In Chapter Six I used Philpin’s (2007) work to explore how biomedical professionals, cultures and environments could be viewed as ritual cleansers. Martin, Gillian, Andrew and Sylvia all had their highly polluting, ambiguous and liminal statuses removed by a host of medical professionals (Philpin, 2007, pp.52-53). Indeed, without biomedical intervention those participants would have died. Although, as well as saving lives and cleansing identities, biomedical institutions, environments and cultures can also be seen to extend ambiguous states through the episodic perpetuation of a patient status in a liminal place (Philpin, 2007), and through participants’ dissatisfaction with some treatments and their outcomes. Regarding the former point, the six participants who had a cancer diagnosis had to return for regular checkups initially to assess their remission status. Richard, William, Natasha, Sylvia and Eileen had all undergone further cancer treatment involving engaging with biomedical professionals, environments and cultures. For those who had experienced accidents, Gillian, Martin and Andrew all had multiple reconstruction operations to rebuild their body-faces in the months and years after the event.
Regarding the latter point, four participants relayed additional identity disruption and upset caused by problematic biomedical treatments or encounters long after the initial disruption. Agnes’s asymmetrical smile was the result of accidental nerve cutting during childhood surgery to remove a life-threatening ear infection. Six decades later she continued to be conscious of the difference and to avoid smiling and having her photograph taken when possible. Likewise, Clara’s childhood injuries were not treated properly and she developed noticeable scar tissue, which became frequently commented on; she withdraw from social networks and hid behind her hair at school and became disengaged with lessons for the rest of her school career. When she had her nose reconstructed at the age of 17 the surgeon did not comply with her requests and she became even more aware of her continued facial appearance (Leder, 1990), which made her even more monadic and
dissociated (Frank, 1995). Though various biomedical tests and treatments were conducted for Stephen’s acne rosacea, they did not have the desired restorative effect. Nor did he feel that his emotional and social suffering was being taken seriously by his GP. Stephen became increasingly socially avoidant (Goffman, 1959; Bury, 1982). Finally, Jonathon’s original misdiagnosis and subsequent late cancer diagnosis had meant he had to undergo a stronger form of medical treatment. This had disrupted the control of his body, his biography and predicted future much more than the ‘disfigurement’ and left him feeling very angry.
‘Treatment absolutely stunning, the hospitals no problem, it was just the circumstances at which I arrived at that, that I am angry with… I have written it down, I have got I think 54 hospital visits in a year, 18-mile round trip and after the second one
(cancer diagnosis), this one, there were 63 because they said chemo and radiotherapy phenomenal disruption to my life, there wasn't room for anything else’ (Jonathon, 2011). Even when body-faces had been bio-medically cleansed, bound and reconstructed these steps did not necessarily lead to identity reintegration. Some participants, for example Gillian took decades to re-associate with her body-face and two participants, Clara and Stephen remained in monadic, dissociated states at the time of the interview, approximately 50 years and 25 years respectively after the change had occurred. ‘Social life is ruined, my work life is ruined you know, there is loads of aspects of my life erm… which have been ruined you know’ (Stephen, 2011). If and when a participant did start to move towards embodied identity reintegration, it generally occurred away from biomedical professionals, cultures and environments and happened in multiple stages as Sylvia’s quote illustrates:
‘I was going through this process of rehabilitation not psychologically, but physically...’
(Sylvia, 2011).
Cancer and continued liminality
Little et al. (1998) found that living with a cancer diagnosis could result in an ongoing transitional health status, regardless of longevity. Whilst Callaghan (2004) found that patients who had undergone head and neck cancer surgery reported distress, negative self- image and loss of self-esteem in the aftermath. The narratives of some participants who had had cancer, or who were in remission at the time of the interview echoed these sentiments (Sylvia, Natasha, Jonathon). Even if the surgery and chemotherapy/radiotherapy
had been declared successful, the threat of its return with associated chaos and existential threats was omnipresent (Callaghan, 2004). Five of the six participants with cancer experiences had a further episode and treatment. As such they continued to be patients in liminal places, e.g. hospitals and clinics and to inhabit transitional identities, somewhere between health and sickness, life and death. This was a significant identifying experience; however other elements of their embodied selves came through during the narrations. William had had three more facial cancer episodes. However, through regular monitoring and early treatment he was able to continue managing and performing his identity (Goffman, 1959; Butler, 2004) as an astute problem solver, thus linking his past, present and future. Natasha was in remission with advanced (stage four) cancer, which she dealt with by ‘boxing’ up her lifeworld and identities into compartments and ‘pretending it’
wasn’t happening, or by not thinking about it. She talked about herself as a shop owner, wife and mother, ‘and you know in lots of ways my life is as easy as it conceivably could be if you could just not think about the health side of it’ (Natasha, 2011).
