'Anything but the eyes'

Why do so many people refuse to donate their corneas when they die? An exhibition of artworks by psychologist Dr Jennie Jewitt-Harris explores the question.

Most people are supportive of organ donation, yet a significant proportion of potential donors refuse corneal donation despite being willing to leave all other organs. One in eight registered donors restrict their organs for donation with 89 per cent of these excluding corneas. A new exhibition of art from psychologist Dr Jennie Jewitt-Harris explores why.

‘The concern regarding corneal donation for some people is so great that the social and moral pressure to donate cannot overcome it,’ Dr Jewitt-Harris told us. ‘Assumptions are often made about the reasons why, and are wrongly attributed to religious beliefs or squeamishness. The reasons are actually poorly understood. Surveys of potential donors have revealed a significant number of people unable to describe why they say no (see Lawlor et al., 2010; Lawlor & Kerridge, 2011).’ 

Dr Jewitt-Harris has used an art/psychology research approach to investigate the concerns underpinning the decision. A semi-structured interview technique was used to elicit beliefs and metaphors that underpin concerns for participants who refuse to donate their corneas but are willing to donate all other organs. ‘A qualitative grounded-theory approach has value here for its expansive role in understanding areas like this that cannot be accessed quantitatively, opening new avenues of psychological enquiry, interpreting such phenomena in terms of the meanings that people bring to them. Discourse analysis tools were used to reveal common themes that were explored using creative artistic practice. Art was used as a medium to connect with and embody the feelings of participants as an alternative language to communicate and express concerns. Follow-up interviews were held to discuss the emerging artworks and develop them further to connect with concerns.’ 

The themes revealed through the artworks were: the physicality of the eyes could not be separated from self and identity; the eyes were perceived as a personal black-box recorder of life that must not be shared; donating the eyes was equated with the erasure of identity; and the eyes are equivalent to the self and a deep inter-connection exists between anatomy and the individual lived experience, with the eyes carrying the past of their owner into death. ‘These findings refute the ‘rational’ Cartesian model of mind and body separation that transplantation has relied on (see Shildrick et al., 2009),’ Dr Jewitt-Harris said. ‘They fit more with the phenomenological position of Maurice Merleau-Ponty, with perception as the very foundation of human existence.’

The artworks created an important catalyst for discussion, Jewitt-Harris said, encouraging people to consider/discuss their desire to donate corneas, and to understand the views of those who decline. ‘Non-gift-of-life views and refusal to donate is often challenged as superstitious, selfish, and ignorant. The research participants, however, expressed feelings of embarrassment and guilt, with fear of being seen as illogical, selfish, and squeamish. The debate about donation must acknowledge that non-religious deeply-held spiritual beliefs need to be respected. The desire to push through this is understandable, but space must be created for alternative beliefs and wishes to be upheld, understood, and respected. The option to opt-out of donation of certain organs rather than all organs may be needed for some to protect their eyes.’ 

The exhibition Anything But the Eyes will open at South Hill Park Mirror Gallery, Bracknell, 8 July – 2 October 2021.

www.jenniejh.co.uk

Illustration: Jennie Jewitt-Harris, Red Connection, Fabric mask installation

References

  1. Lawlor, M. & Kerridge, I. (2011). Anything But the Eyes: Culture, identity and the selective refusal of corneal donation. Transplantation 92 pp.1188-90.
  2. Lawlor, M., Kerridge, I., Ankeny, R., Dobbins, T. & Billson, F. (2010). Specific Unwillingness to Donate Eyes: The Impact of Disfigurement, Knowledge and Procurement on Corneal Donation. American Journal of Transplantation Vol 10 (3) pp.657-663.
  3. Shildrick, M., McKeever, P., Abbey, S. et al (2009). Troubling dimensions of heart transplantation. Medical Humanities 2009;35 pp35-38.
  4. Merleau-Ponty, M. (1964) Primacy of Perception (Studies in Phenomenology and Existential Philosophy) Illinois: Northwestern University Press.

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