revises the 1997 Organ Transplant Law discussed above. The newspaper coverage in 2009 makes clear that whilst the new law implements a new definition of death—as the 1997 law did not “recognize brain death as actual death and allows organ transplants only from people who accept brain death as actual death” (Japan Times 2009)—there is still a widespread and pronounced resistance amongst many Japanese people to brain death as “actual” death. Also of note are the relatively low numbers of organ transplants in Japan . Between October 1997 when the Organ Transplant Law came into effect and the time of writing in 2009, “hearts, lungs, livers, kidneys, pancreases and small intestines have been transplanted from 81 brain-dead people into 345 people in Japan” (Japan Times 2009). This contrasts with 1364 people in the UK becoming organ donors in 2015–6 alone resulting in 3519 transplants according to the NHS donor organisation website (https://www.organdonation.nhs.uk/news-and-campaigns/news/highest-number-of-organ-transplants-ever-across-uk-but-many-families-still-say-no-to-donation/ viewed 22 April 2017). For comparison, the population size of Japan was approximately twice that of the UK in 2017, based on United Nations data (http://www.worldometers.info/world-population/population-by-country/ viewed 22 April 2017).
- 6.
This is a point I scrutinise in greater detail below when I discuss Haddow’s (2005) work on the families of organ donors in Scotland.
- 7.
The NHS website on disorders of consciousness states that consciousness requires awareness and wakefulness and that “A disorder of consciousness, or impaired consciousness , is a state where consciousness has been affected by damage to the brain…Wakefulness is the ability to open your eyes and have basic reflexes such as coughing, swallowing and sucking. Awareness is associated with more complex thought processes and is more difficult to assess. Currently, the assessment of awareness relies on physical responses being detected during an examination. The main disorders of consciousness are: coma, vegetative state, minimally conscious state.”(see http://www.nhs.uk/conditions/vegetative-state/Pages/Introduction.aspx Viewed 20 April 2017.
- 8.
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Degnen, C. (2018). Endangered Forms of Personhood. In: Cross-Cultural Perspectives on Personhood and the Life Course. Palgrave Macmillan, New York. https://doi.org/10.1057/978-1-137-56642-3_7
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