Though Jonathon’s lifeworld had been significantly disrupted through a cancer diagnosis and subsequent treatments, he was still able to continue performing (Butler, 2004) aspects of his identity i.e. community involvement, learning and control of others. As a member of a cancer support group he had been able to invite oncologists to speak about treatment developments. And though Jonathon had been cancer-free for a few years prior to the interview its spectre remained on the horizon, as it did with Sylvia (Jackson, 2005; Philpin, 2007). Even when she had been given the all clear by health professionals after the first cancer episode she did not believe them. This illustrated the critically inquiring and ‘confident’ aspect of her identity, which was still present though much diminished in the early aftermath of the treatment:
‘... and she looked at me and she said, you will be pleased to know that it is working and it’s shrinking. And do you know, I just didn’t believe her... Had I been in any other situation I would have just jumped up and kissed her, but I just knew she was lying...’ (Sylvia, 2011).
Reflecting on reflections: some visual implications of acquired facial
‘disfigurement’
During the last chapter, I explored how the experience of acquiring a facial ‘disfigurement’ could lead to visual identity disruption, transition and liminality. I do not wish to repeat myself here, but to offer some more academic explanations as to why visual liminality may
continue for months, years and decades after the original ‘disfigurement’ occurred, as with Clara and Stephen.
Looking at a reflection in the mirror in the aftermath of facial ‘disfigurement’ is a reminder that the face is always on show to self and others and always vulnerable (Levinas, 1969, p.251) to the physical, verbal and non-verbal actions of others. Sylvia, Clara, Stephen, Gillian, Marie and Agnes’s altered appearances and voices were commented on by unknown others in ways that made them uncomfortable and upset. Clara was called Miss Piggy by school children, Marie had an uncomfortable work phone call with someone who thought she was chewing a sweet; she was still coming to terms with her ‘alien’ sounding voice. Gillian was ridiculed in a bar by an unknown and rude ophthalmologist who commented on her missing eye. Gillian then felt obliged to recount the whole story upsetting her and ‘ruining’ her night out in the process. Stephen’s boss knew he was sensitive about his acne rosacea, though he still brought the subject up in work meetings, thereby making it worse and leaving Stephen silent, upset and angry. In this quote, Sylvia articulates the distress of having an ever-present facial injury, disability or health problem compared to one that is hidden from view:
‘When you see somebody with a facial disfigurement you take a step back and think oh my God… the initial (silence) it’s shock, because with our faces we can’t cover up the damage that is done’ (Sylvia, 2011).
When looking in the mirror people are also reminded that their facial capabilities may have diminished, for example the ability to see, to communicate, to smell, eat and drink, which in turn disrupts and alters perception, sense making and people’s ability to take part in habitual socially orientated activities, such as eating in restaurants. In spite of being less concerned about her visual appearance Doreen was disappointed that she could no longer eat out with her sister and friends, as she had to blend her food first and felt conscious in front of others. Whilst for those with cancer, looking in the mirror could be a visual reminder of the threat of existential curtailment. However, for some participants, the marks left on the body by the removal of disease were a positive reminder that they had lived to tell the tale. These sentiments were expressed by Sylvia, Natasha, Jonathon and William.
When some participants looked in the mirror they were reminded of disruptions to the spoken and physical performance of their previous body-face. In the period before the car crash Martin strongly identified with himself and his abilities in a visual capacity. In the aftermath, he was devastated as he could not recognise himself, or his former abilities, though he became interested in what could be done and some years later became visually re-associated, as he learned new performances with his body, such as playing golf. This was also true for Gillian. When she looked in the mirror for the first time the full emotional trauma of the accident hit her. At the time of the interview over two decades later Gillian had reconstructed her identity and appearance and was happy with both, though she still carried a performance prop (Goffman, 1959) in the form of a hat, in case of unwanted comments from strangers.
In other respects the act of looking in the mirror or at a photograph after an acquired facial ‘disfigurement’ reminded people that they were not autonomous, bounded individuals (Shildrick, 2008). Instead, through engagements with biomedical cultures, practices and institutions involving the removal and reconstruction of facial matter, the participants were reminded of their intercorporal condition (Csordas, 1994) and the suffering of others (Frank, 1995). This recognition (Frank, 1995), lead all bar one of the participants to give their time and energy to charities to help people with similar conditions and experiences. It gave William a sense of existential perspective. The remaining one, Stephen was considering starting a Facebook page for people with acne rosacea.
‘You can always find someone much, much worse than yourself, doesn’t matter whatever, if you fall out of an aeroplane and smash yourself to bits you will find that somebody is even worse off. So, it doesn’t trouble me anymore. Go and sit in the waiting room of the oncology clinic, you look around think hey I am one of the lucky ones’ (William, 2011).