Anything but the Eyes
An art-based investigation into why people won't donate their corneas after death
Jennie Jewitt-Harris | | Opinion
Artwork above: Eye Flower, by Jennie Jewitt-Harris. Collage, charcoal and paint on canvas.
Support for organ donation is widespread and the benefits of corneal donation are well-known. There remains, however, a consistent – and significant – proportion of potential donors who refuse corneal donation despite their willingness to donate all other organs (1). In 2019, one in 10 registered donors restricted the organs they would donate. Of these, 68 percent excluded the donation of corneas (2) – four times the number of the next-highest restriction (the heart, which 17 percent preferred not to donate). For some people, the concern over corneal donation is so great that even social and moral pressure to donate cannot overcome it.
This hesitance is often wrongly attributed to religious beliefs or squeamishness, but the real reasons behind it are poorly understood (3). Surveys of potential donors in western countries have revealed some factors that make corneal donation refusal more likely, but a significant number of people are unable to explain why they say no (4).
Method meets art
A qualitative, grounded-theory approach can play a valuable role in understanding areas that cannot be accessed quantitatively. Art-based research can open up new avenues of inquiry in medicine and interpret phenomena like corneal donation refusal in terms of the meanings people assign to them (5).
The goal of my research into the issue of corneal donation refusal was to understand the concerns that underpin people’s unique relationship with the eyes and to provide a new perspective on this internationally recognized phenomenon.
I recruited people who have specifically refused to donate their corneas, but are willing to donate all other organs. A semi-structured interview elicited beliefs and metaphors that underpinned concerns. I also used discourse analysis tools, which revealed common themes that were explored using creative artistic practice. I used art as a medium to connect with and embody the feelings of participants – an alternative language for communicating their concerns. Finally, I held follow-up interviews with participants to discuss the emerging artworks and develop them further to connect with people’s fears and concerns.
The following themes were revealed across all interviewees: that the physicality of the eyes could not be separated from self and identity; that the eyes were perceived as a personal black-box recorder of a person’s life that cannot and must not be shared; that some people equated donating the eyes with the erasure of identity; that the eyes were equivalent to the self and this association continues after death regardless of what happens to the physical body (burial or cremation); that a deep interconnection exists between anatomy and the individual lived experience; and that the eyes carry the past of their owner. These findings refute the “rational” Cartesian model of mind and body separation on which transplantation relies (6). The findings fit more with the phenomenological position of Merleau-Ponty (7), who rejected the Cartesian view to incorporate a more realistic perspective on social and individual reality and regarded perception as the very foundation of human existence.
Disseminating the findings
The artworks I created were publicly exhibited and will be further exhibited in 2021. The exhibitions have been an important catalyst for conversation, encouraging people to consider and discuss their desire to donate corneas and to understand the views of those who decline. There is often a clear lack of respect for non-gift-of-life views and donation refusal; it is considered superstitious, selfish, or ignorant to withhold organs. The research participants and many exhibition visitors, on the other hand, expressed feelings of embarrassment and guilt and often kept quiet about their concerns for fear of negative reactions. The debate about donation must acknowledge that non-religious spiritual beliefs need to be respected. These concerns are deeply held and difficult to explain. The desire to push through them by introducing an opt-out system for donation is understandable, but I believe we must understand, uphold, and respect alternative beliefs and wishes. Some people need a more flexible system in which they can opt out of donating certain organs, without having to opt out of donation entirely, to protect their eyes.
- NHSBT, “Cornea donation myths dispelled” (2019). Available at: https://bit.ly/30uoTJj.
- NHSBT, “Organ donation and transplantation: Activity report 2018/19” (2019). Available at: bit.ly/2Bgw9Ab.
- M Lawlor, I Kerridge, “Anything but the eyes: culture, identity and the selective refusal of corneal donation,” Transplantation, 92, 1188 (2011). PMID: 22011764.
- M Lawlor et al., “Specific unwillingness to donate eyes: the impact of disfigurement, knowledge and procurement on corneal donation,” Am J Transplant, 10, 657 (2010). PMID: 20121739.
- R Jones, “Why do qualitative research?” BMJ, 311 (1995). PMID: 7613316.
- M Shildrick et al., “Troubling dimensions of heart transplantation,” Med Humanit, 35, 35 (2009). PMID: 23674630.
- M Merleau-Ponty, The Primacy of Perception. Northwestern University Press: 1964.